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Critical Research and Perspectives – Journal of Humanities in Rehabilitation https://jhrehabredesign.ecdsdev.org A creative exploration of the human experience of disability and healing Thu, 04 Sep 2025 13:59:31 +0000 en-US hourly 1 https://wordpress.org/?v=7.0 Accessibility Accommodations on the National Physical Therapy Examination: An Exploratory-Descriptive Qualitative Study https://jhrehabredesign.ecdsdev.org/2025/04/08/accessibility-accommodations-on-the-national-physical-therapy-examination-an-exploratory-descriptive-qualitative-study-copy/ Tue, 08 Apr 2025 19:21:06 +0000 https://jhrehabredesign.ecdsdev.org/?p=11389

Accessibility Accommodations on the National Physical Therapy Examination: An Exploratory-Descriptive Qualitative Study

Table of Contents

Abstract

Background and Purpose: Physical therapy educators are witnessing an increase in the number of students with disabilities requesting accommodations on the National Physical Therapy Examination (NPTE). Little is known about how the process of seeking these accommodations impacts applicants. The purpose of this qualitative study was to examine the lived experiences of NPTE candidates who navigated the process of applying for testing accommodations on the NPTE.

Subjects: Recent NPTE candidates (2017-2022) were recruited via the American Physical Therapy Association Academy of Education LISTSERV. Exclusion criteria were candidates who did not request disability accommodations and those who took the NPTE prior to 2017.
Methods: This study utilized an exploratory-descriptive qualitative research method with purposeful sampling to examine NPTE candidates’ experiences with the process of applying for testing accommodations. Data was collected using semi-structured interviews, and data analysis was conducted using thematic structural analysis.

Results: The authors conducted five interviews. Structural analysis yielded the following themes: 1) NPTE candidates who apply for accommodations face the “disability tax;” 2) “invisible disabilities” impact individuals seeking accommodations throughout their educational and early professional careers; and 3) entry-level physical therapist educational programs affect the NPTE testing experience for those seeking accommodations.

Discussion and Conclusion: The current process of applying for NPTE accommodations places a heavy burden on candidates, which disproportionately impacts some candidates more compared to others. This information sets the foundation to drive future actionable strategies that address the structural barriers impacting the NPTE testing accommodations process.

Key Words: physical therapist education, disabilities, testing accommodations, National Physical Therapy Examination, qualitative research

Introduction

In 2022, discussion took place on the American Physical Therapy Association (APTA) Academy of Education LISTSERV regarding the testing accommodations process for candidates preparing to take the National Physical Therapy Examination (NPTE) (multiple contributors, APTA Academy of Education LISTSERV, February 2022). Individuals participating in the discussion, who primarily self-identified as educators in entry-level physical therapist education programs, shared the experiences of current students and recent graduates navigating the process of applying for accommodations. One common thread through this discussion was the fact that the process for securing accommodations varies across different states. Some educators shared that they knew candidates who received accommodations throughout their undergraduate and professional school careers but were then denied those same accommodations on the NPTE. Many candidates went through the appeals process, but were still denied accommodations. Some candidates even chose to apply for accommodations through a different state than the state in which they both lived in and intended to practice. Then, they retroactively applied for licensure in the state in which they intended to practice. This rich dialogue highlighted an issue within the field of physical therapist education: inequities in the process of applying for NPTE testing accommodations.

This discussion also sparked a movement that has since led to the adoption of HOD-P08-22-14-18: Equitable Accommodations in Physical Therapy, an APTA House of Delegates position statement emphasizing the importance of promoting equitable processes for the securement of reasonable accommodations through physical therapist education and practice, including on the NPTE.1 Despite these initial steps toward promoting improved equity for testing accommodations on the NPTE, little is known about how the process of seeking these accommodations impacts applicants. The purpose of this study was to examine the lived experiences of NPTE candidates who navigated the process of applying for testing accommodations. Thus, the research question was: “What are the experiences of NPTE candidates who applied for testing accommodations?”

Literature Review

Physical therapists (PTs) and physical therapist assistants (PTAs) play a critical role in the management of disability. However, a disconnect exists between the field of physical therapy and the disability community at large. Only 5% of surveyed student PTs report having a disability,2 compared to 26% of the United States adult population3 and 11% of all graduate students.4 Furthermore, many in the disability community have been critical of the role that rehabilitation professionals play in conceptualizing and treating disability.5,6 Ableism, or disability bias, has been defined as “a pervasive system of discrimination and exclusion that oppresses people who have mental, emotional, and physical disabilities… [and] operates on individual, institutional, and societal/cultural levels.”7,p198 Ableism is pervasive within our culture and within healthcare.8 This bias is reflected in physical and social accessibility limitations in healthcare settings9 and educational institutions,10 including the accommodations process.11

Overview

This section will provide a brief overview of testing accommodations in physical therapist education and review the current process of seeking accommodations on the NPTE.

Testing Accommodations in Physical Therapist Education

While the Americans with Disabilities Act of 1990 provides federal civil rights protections for individuals with disabilities and prohibits discrimination against those individuals in employment, education, transportation, and physical spaces open to the general public, its full implementation remains a challenge in healthcare and higher education. Individuals with disabilities in entry-level physical therapist educational programs have reported inconsistencies in the provision of educational accommodations.12 Additionally, standardized procedures for the selection, notification, and implementation of accommodations in clinical education does not exist in entry-level physical therapist educational programs.13 Physical therapy faculty report challenges in determining and implementing reasonable accommodations for students with disabilities,14 and describe struggling to reconcile providing accommodations for students while remaining focused on the health and safety of the patients and clients these students will eventually manage.15

The number of individuals with disabilities applying to entry-level physical therapist educational programs is increasing,16 as is the number of NPTE candidates seeking testing accommodations.17 While there is insufficient data examining trends in the number of entry-level physical therapist students who identify as having a disability, there is likely a connection between increasing numbers of applicants with disabilities, students with disabilities, and NPTE candidates seeking accommodations. In combination with increasing numbers, the visibility of individuals with disabilities within the profession is also improving, as evidenced by the formation of the Disability Justice and Anti-Ableism Catalyst Group within the APTA Academy of Leadership and Innovation.18 Given the evolving landscape of disability representation in physical therapist education, relevant stakeholders (eg, physical therapist faculty, university administration, NPTE leadership) must also adapt to better support the needs of those navigating the accommodations process.

NPTE Testing Accommodations Process

Managing the requests for accommodations on the NPTE is an evolving process that varies from state to state. At the time of this manuscript’s writing, requests for testing accommodations in 28 states were managed directly by the Federation of State Boards of Physical Therapy (FSBPT) while the remaining 22 states independently manage requests by their state’s licensing authority (Figure 1).19

Figure 1. Map of the United States of America. Maroon indicates states in which testing accommodations requests are managed by the Federation of State Boards of Physical Therapy (n=28). Navy indicates states in which testing accommodations requests are managed by the state licensing authority (n=22).17 Information current as of January 2025.

For candidates in FSBPT-managed states, individuals first register for the NPTE, then assemble and submit supporting documentation20 along with the FSBPT Accommodations Request Form.21 The FSBPT reviews the request for accommodations and communicates their decision. If denied, candidates can submit an appeal.22 If approved, candidates receive an Authorization to Test letter reflecting those accommodations and then schedule their exam.

Available NPTE accommodations include:

  • Testing in a separate room
  • Allowing extra time on the exam
  • Using a reader or scribe
  • Using Zoom text magnification
  • and other accommodations.19

For those in independent states, the request process varies significantly on a state-by-state basis. For example, the Physical Therapy Board of California (PTBC) requires candidates to complete a multi-page Disability Accommodation Request for Examination Form23 that includes a professional verification of need for accommodations by a qualified evaluator and a list of accepted standardized psychometric test results performed to diagnose the disability. This information is accessible on the PTBC’s website,24 and is listed first in search results for “accommodations.” The accommodations request form is also listed under “Applicant Forms” in the “Forms” tab of the website.25

In contrast, the process in Connecticut is unclear. No forms are immediately available on the Connecticut State Department of Public Health’s Physical Therapist Licensure website,26 nor do any relevant results populate when searching for “accommodations” using the website’s search feature. These inconsistencies make it more difficult for candidates in some states to apply for accommodations than in others, thereby contributing to inequities within the accommodations application process (Figure 2).

Figure 2. Graphic demonstrating the differences in the management of NPTE accommodations requests between states in which requests are managed directly by the FSBPT and those where requests are managed by the state’s licensing authority.

Methods

Research Framework

This study utilized an Exploratory-Descriptive Qualitative (EDQ) research approach with purposeful sampling of participants. The EDQ research approach is based on the work of Stebbins27 and Sandelowski,28,29 and is used to both explore and describe aspects of healthcare practice, education, and policy when the topic under investigation has received little previous attention.30 EDQ research recognizes the subjective nature of the problem being examined and highlights the different individual experiences that participants have.31 EDQ research is used to uncover the ‘who, what, and where’ of events or experiences.30

Purposeful sampling is considered an appropriate strategy in EDQ, allowing the researcher to recruit participants who can provide the information needed to address the study’s aims.30 For data collection, the use of semi-structured interviews is recommended, in conjunction with the collection of participant demographics to generalize who is feeling what about whom, and when and where the action is taking place. Data analysis for this study followed the six-phase thematic analysis process described by Braun and Clarke.32 This six-phase process begins with the data being transcribed and the researcher familiarizing themselves by reading and re-reading the transcript and noting their initial ideas. Relevant data is coded in a systematic fashion across the data set, and codes are then collated into themes. Themes are then reviewed, both in relation to the codes as well as in relation to the data as a whole. Themes are defined and named and a report is produced that relates the themes back to the research question(s) and any relevant literature.32

Best practice in disability studies literature includes the researcher stating their own relationship to disability.33 The principal investigator (PI, KAF) currently identifies as a non-disabled ally to the disability community and as the sibling of a person with congenital disabilities. The PI has taken graduate-level coursework on the social constructs of disabilities and earned a post-baccalaureate certificate in diversity, with an emphasis on disability as a form of diversity. The PI’s clinical background area is the neonatal intensive care unit, where they worked to support individuals with disabilities and their family units. The PI is a Certified Aging-in-Place Specialist through the National Association of Home Builders and owns a consulting company focused on designing physical spaces accessible to those of all ages and abilities. These educational, clinical, and personal backgrounds provide the lens through which the PI views disability.

Sample and Interviews

Texas Woman’s University Internal Review Board approved the study, which was completed as part of the PI’s graduate coursework. Participants were recruited from NPTE candidates who took their licensure exam between the years 2017 and 2022, via an email sent by the PI to the APTA Academy of Education LISTSERV. Academy members were encouraged to forward the email to recent graduates from their respective educational programs. The recruitment email included a link to an anonymous survey (PsychData, LLC, Irving, TX) that collected demographic information, including participants’ self-reported disability status. The survey did not include an explicit definition of disability, so participants were free to interpret the construct of disability in the way in which they most closely self-identified.

When self-identifying, participants were prompted to select all that apply from the following disability types:

    • Behavioral
    • Emotional
    • Learning
    • Mental
    • Physical
    • Sensory

Upon completion of the survey, participants were invited to continue participation in semi-structured virtual interviews.

Interview exclusion criteria were those who:

    • Did not request testing accommodations on the NPTE.
    • Did not self-identify as having a disability.
    • Did not want to participate in a virtual interview lasting less than one hour.
    • Took the NPTE earlier than the year 2017.

Semi-structured interviews lasting less than one hour took place virtually and were held on secure video format over Zoom with the PI, who presented their identity to participants as a physical therapist and graduate student with research interests in the intersection between physical therapy and disability studies.

An interview guide was created, focusing on participants’ experiences as individuals with disabilities seeking accommodations on the NPTE, with questions focused on describing a typical day in their life as well as describing their experiences with accommodations (Appendix 1).

The PI, aided by the interview guide, used open-ended questions in combination with data gleaned from the demographic survey to explore candidates’ experiences navigating the NPTE. After interviews were completed, audio recordings were transcribed using NVivo software (Lumivero, Denver, CO) and all personal information was de-identified. Field notes were combined with audio transcriptions to provide additional context to the data collected (including both non-verbal and paraverbal communication: tone, pitch, and cadence).

Process consent was obtained at multiple points throughout the study, as described by Munhall.34 Accessibility accommodations were made as needed during semi-structured interviews, including offering breaks to participants, providing questions in both written and verbal forms, and enabling closed captions. Participants were offered the opportunity to review the transcript of their interview, a form of respondent validation which is used to help establish trustworthiness in qualitative research.35

Data Collection and Analysis

Data collection and analysis followed Hunter, McCallum, and Howes’ approach to EDQ research,30 with the goal of exploring and describing the process of applying for testing accommodations on the NPTE. This approach was deemed the most appropriate method to explore a relatively unknown phenomenon that has not yet been studied in physical therapy educational research by providing insight into NPTE candidates’ perceptions and experiences of requesting testing accommodations. The decision to conduct this research following EDQ methodology was also made in order to test the feasibility of implementing semi-structured interviews for data collection and thematic analysis of results in the topic area, which will help guide the PI’s future graduate coursework.

Results

Study Participants

A total of seven individuals responded to the survey. One survey participant did not formally request NPTE accommodations because he did not believe he would receive the accommodations in time for his test, and thus was excluded from the study. Another did not respond to the PI’s follow-up request for an interview. Therefore, five interviews were conducted, which took an average of 24 minutes (range: 19-30 minutes). Participant demographics are shown in Table 1. States represented included a mixture of those where accommodations requests are managed by the FSBPT (n=3) and those where requests are managed by individual state jurisdictions (n=2). Survey participants included candidates from Arizona, Massachusetts, New York, Texas, and Virginia. Four out of five participants reported multiple disabilities, with representation across the following disability categories: emotional, learning, and sensory. All participants graduated and took the NPTE between 2017 and 2021.

Table 1. Demographic Information of Study Participants

Structural Analysis

During structural analysis, key sections of the interview transcripts were highlighted and condensed down to summary statements, which were further condensed and organized into themes. Three major themes emerged during structural analysis:

  1. NPTE candidates who apply for accommodations face the “disability tax.”
  2. Invisible disabilities impact individuals seeking accommodations throughout their educational and early professional careers.
  3. Entry-level physical therapist educational programs and universities at large affect the NPTE testing experience for those seeking accommodations.

Theme 1: Disability Tax

The first theme to emerge was that of NPTE candidates who apply for accommodations facing the disability tax through the additional labor and costs associated with securing NPTE accommodations for individuals with disabilities. In this context, the disability tax encompasses compiling medical and academic documentation, completing the application itself (including any appeals associated with an application denial), and then scheduling the exam. The disability tax is highlighted in the following statements made by Participants 2, 3, 4, and 5.

Participant 2 expressed frustration with the availability of information on seeking accommodations and suggests the creation of a more centralized, straightforward resource:

“I found it very intimidating to try and navigate who I should be talking to and who needed to receive what and by when. And just to make sure that everything was in line for me to successfully request the accommodations and get them approved in time for the exam. So, I very much felt like everything was on my shoulders to advocate for myself and really be organized and on top of things so that I didn’t screw this [application] up. I wish that there was some kind of website or centralized resource to reference for disability-type accommodations, because I felt like it was very much under wraps. Not that it was intentionally so, but in terms of ADA stuff and wanting to make accommodations accessible in a straightforward manner to people who need them, who might have difficulty accessing the resources to get the accommodations in the first place. Wouldn’t it make sense to have a resource that was readily available for such things?” (Participant 2).

Participant 3 shared a similar request for a more streamlined, uniform process:

“Every state is different, and I wish it was more uniform because there’s a lot of confusion, I think, when it comes to what the steps are. Overall, you just have to make sure that you’re doing your research and you’re asking for help in order to get your accommodations and to have the process be streamlined. And you just need to give yourself extra time because you’re relying on other parties like your psychiatrist and working with your state.” (Participant 3).

Participant 4 expressed frustrations with the inefficiencies associated with having to call to schedule their exam because of their accommodations, as opposed to being able to register online as their peers testing without accommodations could do:

“I was surprised it was what came after that was difficult. I know from my friends who didn’t have any accommodations when they went to schedule their NPTE, they went online, and they picked a day in a location and click! They were registered. And that was it. But because I had accommodations, I couldn’t go online. I had to call. And I sat on the phone, because I took the boards twice, both the first time and the second time I sat on the phone for like a total of four or five hours on hold. I think that that was probably the most frustrating thing because I lost all of that study time. I had all of that frustration. I would go into work feeling so defeated already because I didn’t study. I didn’t get it scheduled. My bosses were like, When’s the test? And I was like, I still don’t know because I sat on hold for an hour and a half and never got through.” (Participant 4).

Participant 5 recounts how frustrating it was to spend the time, money, and effort to undergo formal testing, only for their accommodations request to be denied:

(Referring to the FSBPT): “I was not supported. It was extremely frustrating. I hope you put these in quotes. I was disappointed in their rationale, and I want to pull up the email now thinking about it because it was so infuriating. I had a PhD psychologist do like 16 hours worth of testing and wrote up a report specifically to receive accommodations on a national level that were rejected. So I didn’t feel like they were at all helpful…nor did they take the recommendations from three different doctors I saw seriously. So no, I was not supported on the NPTE.” (Participant 5).

Theme 2: Invisible Disabilities

The second theme to emerge was the concept of invisible disabilities, where participants described the unique challenges associated with the unseen nature of their disabilities. Study participants discussed the major impacts that their disabilities had on their lives, which for all participants occurred primarily during their education. To a lesser extent, some also reported an impact on their work, family, and social lives. Participants 2, 3, and 4 expanded on their invisible disabilities in the following statements:

Participant 2 describes their experience with the invisible nature of their disability:

“I’ve been told on many occasions that if people didn’t know that I had a disability, they would not suspect one.” (Participant 2).

Participant 3 expands on this by discussing the shame they felt when their classmates learned of the educational accommodations associated with their invisible disability:

“And there’s a lot of shame with [accommodations] because people are like, oh, where are you going? Where did you take that test? Did you miss the test? And the other thing is I took longer to get through grad school so some people were like… what happened that you couldn’t hack it and you had to take an extra year? And then it’s like, well, I had some mental health stuff, and it’s a lot easier to explain physical issues versus having mental health stuff.” (Participant 3).

Participant 4 shared their experience with a late diagnosis due to the invisible nature of their learning disability, which was not recognized until they began their entry-level physical therapy program:

“I got diagnosed with my learning disability pretty late in life. And that being said, I never really felt like it held me back in anything because I wasn’t really aware of it until I was. So growing up, I never had any issues grades-wise, I always was a good student, but I always felt like it took me a really long time to do the things that other kids were doing really quickly. And I never really tossed it up to anything other than maybe it just took me a little longer to read. So, once I hit grad school and I was studying nonstop 11, 12 hours of material. And for the first time in my life, I was running out of time on tests and like actually failing out. And I didn’t really know what to think of that because it was the hardest I had ever studied and the worst I had ever done.” (Participant 4).

Theme 3: Institutional Support

Most participants reported feeling well-supported by their educational programs and institutions in utilizing testing accommodations throughout their entry-level physical therapist curriculum. However, some programs and universities were more helpful than others in navigating the process of applying for accommodations on the NPTE. The third and final theme to emerge relates to participants’ perceptions of institutional support for seeking testing accommodations on the NPTE, described in the following statements by Participants 2 and 3.

Participant 2 shared that their program faculty and leadership were unfamiliar with the process of seeking accommodations:

“But for the most part, the people in the department themselves and even the head of the program wasn’t really sure (to the best of my recollection, anyway), what the best approach was to apply for [NPTE] accommodations.” (Participant 2).

Participant 3 echoed these experiences with faculty being unfamiliar with the process:

“I guess the biggest thing is there’s a lot of faculty that do not know the steps involved for [NPTE] accommodations. One instructor told me that it was the Prometric Center that decided accommodations, and I was like, no, that’s the state.” (Participant 3).

Participant 3 also shared how having support from their university’s disability support services office was helpful in navigating the accommodations process, and helped to counteract frustrations with their department’s faculty being misinformed:

(On applying for accommodations on the NPTE): “Yeah, I felt like I was very supported. I felt like my accommodations person [at my university] gave me very detailed information on what I needed to include. He was also very much like, send me the forms and I will see what you filled out. And I’ll tell you whether we need to make corrections because you need to make sure that you include how you struggled and why this is important and why you need it.” (Participant 3).

Discussion and Conclusion

This is the first study utilizing an EDQ approach in entry-level physical therapist education that examined the lived experiences of candidates seeking accommodations on the NPTE. These findings are consistent with the literature on barriers surrounding accessibility and accommodations in higher education11–15 and provide a first-person perspective specific to how this process impacts NPTE candidates navigating the testing accessibility accommodations process.

Theme 1 showed that participants in this study expressed feeling high levels of pressure and devoting significant time and effort to complete the process of applying for NPTE accommodations, a novel finding that has not yet been previously reported. This theme is consistent with how the disability tax is conceptualized in the literature.35 The term “disability tax” was introduced in 2022 and refers to the multiple additional steps that individuals with disabilities must take beyond what non-disabled individuals do in order to secure equitable access to resources.36 This term was adapted from the concept of other taxes impacting marginalized populations, including the minority tax, which encompasses the emotional, economic, and intellectual labor imposed upon people of color who must navigate a predominantly white culture in the workplace.

In framing the concept of the disability tax within the broader construct of disability bias in physical therapy, we are confronted with the irony of a profession supposedly dedicated to advocating for patients with disabilities while simultaneously excluding individuals with disabilities from their full participation in the profession itself.

Participants expressed a desire for improved consistency across jurisdictions as well as the development of a centralized informational resource to streamline the application process. Participants also expressed frustrations with inefficiencies in exam scheduling, primarily related to having to call to schedule their examination time instead of being able to schedule online like those without accommodations can do.

Theme 2 showed that the invisible nature of learning, sensory, and emotional disabilities can be a complicating factor when navigating the accommodations process. “Invisible disabilities” is an umbrella term that refers to disabilities that interfere with day-to-day functioning but do not necessarily have a visible physical manifestation.37 Many participants did not receive a formal diagnosis until later in life and expressed elements of shame as perceived by their classmates’ attitudes toward their accommodations. These subthemes are both consistent with the literature on invisible disabilities, which has examined social and organizational barriers including others questioning the validity of and not understanding the full extent of individuals’ disabilities.37

When connecting the first and second themes, we see that participants feel a layer of complexity exists in navigating the disability tax with an invisible disability because they perceive society to be less understanding of and less accommodating to learning, sensory, and emotional disabilities than physical disabilities, another novel finding that has not been previously reported in physical therapist educational research.

Theme 3 showed that participants sought out both informal support from their entry-level educational programs and formal support from their university disability support services offices during the process of applying for NPTE accommodations. Some participants expressed frustration with faculty who were not well-versed in the accommodations processes, especially when some faculty provided factually incorrect information.

Physical therapist educational programs should recognize that students are looking for additional support during the NPTE application process and consider implementing a coordinated approach to assist these students, as recommended by the United States Government Accountability Office.38 Doing so may help to ease the burden of the disability tax expressed in Theme 1 and may promote improved visibility of the invisible disabilities seen with Theme 2.

Study Strengths

The mantra “Nothing About Us Without Us” is a rallying cry within the Disability Rights movement. James Charlton, a disability rights activist, expands on the above manifesto39,p17 by stating that it “forces political-economic and cultural systems to incorporate people with disabilities into the decision-making process and to recognize that the experiential knowledge of these people is pivotal in making decisions that affect their lives.” The major strength of this study is its intentional inclusion of individuals with disabilities within the narrative of applying for testing accommodations on the NPTE. Further strengths of this study include representation from multiple geographic regions and states following different accommodations applications processes as well as the recruitment of applicants with a variety of self-reported disability types (including those with multiple disabilities).

Limitations

The primary limitation of this study is its small sample size. The decision to proceed with only 5 interviewees was made, with the understanding that the sensitive nature of self-reporting one’s disability status may have deterred potential participants and thereby reduced the number of eligible subjects willing to proceed. Despite the sample size, theoretical and methodological considerations were made throughout the research process to maximize trustworthiness. Additionally, the sample size allowed the PI the opportunity for thorough exploration and detailed analysis within the research context, as well as the ability to lay the foundation for future larger-scale studies. An expansion of this work is in progress, which incorporates an examination of how attitudes toward disability impact the lived experiences of entry-level Doctor of Physical Therapy students with disabilities. This includes students’ choices on whether or not to seek accommodations throughout their professional educational journey, including on the NPTE.

Self-selection bias also may have impacted results, with respondents who perceived a more negative accommodations experience potentially being more willing to participate in the interview process. None of the participants reported having a physical disability, which particularly impacted the study results and the formation of Theme 2. It is possible that this lack of representation is consistent with physical disabilities being underrepresented in physical therapist educational programs,2 and it is also possible that by not explicitly defining disability in the survey, the study may have been biased toward recruiting those with learning, sensory, and emotional disabilities.

Insights

Upon reflection, explicitly asking about the specific accommodations that participants requested on the NPTE would have provided a clearer picture of the accommodations request process for the PI. Some participants offered this information during the interviews while others did not. Additional modifications to the interview guide for future larger-scale studies could include questions focused on further exploring the socio-environmental factors impacting applicants requesting accommodations. This would provide a deeper understanding of what these applicants face so that educational programs and licensing bodies could better support NPTE candidates.

To increase generalizability of the results, future research using similar methodology could include a larger and more robust sample of participants with broader demographics, including racial, gender, and geographic diversity as well as representation from individuals with physical disabilities.

Implications of Findings for Physical Therapist Education

Recognizing that systemic disparities are experienced by NPTE candidates seeking accommodations is the first step in addressing those disparities. Prior to progressing to action-focused solutions, we as a profession must understand the lived experiences of people with disabilities who have taken the NPTE.

Conclusion

The individual experiences of NPTE candidates in this study applying for accommodations varied based on their geographic location as well as their access to institutional, educational, financial, emotional, and temporal resources, which contribute to potential disparities experienced by candidates seeking accommodations. Despite these individual differences, through the EDQ approach, this study found consistency in three major themes that emerged when contextualizing participants’ lived experiences.

Applying for testing accommodations on the NPTE adds another layer of stress to an already highly stressful experience for most testing candidates. Improved ease of access to information related to the accommodations process and a more streamlined application approach nation-wide would mitigate some of that stress and anxiety. To truly advocate for the ideal of “Nothing About Us Without Us,” we must continue the work of fully embracing individuals with disabilities within the profession of physical therapy, including those applying for testing accessibility accommodations on the NPTE.

Appendix

Semi-Structured Interview Questions

  1. Tell me about your typical day as an individual with disability…
    • in your work life…
    • in your social life…
    • in your family…
  1. Tell me about your experience with seeking accommodations in PT school…
    • Tell me about how your program supported of your accessibility needs.
    • Tell me about how your university was supportive of your needs.
  1. Tell me about your experience with seeking accommodations on the NPTE…
    • Tell me about how you felt supported during the process of applying for accommodations.
  1. Tell me about your NPTE testing experience…
    • Describe how the testing experience was the same and different from the exams you took during PT school.
  1. Did you take a licensure prep course? If yes, who paid for it? Describe your experience preparing for the NPTE.
  2. Did you take any NPTE practice exams prior to the real exam? If yes, please tell me about your experience with practice exams
  3. Please feel free to provide any additional details you feel are important regarding your NPTE exam experience.

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  14. Francis NJ, Salzman A, Polomsky D, Huffman E. Accommodations for a student with a physical disability in a professional physical therapist education program. J Phys Ther Educ. 2007;21(2):60-65. doi:10.1097/00001416-200707000-00010
  15. Dhillon S, Solomon P. Accommodating students with disabilities in professional rehabilitation programs: an institutional ethnography informed study. J Humanit Rehabil. 2022. Published November 14, 2022. Available at: https://jhrehabredesign.ecdsdev.org/2022/11/14/accommodating-students-with-disabilities-in-professional-rehabilitation-programs-an-institutional-ethnography-informed-study/. Accessed April 15, 2023.
  16. Hinman MR, Peterson CA, Gibbs KA. Educating students with disabilities: are we doing enough?: J Phys Ther Educ. 2015;29(4):37-41. doi:10.1097/00001416-201529040-00006
  17. Ingram D, Mohr T, Mabey R. Testing accommodations: implications for physical therapy educators and students. J Phys Ther Educ. 2015;29(1):10. doi:10.1097/00001416-201529010-00004
  18. APTA Academy of Leadership and Innovation. Catalyst Groups. Available at: https://www.aptaali.org/general/custom.asp?page=HPACatalystGroups. Accessed June 13, 2024.
  19. FSBPT. Testing Accommodations. Available at: https://www.fsbpt.org/Secondary-Pages/Exam-Candidates/Testing-Accommodations. Accessed February 20, 2023.
  20. FSBPT. Accommodations Guidelines. Available at: https://www.fsbpt.org/portals/0/documents/exam-candidates/AccommodationsGuidelines.pdf. Accessed February 20, 2023.
  21. FSBPT. Accommodations Request Form. Available at: https://www.fsbpt.org/portals/0/documents/exam candidates/AccommodationsRequestForm.pdf. Accessed February 20, 2023.
  22. FSBPT. Accommodations Appeal Form. Available at: https://www.fsbpt.org/portals/0/documents/exam-candidates/AccommodationsAppealForm.pdf. Accessed February 20, 2023.
  23. Physical Therapy Board of California. Disability Accommodation Request for Examination. Accessed June 8, 2023.
  24. Physical Therapy Board of California. Available at: https://www.ptbc.ca.gov/. Accessed June 8, 2023.
  25. Physical Therapy Board of California. Forms. Available at: https://www.ptbc.ca.gov/forms/index.shtml. Accessed June 8, 2023.
  26. Connecticut State Department of Public Health. Physical Therapist Licensure. Available at: https://portal.ct.gov/DPH/Practitioner-Licensing–Investigations/Physicaltherapist/Physical-Therapist-Licensure. Accessed June 8, 2023.
  27. Stebbins R. Exploratory research in the social sciences. SAGE Publications; 2001. doi:10.4135/9781412984249
  28. Sandelowski M. Whatever happened to qualitative description? Res Nurs Health. 2000;23(4):334-340. doi:10.1002/1098-240x(200008)23:4<334::aid-nur9>3.0.co;2-g
  29. Sandelowski M. What’s in a name? Qualitative description revisited. Res Nurs Health. 2010;33(1):77-84. doi:10.1002/nur.20362
  30. Hunter DJ, McCallum J, Howes D. Defining Exploratory-Descriptive Qualitative (EDQ) research and considering its application to healthcare. GSTF J Nurs Health Care. 2019;4(1). https://eprints.gla.ac.uk/180272/
  31. Doyle L, McCabe C, Keogh B, Brady A, McCann M. An overview of the qualitative descriptive design within nursing research. J Res Nurs. 2020;25(5):443-455. doi:10.1177/1744987119880234
  32. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77-101. doi:10.1191/1478088706qp063oa
  33. OToole C. Disclosing our relationships to disabilities: an invitation for disability studies scholars. Disabil Stud Q. 2013;33(2). doi:10.18061/dsq.v33i2.3708.
  34. Munhall PL. Nursing Research: A Qualitative Perspective. 5th ed. Jones & Bartlett; 2012.
  35. Lincoln YS, Guba EG. Establishing trustworthiness. In: Naturalistic Inquiry. SAGE; 1985:289-331.
  36. Olsen SH, Cork SJ, Anders P, Padron R, Peterson A, Strausser A, Jaeger PT. The disability tax and the accessibility tax: the extra intellectual, emotional, and technological labor and financial expenditures required of disabled people in a world gone wrong…and mostly online. Incl Disabil. 2022;(1):51-86. Available at: https://ojs.scholarsportal.info/ontariotechu/index.php/id/ article/view/170/78. Accessed April 15, 2023.
  37. Mullins L, Preyde M. The lived experience of students with an invisible disability at a Canadian university. Disabil Soc. 2013;28(2):147-160. doi:10.1080/09687599.2012.752127
  38. US Government Accountability Office. Higher Education and Disability: Improved Federal Enforcement Needed to Better Protect Sudents’ Rights to Testing Accommodations. 2011:1-44. Available at: https://www.gao.gov/products/gao-12-40. Accessed April 15, 2023.
  39. Charlton JI. Nothing About Us Without Us: Disability Oppression and Empowerment. Univ. of California Press; 2000.

About the Author(s)

Katherine A. Franklin, PT, DPT, PhD(c)

Katherine A. Franklin, PT, DPT, PhD(c) is a clinical assistant professor in the hybrid pathway at the University of Utah’s Department of Physical Therapy and Athletic Training, teaching pediatrics and pathophysiology. She is also a PhD candidate in the School of Physical Therapy at Texas Woman’s University with research interests in the intersection between disability studies and physical therapy education and practice. Katie’s clinical background includes work in the neonatal and pediatric intensive care units, which helped to inspire this piece. She believes that the humanities can help us to cope with grief and loss in a deeply meaningful way.

Carolyn Da Silva, PT, DSc, NCS

Carolyn Da Silva earned her Master of Science in physical therapy at Texas Woman’s University (TWU) in Houston and post-professional Doctor of Science in physical therapy at the University of Alabama at Birmingham. She has been a Board-Certified Clinical Specialist in Neurologic Physical Therapy since 2001. She is a professor of physical therapy at Texas Woman’s University in Houston, teaching courses in neuroscience and neurorehabilitation. She is an advisor and faculty member of the neurologic physical therapy residency programs at TIRR Memorial Hermann and Harris Health. She maintains clinical practice at TIRR Memorial Hermann’s Medical Specialty Outpatient Clinic in post-polio syndrome and in the inpatient rehabilitation unit at Memorial Hermann Hospital – Texas Medical Center.

Wayne Brewer, PT, PhD, MPH, OCS, CSCS

Wayne Brewer graduated from the University of Pittsburgh in 1991 with a B.S. in Physical Therapy and a Master’s in Public Health in 1995. Dr. Brewer practiced for over 20 years with the majority of his patient care in outpatient orthopedics and sports medicine. Dr. Brewer received a Ph.D in Physical Therapy from Texas Woman’s University in 2014. He is a Professor and Post-Professional Program Coordinator in the School of Physical Therapy at Texas Woman’s University. His research interests are in factors that influence minority recruitment and retention and physical activity measurement and promotion for individuals from ethnically diverse backgrounds with chronic conditions. Dr. Brewer is a faculty member in the residency programs at Harris Health Systems, one of the nation’s largest government funded healthcare systems located in Houston, TX. He conducts research and teaches in their Orthopedic and Neurological residency programs.

Rupal M. Patel, PT, PhD

Rupal M Patel, PT, PhD is an associate professor in the School of Physical Therapy at Texas Woman’s University in Houston, TX. As a physical therapist, researcher, and health promoter, Dr. Patel has engaged in the non-traditional roles for PTs in community health and understands the value of inclusion and access to rehabilitation for all. Dr. Patel’s research focuses on finding ways to reduce the social and structural barriers to education and healthcare to move towards health equity for all individuals and populations.

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Advocating for Palliative Care Is Our Role: A Physical Therapist Perspective https://jhrehabredesign.ecdsdev.org/2025/03/04/advocating-for-palliative-care-is-our-role-a-physical-therapist-perspective/ Tue, 04 Mar 2025 15:39:09 +0000 https://jhrehabredesign.ecdsdev.org/?p=11154

Advocating for Palliative Care Is Our Role: A Physical Therapist Perspective

Christina Thomas, PT, DPT

Table of Contents

Introduction

Physical therapy (PT) students are required to complete clinical placements to gain experience with patients and clinician guidance before graduating and practicing independently. My clinical placements were profoundly formative, exposing me to deep human suffering, challenging my view of a physical therapist’s role in neurorehabilitation and care for the seriously ill, and introducing me to the field of palliative care. Through (critical) reflections on key patients over time, each journeying through their own story with brain cancer, I came to see important underlying structures, assumptions, and expectations surrounding palliative care. While providers, patients, and the public often aim to avoid palliative care, I saw that its providers and approaches drastically improve a patient’s quality of life. I also saw the gaps in patient care created by an aversion to palliative care discussions.

Palliative care is a medical specialty focused on maximizing quality of life while minimizing symptoms and stressors associated with serious illness, regardless of disease stage.1 The purpose of this perspective is to interrogate my personal experiences to uncover healthcare structures, clinicians’ assumptions, and social expectations influencing attitudes toward palliative care in the context of rehabilitation. I also aim to challenge current and future physical therapists to critically reflect on their own experiences with palliative care and advocate for better integration of palliative care principles into PT practice.

 

Background

I am the oldest child and only daughter of a small-town doctor practicing deep in South Georgia (USA). My white, well-educated parents were relocated to my hometown, a place where people rarely move, and seldom leave, holding a level of skepticism for all newcomers. My childhood served as my introduction to the complexities of healthcare. My dad’s peers and friends were my physicians on the rare occasion that I needed one. I am able-bodied with the gift of good health, so I have largely associated going to the doctor’s office or hospital with a social visit more than any medical experience. I never had to wonder what an obscure diagnosis or scary-sounding medical test meant, never had to navigate the twisted world of health insurance alone, never had to hope that medical help would arrive on time. I quickly learned that this is not the norm.

As best he could, my dad did not hide from me the stark contrast between my experience of healthcare and that of many others in my rural community. I saw the long hours and sleepless nights he spent caring for patients he knew would not be able to pay. Mothers of children with serious special needs spoke to me in public how grateful they were for his care, as I helplessly tried to empathize with a situation I could never fully understand because of my position of privilege. Kids looked up to him as a reliable source of stability they could not find in other places. Even as he compassionately and sacrificially provided healthcare to an under-educated, economically-disadvantaged community, he knew that the needs were far greater than what he could meet on his own. I gradually recognized the unearned advantages of medical literacy, quality education, financial resources, and positive experiences with healthcare professionals.

However, this realization was not what initiated my pursuit of a career in healthcare. As a university student, I found myself enthralled with neuroscience, anatomy and physiology, and human psychology. Eventually a healthcare degree seemed inevitable, but for far too long the deep sense of care and responsibility for people and the unfair determinants of health that I observed through my father’s eyes as a child remained largely on the periphery. Sure, I began PT school wanting to help people regain their lives through functional mobility, but I had only begun to consider the scope of requirements to do this well. I certainly did not anticipate my most valuable lessons would come from those grappling with the realities of death, states away from home but with a strangely familiar contextual backdrop.

Critical Reflexivity

Critical reflexivity has served as a useful lens through which to examine my own experiences and the evidence that I have consumed, to appreciate the social, structural, emotional, and cultural dimensions of healthcare broadly, and palliative care in neurorehabilitation specifically.2

Critical reflexivity, informed by the social sciences and humanities, is a concept that guides clinicians to consider their own power, knowledge, and limitations in their field along with the unspoken norms, assumptions, and social realities influencing practice.3,4 Both intended and unintended consequences of actions are considered in the process of critical reflexivity, with emphasis placed on the underlying forces in health professions education, clinical practice, and healthcare delivery.3,5 The ultimate aim of critical reflexivity is to provoke system-wide change in the structures and norms that surround patient care.2,4 I recognized, wrestled with, and questioned these structures and norms as a PT student. I have sought to reflect on my personal experiences and, through reflexivity, uncover healthcare structures, assumptions, and social expectations influencing attitudes toward palliative care in the context of rehabilitation.

 

A Patient to Remember

I spent one PT school clinical placement in a rural hospital where I met Tina.* She was pushing away her bedside table and throwing off her sheets as I walked into her room. She glanced at me like I was interrupting something important and continued on. I introduced myself and asked her what she was doing, aware that my interviewing was not going to disrupt what she had made up her mind to do. “Going to the g—damn bathroom young lady, what does it look like?” Her occupational therapist and I jumped in with shoes and a walker, content to continue our unannounced mobility assessment.

Bed mobility, check.
Transfers, check.
Cognitive awareness and impulsivity… TBD.

I managed to slip a gait belt on before we made it too far, fearing a professor might retroactively fail me on the practical exams I had passed to reach this point in my education. Once we started walking, I was glad to have the belt and overjoyed we arrived at her room when we did. Our presence did not deter her from starting a trip to the bathroom, but it ensured she reached her destination safely.

As we walked, I began seeing in person what her chart detailed in text. Tina’s gait was ataxic. Her breathing was labored and shallow. Balance and body awareness were hazardous. I eventually concluded cognition and behaviors were baseline, a fitting display of her fiery stubbornness that had aided her fight against lung cancer thus far. Metastatic lesions from rouge bits of tumor now riddled her brain but that was not going to stop her from voiding her bladder and doing anything else she “damn-well pleased.” She had been hospitalized several times recently, but she was like most patients I saw on that clinical placement.

She had gone decades without seeing any healthcare professional. She couldn’t remember a day in her life she hadn’t smoked—until she arrived at the hospital that stripped away the most basic facets of her day. She had a mild distrust of anything remotely institutionalized, with frequent remarks about how everyone at the hospital was trying to control her, how any living arrangement but her own home would be unacceptably restrictive, and how the government had ruined everything, including the hospital. She had no family nearby, preferring to spend her days independently in her own home. The company she chose included her long-time neighbors and her beloved dog. She had a simple life, but she was content. Despite the poor prognosis associated with her lung, and now brain, cancer, she had managed to continue living alone, doing the things she desired. She had no idea she would never leave the hospital again; neither did I.

Progress – at First

Initially, Tina made progress. She accepted using a walker and showed improving endurance. She agreed to enlist her neighbors more formally for help. We were not thrilled about her going home, but no community options for discharge would accept Tina’s package deal—her and the dog. She was looking forward to their reunion more than anything else. She moved from progressive care up to the medical floor, a positive step toward discharge. The first day I saw her in her new room was awful. It was like she had left herself behind on the lower level. Before, she walked laps around the unit. Now, she could not get out of bed. She could not even keep her eyes open. A switch had flipped. She was actively dying right before my eyes.

Over the course of my rotation, I learned that hospitals are where the poor and marginalized members of our society go to die. People with the means to keep up with maintenance healthcare, fund a healthy lifestyle, and cover large procedural expenses only go to the hospital for life-saving measures. They get in, receive care, and get out. People who do not have access to these things avoid the medical system for most of their lives. Then, they go to the emergency room knowing they will receive treatment regardless of their ability to pay. They bring an impossible case before the healthcare team, and we are left grappling with their expectations while knowing that going back to one’s former life is no longer an option. This is exacerbated in the context of rural healthcare, where multiple social determinants of health (SDOH) compound to influence the care of serious illness.6,7

Intersectionality and Outcomes

Using intersectionality, Cohen emphasized that limited financial resources, older age, and living in rural areas compound to limit access to healthcare and, thus, worsen overall healthcare outcomes.7 Others have highlighted the intersectional relationship between healthcare access, singleness as a female, and lower financial means.8 In light of such literature, Tina’s experience is not uncommon. Various contextual factors, including rurality, social isolation, financial resources, age, and gender, interacted and shaped the trajectory of her health outcomes across the lifespan. It was within this context of multiple SDOH known to contribute to worse health outcomes that I witnessed the resolve and grace demonstrated by Tina’s small-town providers. The physicians prioritizing Tina’s wishes did not see her as a smoker with avoidable lung cancer or a stubborn patient who should have sought medical care sooner, but instead as a dignified human worthy of respect simply because she was a person.

During later clinical placements I saw that certain lifestyle behaviors, including smoking, are seen as morally inferior choices that patients engage in, resulting in stigmatization toward and shame within those practicing these behaviors.9 What is rarely discussed, however, is that it may be this stigma associated with smoking behaviors that actually contributed to Tina’s avoidance of healthcare, as secrecy, not cessation, has been cited as a byproduct of emphasizing patient responsibility over other social, political, and structural forces promoting smoking behaviors.9 Patient perception of stigma from healthcare providers in general seems to be a barrier of particular importance in rural healthcare settings.10

Outside of Tina’s care, I have been struck by the ease with which healthcare providers minimize patients to insensitive one-liners. These dehumanizing, stereotypical views that frame patients as solely responsible for “demoralizing” behaviors ignore the broader SDOH at play and influence a provider’s willingness to individualize care. While this approach can be taken to create emotional distance as a byproduct of overworked, compassion-fatigued providers’ attempts to survive the demands of rural healthcare, I have learned that both patient care and provider end up at a loss with this stigmatized approach.11

Amazingly, medical team discussions about Tina turned to what we could do for her to maintain dignity and comfort. Despite the general lack of specialized training for rural providers contending with these challenges in the face of serious illness,6 several of the hospitalists had developed great skill for managing patients in this setting of poor prognosis and limited resources. This skill set them apart from other providers who had settled to ignore the reality of their workplace. The plan for Tina became focused on managing pain, providing comfort, and, most importantly, briefly ignoring hospital policy concerning furry visitors. PT was not going to drag her out of bed for walks she did not want to take, she would not be forced to eat, the horrible side effects of futile cancer treatment would no longer govern her life. She was going to enjoy her dog, listen to her loyal neighbors recount stories, and then die peacefully.

 

Discovering Palliative Care

By reflecting on the stories of Tina and the other patients to follow, I have realized the lessons they taught me do not fit neatly with what I know and love about restorative neurorehabilitation. I have hoped these patients are the exception and conversations about serious illness are not my responsibility. Ultimately, I have been alerted to the fault in this reasoning and the breadth of responsibility that is granted to rehabilitation professionals. We would all prefer to celebrate the amazing advances of modern medicine and think no more, but healthcare providers have the responsibility to honestly assess the holes in our system. Only by carefully assessing the world we operate in can we identify appropriate solutions.

While it would be several months before I had a name for the approach Tina’s medical team took in her final days of life, her story catalyzed my own questioning of the scope of rehabilitation. I began to wonder if my view of rehabilitative care was too narrow, if it excluded people like Tina and those I had grown up watching my dad care for. I glorified success stories that highlighted innovative advances in restorative rehabilitation at the expense of those flippantly classified as having too many poor prognostic indicators. Learning about palliative care has shifted my perspective. Although it is a field that is still growing, evolving, and grappling with its own challenges, witnessing palliative care at the end of Tina’s life showed me that meaningful PT could not be limited to the one, narrow approach I had conceptualized in my head to make earning a degree and passing standardized tests feel more manageable.

I came to learn that palliative care can be provided to anyone living with a serious illness, even as they receive curative treatment.1 However, in practice and research it is largely employed toward the end of life,12–15 likely contributing to the inaccurate conflation of choosing palliative care and ushering in death.13 The primary goal of palliative care is to provide relief from symptoms and stress associated with serious illness1 while attuning to patients’ social circumstances to give them a better life.

Formal palliative care and, more broadly, personalized care of patients with serious illness comes with unique challenges in the context of a rural medical system like the one where I met Tina. Some have systematically investigated the SDOH contributing to disparities in palliative care.6,16 Using the United States Department of Health and Human Services’ SDOH framework, one group identified determinants particularly evident during my interactions with Tina including lack of patient access to resources, distrust in healthcare, limited social and community support, and environmental injustice.6 These factors compound with rurality to strain healthcare delivery, especially for those with high medical complexity and those approaching end of life.6,7,16 Community-based palliative care has been implemented with some success;17 however, placing this responsibility on communities with few resources, limited health literacy, and differing conceptualizations of death has been rightfully questioned.18 In Tina’s case, community-based palliative care was not an option, and she encountered hospital-based services later in her disease process than is desirable for maintaining quality of life with serious illness. Without addressing the SDOH and disease gradient that unequally impacts rural communities, the benefits of palliative care principles will not be felt by patients like Tina.

I later learned that eliminating rurality, poverty, and poor healthcare access greatly improve a patient’s options for navigating serious illness; however, even when these factors are eliminated, other barriers impact the use and delivery of palliative care services.

 

The Hospital Where Failure Is Not an Option

After my rural hospital placement, I spent four months at one of the best neurorehabilitation hospitals in the United States. The rural hospital had just fired its CEO as their last-ditch effort to avoid bankruptcy in favor of an interim CEO with historical success at helping financially-struggling hospitals survive. Major efforts were being taken to reduce time in the hospital, identify factors contributing to frequent re-admissions, stretch minimal personnel resources as far as possible, and manage the seemingly impossible socio-economic challenges for patients. If patients were well enough to avoid an immediate return to the hospital, their discharge was deemed successful. In contrast, the concept of scarcity seemed foreign at the neurorehabilitation hospital. With cutting-edge technology, a saturation of expertise, and abundant financial resources, they gained a reputation for providing fertile ground to grow miracles. It was a place that promised big, and then—against all odds—delivered.

During the same semester, I enrolled in a Palliative Care class. I had not realized conversations began to take the form of palliative care at the end of Tina’s life; however, as I heard class lectures and discussions, I knew what I was hearing was beneficial because I had seen it work. I knew this class would help make sense of past experiences and benefit my future patients. Naively, I failed to see how it could serve me in an odds-defying neurorehabilitation hospital. Soon, I would learn that personalized palliative care might be the next miracle worth fighting for.

Two New Patients

I did not expect to be reminded of Tina in a place that was so opposite from her experience—abundant resources, full of hope and promise. During my neurorehabilitation rotation, I had two patients with brain cancer. One recently learned of the masses growing between her ears. She had practiced law to improve the lives of foster children, was eagerly anticipating meeting her grandchild, and simply wanted to sit on the porch with her dogs. While sharing a common diagnosis and special affinity for dogs, the similarities with Tina largely stopped there. Tina was a single woman with minimal social support and no college education, living on one meagre income with public insurance in a rural, medically-underserved community. My neurorehabilitation patient was advantaged in all aforementioned areas.

The contrast of their lives highlights the intersectionality of SDOH when considering the type of medical care they received across the lifespan.6–8 While Tina encountered palliative care when she was well overdue for routine care, my neurorehabilitation patient had received exceptional care every step of the way. Interestingly, however, expectations for exceptional care remained narrowly focused on medical outcomes even as this second patient’s glioblastoma became more aggressive, while the severity of Tina’s illness prompted personalized care in the face of medical uncertainty.

Illusions and Unmet Expectations

My neuro-oncology rehabilitation patients had a terminal diagnosis; however, it seemed a trivial detail to the operations of their care. On a brain injury unit, most patients have a non-progressive etiology, so we can aim for restoration. But cancer pays no mind to these rules. The patients with brain cancer had something fundamentally different: an acute awareness of their finitude. They knew they could not go back, and so did everyone on their team. Yet, providers continued their roles as usual. They discussed the sad, impossible state of these patients and then proceeded to set goals, make discharge plans, and consult specialists as though glioblastoma could be lumped into the same category as all other brain injuries. I was at one of the best hospitals in the country and, as far as I could tell, palliative care referrals weren’t being made by inpatient physicians at all.

What started as legitimate outcomes demonstrating the amazing power of neurorehabilitation had become an illusion. To patients and families, all they needed to do was figure out how to get admitted; we would take care of the rest. The privileges afforded to most patients selected for admission to the neurorehabilitation hospital overwhelmingly improve healthcare outcomes, so they did tend to have better prognosis than those directed elsewhere for admission due to poor insurance coverage, limited social support, or unreliable disposition. Patients and families at the neurorehabilitation hospital were used to having their expectations met and exceeded. Not only had miracles become the expectation, but somewhere along the way, that expectation had become laced with stipulations; everyone’s miracle must be achieved the same way. Here, like in other places,15 palliative care was viewed as failure and, therefore, not an option.

 

The Narrow Scope of Healthcare

Why did palliative care seem so foreign, so unimaginable? I believed, with the right measure of resources, knowledge, and grit, medicine could always deliver. This is what I was trained to believe, and what I so deeply want to believe: improving patient’s lives should be the goal. Defining “improvement,” however, must be framed appropriately. Gawande suggests our framing may be limited by the narrow scope of healthcare:

“The problem with medicine and the institutions it has spawned for the care of the sick and the old is not that they have had an incorrect view of what makes life significant. The problem is that they have had almost no view at all. Medicine’s focus is narrow. Medical professionals concentrate on repair of health, not sustenance of the soul. Yet—and this is the painful paradox—we have decided that they should be the ones who largely define how we live in our waning days.”19

The Value of Palliative Care Goes Untapped

Even the phrase “waning days” makes most of us tune out. We think if our patient is not facing imminent death, then palliative care is not appropriate.15 But this further reflects our ignorance. The singular aim of palliative care is to give life to your days even if unable to add days to your life. PT should be similar, with an unrelenting commitment to quality of life. And yet, the overwhelming majority of my classmates will never sit through any formal education on palliative care. Even in medical schools where palliative education is a curricular requirement, the quality and extent are variable and largely lacking.20 If the very providers who are expected to discuss serious illness with patients do not know the value of palliative care, is it surprising these conversations are not happening?

Because we do not know how to have such conversations, we assume it must not be our problem. While providers in the rural hospital did not have the luxury of delegating tasks not directly related to their technical skillset, as specialists and adjunct services were scarce, the neurorehabilitation hospital providers were accustomed to division of labor so that everyone could become highly skilled at their narrow scope of practice.

While most in neurorehabilitation recognized that palliative care would be a good option for the patients battling brain cancer, no one took responsibility for making that recommendation to the patients. The rehab physicians thought it was the oncologist’s job. The oncologist saw tumor shrinkage on MRI so provided hopeful updates, with no preparation for the day the tumor would grow again. Therapists and nurses witnessed rapid functional decline but felt a transparent discussion with the family would be overstepping the oncologist’s wishes—a frequent barrier to transitioning to palliative care, as the physician’s communication during this time largely sets the tone for the discussions patients and families have with the rest of the team.15,21

In addition to the team power dynamics at play with therapists feeling voiceless, I found myself wrestling with my role as a student. I was actively undergoing palliative care education whereas the rest of the team was years out from school, if they ever received any formal introduction to palliative care at all. Only later did I realize this should have empowered me to take a more active role in team conversations, instead of allowing the seasoned therapists to “protect” me from the rehab team. When I did begin to see my essential role as an advocate, it prompted conversations with supervisors that alerted them to this important area for hospital-wide growth. However, it was too late for the patients I worked with as a student.

While plenty of time was spent pointing fingers, patients were going home without the resources they needed to successfully face whatever came next. One physical therapist predicted our patient would fall within one month of being home, her family was in way over their heads, and she would soon need to be carried downstairs for family game nights in the basement. I never encouraged the patient to ask more questions about the care she was receiving. She went home the next week with no mention of palliative services while we were sitting around making predictions about how quickly things would fall apart.

A Narrow Focus on Positivity

One neurorehabilitation therapist credited a culture of “toxic positivity” with the overwhelming refusal to accept the limitations of medicine and benefits of palliative care for the sake of providing unwavering hope. Other therapists have also noted, presumably through their own reflection, a tendency to overemphasize the positives, even when patients and families are open to wrestling with the negatives that mark serious illness.21,22 It is as though medical advances are making us feel invincible even as we are faced with glaring limitations of the human body. Gawande offers an alternative view to our often-narrow approach:

“If to be human is to be limited, then the role of caring professions and institutions – from surgeons to nursing homes – ought to be aiding people in their struggle with those limits. Sometimes we can offer a cure, sometimes only a salve, sometimes not even that. But whatever we can offer, our interventions, and the risks and sacrifices they entail, are justified only if they serve the large aims of a person’s life. When we forget that, the suffering we inflict can be barbaric. When we remember it, the good we do can be breathtaking.”19

As Gawande argues, if the point of palliative care is to maximize quality of life on this day, shouldn’t that be something we all advocate for? If my patient wants to play with her grandkids, shouldn’t the PT plan of care promote that goal? While my training equips me to provide floor transfer practice, a wheelchair with postural reinforcements, or adaptations that compensate for a hemi extremity, none of these options are meaningful unless they align with what matters to the patient.17 The intervention selected must be informed by illness trajectory, as predicted by diagnosis but more importantly by patient priorities as their condition evolves.17

Beyond alignment with goals of care through intentional collaboration with the patient and context provided by illness trajectory, multiple authors have emphasized SDOH as an important concept when considering palliative care implementation.6,16,17 Furthermore, suffering in the context of serious illness is compounded by the experiences of social injustice across the lifespan.16 Those most impacted by this gradient of disease burden are least likely to access or maintain palliative care resources when needed.16

Tina’s case demonstrates just this, as she received short-lived, informal palliative care in the acute versus community setting, which is reportedly common for those living in poverty.16 Conversely, my neurorehabilitation patients were receiving medical care earlier in their disease progression and had the socioeconomic resources to use community-based palliative care. However, other expectations driven by societal perceptions of terminal illness and the privilege of healthcare access deterred these patients from recognizing the potential benefits of palliative care, emphasizing that the impact of SDOH on healthcare access and utilization is quite nuanced.

 

Uncovering the Large Aims of Life

Prioritizing “the large aims of a person’s life”19 is especially important when existing medical evidence provides no clear options for curative treatment. The wife of my second neurorehabilitation patient with glioblastoma was navigating this tension. She knew that fighting for a longer stay at the neurorehabilitation hospital would maximize his physical gains. At the same time, she didn’t want him missing winter holidays with the kids or opportunities to see his son compete in college athletics. However, she was sadly unaware of how narrow his margin for physical improvement was given the stage of his tumor. Both the patient and his beloved wife’s quality of life were reduced as they kept telling themselves he was in the best place for neurorehabilitation. This was true, but his hospital stay far outlasted the amount of time required to realize that none of the patient’s or family’s top priorities included being able to independently walk household distances.

These examples highlight the critical role that care-planning conversations play in palliative care. Paul Kalanithi said:

“The physician’s duty is not to stave off death or return patients to their old lives, but to take into our arms a patient and family whose lives have disintegrated and work until they can stand back up and face, and make sense of, their own existence.”23

The Benefits of Care-Planning Conversations

This is the goal of care-planning conversations: not to make everything right in a patient’s world, but to help them understand the good, the bad, and the ugly of the world they find themselves living in.13 Palliative care opens the door to conversations about a patient’s values and preferences for end-of-life care, ideally when patients have the cognitive faculties and energy to engage in such a conversation. Failure to have open conversations with patients early on may be the greatest pitfall in delaying enlistment of palliative services.

Care-planning conversations clarify what patients understand and prioritize in light of their serious illness. Often, patients do not have a realistic view of their condition due to an avoidance of clarifying conversations, as was the case with my neurorehabilitation patient. Naturally when faced with a life-altering diagnosis, my female patient and her family wanted all possible treatments. However, as chemo and radiation therapies began, her remarks surprised me. She was shocked at how her body was changing, yet her experience closely mirrored textbook side effects. With each new symptom, she re-lived shock and, when she became incontinent, horror.

It seemed that her expressed interest in curative treatment was taken as permission to expose her to unknown side effects without a conversation to determine if she was willing to live with the downstream effects of her decision to aggressively fight a cancer with miniscule chances of remission. Her frequent endorsement of her medical team and statements about the doctors knowing best may have been part of her maintaining a positive outlook to cope with the emotional roller-coaster of her diagnosis. However, it also emphasizes the inherent power imbalance when patients with serious illness interact with healthcare providers, regardless of their own education, resources, or familiarity with the medical field, as discussed by one researcher experiencing the same diagnosis as those her academic work centered on.24 Although my neurorehabilitation patient’s SDOH were predictive of better outcomes than Tina’s, power dynamics were nonetheless at play in the conversations between patient and provider, contributing to an avoidance of important conversations.

To emphasize the importance of conversations about treatment options and establishing goals of care with a terminal diagnosis, one group investigated the impact of palliative care on quality of life, mood, and length of survival for patients with terminal cancer. Patients receiving standard care plus palliative services reported better quality of life and mood, experienced less suffering, and lived 25% longer than patients only receiving standard care.25 As Gawande bluntly noted:

“Our decision making in medicine has failed so spectacularly that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality.”19

The Need for a Greater Acceptance of Mortality

When mortality is discussed in neurorehabilitation settings, it is unrecognizable or contentious.26 Where patients, families, and clinicians have some awareness of the terminal nature of the illness, death feels “inevitable” but “unacknowledged.”26 This is despite patients and families emphasizing time investment and clear communication as important components of care for critical illness13,15—a conversation that cannot rightly happen through ambiguous allusions to mortality.26 Physician uncertainty, patient/family denial, time, and a desire to maintain hope have been cited by providers as reasons to avoid direct conversations about death despite its likely nearness27. However, these reasons prioritize the provider’s comfort at the expense of the patient. Providers working in close proximity to death and suffering report experiencing lasting emotional distress that is often managed through detachment and/or suppression due to workplace expectations and temporal limitations, common sentiments that may contribute to an aversion to care-planning conversations as a means of self-protection.11,12

The Vital Role of Therapists

In most settings, therapists spend more time with patients than other providers, so are afforded the gift of time, which physicians report they lack27 and patients say they need.13,15 Thus, it is crucial that physical therapists actively fight against the documented tendency to focus only on positives, treat death as an “object to be managed,” and avoid uncomfortable conversations among peers.21,22,26 Instead, we have an essential role in the ongoing dialogue surrounding care-planning and goals-of-care conversations, often with unique insight to patient’s preferences and motivators that, if gathered and shared appropriately, would allow all team members to provide care in alignment with patients’ needs.

While my time knowing Tina was brief, I witnessed the evolution of her care-planning conversations. During her hospital admission, she understood that the cancer riddling her body was going to kill her. She understood that going home alone was unsafe. She understood that further medical treatment was available, but unlikely to offer substantial benefits. Her wishes were clear. With this knowledge, the team set out to ready her for home. In her final days when it became obvious this would no longer happen, the conversation evolved with her medical status but never removed Tina from the center. While working with Tina, I happened to pick up Paul Kalanithi’s book, written in the final days of his training to become a neurosurgeon and his battle with terminal cancer.23 Together, his words and Tina’s final days encapsulate care-planning conversations done well:

“The tricky part of illness is that, as you go through it, your values are constantly changing. You try to figure out what matters to you, and then you keep figuring it out… Death may be a one-time event, but living with terminal illness is a process.”23

 

Social Expectations Influence Acceptance

Tina seemed far more comfortable with the declaration that medicine could no longer offer her a prolonged life worth living. Unlike patients at the neurorehabilitation hospital who were more accustomed to financial resources, easy healthcare access, and getting the results they asked for, the patients I saw in rural America seemed better at identifying when the healthcare system could no longer help them. Sadly, this may be because they are more accustomed to being failed by a system that is largely stacked against them.7,10,16 As healthcare providers, we assume people always want all medical interventions that we have to offer. What we forget, however, is that there is almost always something medicine has to offer.19 Perhaps the skepticism for medicine—or expectation for scarcity—in rural America10 was of service in some ways. Families and patients were far more willing to accept that no other good could come from sticking in another tube, running another test, or consulting another specialist. Doctors did not assume that showing up to the hospital gave permission to do all they were trained to do in school. Bringing up palliative care was always a legitimate option.

With the elevated level of care, however, the general assumption seemed to be that if patients showed up for neurorehabilitation, they were not interested in any sort of palliative care discussion. This may be an assumption fairly made, as many families do refuse to consider that a terminal diagnosis might actually take their loved one’s life.15,27 It becomes problematic, however, when we assume all patients and families have this view at all points of their disease progression. Furthermore, it is unfair to expect them to know what palliative care has to offer when, as discussed previously, most who have spent years to become a healthcare provider do not know themselves nor do they feel comfortable having these conversations with desperate patients and families.15,28 The challenge becomes figuring out what the patient knows, what they expect, and what events will change those expectations. Viewing practice through a palliative care lens guides this “figuring out” process and serves as a promising approach for rehabilitation professionals caring for patients with serious illnesses.

 

Moving Forward With Palliative Care

So, why is palliative care something that healthcare providers, patients, and the public seem so hesitant to embrace? By allowing the narrative of my own patient experiences to drive my critical analysis of this issue, I have gained a more nuanced, thorough view of factors at play including healthcare’s traditional scope and structures that do not cater toward the large aims of a patient’s life; provider, patient, and family assumptions that palliative care represents failure; and social expectations that demand neurorehabilitation focus only on restoration, especially for those with socioeconomic advantages that allow them to access cutting-edge care.

Moving forward will require thoughtful consideration of SDOH,6–8,16 current challenges with palliative care structures,13,17,18,27 and diverse perspectives of suffering.16,26 Healthcare providers interact with human suffering on a regular basis and have the responsibility and the privilege to ensure that these patients receive the best possible care and outcomes that align with the patient’s wishes, regardless of the interacting barriers and facilitators at play. For patients experiencing serious illness, palliative care offers a helpful alternative to the narrow focus of our medical-dominated system that governs patient care today.

Integration of palliative perspectives and principles into PT practice will require critical analysis of care provided to those with a serious illness in a way that addresses power dynamics, SDOH, and stakeholders’ assumptions in order to work toward a more just approach that upholds human dignity across all stages of illness and life. Practicing physical therapists and those responsible for educating the next generation have an important role in advocating for this shift in practice. This is no small task but one that we must embrace if our patients experiencing serious illness are to receive the care and life that they deserve.

*Patient names and identifying details have been altered to protect patient privacy.

References

  1. About Palliative Care. Center to Advance Palliative Care. Available at: https://www.capc.org/about/palliative-care/. Accessed November 10, 2023.
  2. Thille P, Gibson BE, Abrams T, McAdam LC, Mistry B, Setchell J. Enhancing the human dimensions of children’s neuromuscular care: piloting a methodology for fostering team reflexivity. Adv Health Sci Educ. 2018;23(5):867-889. doi:10.1007/s10459-018-9834-1
  3. Nixon SA, Yeung E, Shaw JA, et al. Seven-Step Framework for Critical Analysis and Its Application in the Field of Physical Therapy. Phys Ther. 2017;97(2):249-257. https://academic.oup.com/ptj
  4. Ng SL, Wright SR, Kuper A. The Divergence and Convergence of Critical Reflection and Critical Reflexivity: Implications for Health Professions Education. Acad Med. 2019;94(8):1122-1128. doi:10.1097/ACM.0000000000002724
  5. McCorquodale L, Kinsella EA. Critical reflexivity in client-centred therapeutic relationships. Scand J Occup Ther. 2015;22(4):311-317. doi:10.3109/11038128.2015.1018319
  6. Horvick S, Dias N. Palliative Care Providers’ and Administrators’ Perspectives on Integrating Community-Based Palliative Care Using the Social Determinants of Health Framework. Palliat Med Rep. 2024;5(1):81-85. doi:10.1089/pmr.2023.0048
  7. Cohen A. The challenges of intersectionality in the lives of older adults living in rural areas with limited financial resources. Gerontol Geriatr Med. 2021;7. doi:10.1177/23337214211009363
  8. Vohra-Gupta S, Petruzzi L, Jones C, Cubbin C. An intersectional approach to understanding barriers to healthcare for women. J Community Health. 2023;48(1):89-98. doi:10.1007/s10900-022-01147-8
  9. Olson RE, Wen EX, Staines Z, Goh F, Marshall HM. Imperatives of health or happiness: narrative constructions of long-term smoking after undergoing lung screening. Health UK. 2023;27(6):1115-1134. doi:10.1177/13634593221099108
  10. Coombs NC, Campbell DG, Caringi J. A qualitative study of rural healthcare providers’ views of social, cultural, and programmatic barriers to healthcare access. BMC Health Serv Res. 2022;22(1). doi:10.1186/s12913-022-07829-2
  11. Mazzarelli A, Trzeciak S. Compassionomics: The Revolutionary Scientific Evidence That Caring Makes a Difference. 1st ed. Studer Group; 2019.
  12. Funk LM, Peters S, Roger KS. The emotional labor of personal grief in palliative care: balancing caring and professional identities. Qual Health Res. 2017;27(14):2211-2221. doi:10.1177/1049732317729139
  13. Neiman T. Using Critical and Transformative Theory to Describe Basic Palliative Care in the Acute Care Setting. University of Wisconsin Milwaukee; 2018. https://dc.uwm.edu/etd/1882
  14. Newbury J. Reflexivity in a study of family carers in home palliative care: a personal account. Nurse Res. 2011;19(1):30-36.
  15. Broom A, Kirby E, Good P, Wootton J, Yates P, Hardy J. Negotiating futility, managing emotions: nursing the transition to palliative care. Qual Health Res. 2015;25(3):299-309. doi:10.1177/1049732314553123
  16. Rowley J, Richards N, Carduff E, Gott M. The impact of poverty and deprivation at the end of life: a critical review. Palliat Care Soc Pract. 2021;15. doi:10.1177/26323524211033873
  17. Maxwell TL, Hanlon AL, Naylor MD. A systematized approach to advancing the quality of community-based palliative care. Am J Hosp Palliat Med. 2022;39(8):951-955. doi:10.1177/10499091211065173
  18. Sawyer JM, Higgs P, Porter JDH, Sampson EL. New public health approaches to palliative care, a brave new horizon or an impractical ideal? An integrative literature review with thematic synthesis. Palliat Care Soc Pract. 2021;15. doi:10.1177/26323524211032984
  19. Gawande A. Being Mortal: Medicine and What Matters in the End. Macmillan Audio; 2014.
  20. Horowitz R, Gramling R, Quill T. Palliative care education in US medical schools. Med Educ. 2014;48(1):59-66. doi:10.1111/medu.12292
  21. Setchell J, Abrams T, McAdam LC, Gibson BE. Cheer* in health care practice: what it excludes and why it matters. Qual Health Res. 2019;29(13):1890-1903. doi:10.1177/1049732319838235
  22. Setchell J, Dalziel B. Using critical reflexivity to enhance clinical care: a clinician perspective. J Humanit Rehabil. Published online 2019. Available at:

About the Author(s)

Christina Thomas, PT, DPT

Lorem ipsum dolor sit amet, consectChristina Thomas, PT, DPT is currently the neurologic physical therapy resident at Memorial Rehabilitation Institute and Nova Southeastern University (Ft. Lauderdale, Florida). She received her undergraduate degree in neuroscience at the Georgia Institute of Technology (Atlanta, Georgia) and her Doctor of Physical Therapy from Creighton University (Omaha, Nebraska). During her PT education, Christina was deeply struck by the unique experiences of the patients she learned from and by how physical therapists could impact their patients far beyond the physical aspects of rehabilitation. She sees ongoing reflection as an essential component of her development as a clinician and is dedicated to being a neurorehabilitation professional that consistently integrates clinical research findings with the humanities for the good of her patients.etur adipiscing elit. Ut elit tellus, luctus nec ullamcorper mattis, pulvinar dapibus leo.

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A Healthy Neck Should Disappear: a Phenomenological Anatomy of ‘Body-With-Neck-in-the-World’ to Inform Clinical Research and Practice https://jhrehabredesign.ecdsdev.org/2024/09/23/a-healthy-neck-should-disappear-a-phenomenological-anatomy-of-body-with-neck-in-the-world-to-inform-clinical-research-and-practice/ Mon, 23 Sep 2024 21:20:33 +0000 https://jhrehabredesign.ecdsdev.org/?p=10715

A Healthy Neck Should Disappear: a Phenomenological Anatomy of ‘Body-With-Neck-in-the-World’ to Inform Clinical Research and Practice

David M. Walton BScPT, MSc, PhD & Michelle Kleiner PT, PhD & Pulak Parikh MPT, DPT, PhD, FCAMPT

Table of Contents

Abstract

Neck pain continues to impose a large global burden, and syntheses of treatment evidence indicate generally small effects of many treatment strategies. While the neck is biomechanically complex, we suggest that one reason for limited effects of neck pain treatment stems partly from undertheorized understanding of what it is to be a body-with-neck-in-the-world.

In this article, we draw on embodiment theorists, notably Merleau-Ponty and Leder, to conduct a phenomenological anatomy of “body-with-neck” with the intention of introducing otherwise ways of thinking about the neck— not only as a collection of tissues and structures but as a part of the body gestalt.

We consider the neck as a site of ‘potentiality,’ for both achievement and vulnerability, and attempt to contextualize the neck as a primary driver of lifeworld perception.

We finish with recommendations for how clinicians and researchers can adopt alternative conceptualizations of what the neck is, what it is meant to do, and how different strategies for creating knowledge about neck treatment may lead to innovations in evaluation and management of neck pain.

Introduction

The neck, skeletally delimited as the region comprising the 7 cervical vertebrae, is a critical structure for human survival. More than a stack of bones, the neck collectively contains and protects several structures necessary for life and is the primary conduit through which oxygen and nutrients enter (and leave) the body. As the bridge between the cranial structures and the rest of the body, the nuances of neck motion and stability have been subject to centuries worth of anatomical dissection and biomechanical exploration (e.g.,1). Second only to low back pain amongst musculoskeletal conditions, neck pain represents the 6th highest burden of years lived with disability globally.2 

Identifying specific tissue pathologies that can explain neck pain has been a focus of medical inquiry for years. In 1886 Oppenheim3 debated the nature of ‘railway spine’ (a 19th-century precursor to whiplash) as a disorder of tissue damage, against Page4 who at the time argued that the symptoms of neck pain experienced by some people after rail travel incidents were more aligned with emotional trauma. Since that time several quantitative studies have found support for some tissue lesions; for example, clinical trials indicate that about 40% of people with chronic neck pain arising from whiplash-associated disorder (WAD) show signs of facet dysfunction.5,6 Similarly, there is a growing body of evidence supporting strong and consistent associations between neck pain and emotions such as fear or depression.7,8 Yet, with few notable exceptions syntheses of empirical evidence on interventions for ‘non-specific’ or musculoskeletal neck pain have generally reported effects that are small or of questionable clinical significance regardless of the treatment investigated.9–11 Such findings raise important questions about the very nature of neck pain and what it is that intervention is meant to achieve, and why, despite decades of research, the relative global burden of the condition continues to rise.12

A sound point of departure is to consider the ways that knowledge about the neck, neck pain, its evaluation, and its management, have been created. The emergence of post-positivism as the valorized epistemology in Western medicine has largely informed the way the neck is understood and studied. What is currently known about the neck and neck pain is overwhelmingly the result of quantitation of human anatomy and experience. In the field of rehabilitation, patient reported outcome measures (PROMs) have become the standard metric of clinical research, intended to quantify the experience of neck health as perceived by the person being queried.13 One way to conceptualize PROMs is as tools comprising a set of standardized questions that implicitly define the boundaries of ‘healthiness’ with clearly- defined rating scales. Similarly, many approaches to clinical or observational evaluation of the neck involve the observer (e.g., researcher) comparing elements of neck function, such as range of motion or strength, against evidence-based or tacitly- understood norms. Such tools are intended to translate complex lived experiences of neck health (or lack thereof) into a universal language of numbers, thereby allowing exploration through inferential statistics.

Throughout this article we will use the term ‘dysfunction’ for ease of presentation and as a term familiar to those in the field. However, we acknowledge that the concept of dysfunction has itself been under-theorized through much of the extant literature, as have the thresholds between acceptable function and unacceptable dysfunction. For our purposes, dysfunction will refer to any deviation from the inherent, unconsidered state of effortless existence that each person uniquely perceives as a healthy ‘body-with-neck-in-the-world.’ Dysfunction therefore can refer to any neck-related experiences that disrupt the seamless integration of the body, including any or all of the following: pain, sensitivity, restricted mobility, and discoordination, among others.

Whilst the natural sciences have revealed a wealth of information about what can be measured and known about the neck from a physical perspective (e.g., findings based upon the shapes and slopes of articulating surfaces and surrounding musculature) and how the neck moves, missing is a critical exploration of how the neck is experienced. As an anatomically-defined regional target of treatment by providers of rehabilitation such as physiotherapy, chiropractic, massage, acupuncture, and medicine, we propose that a critical interrogation of ‘body-with-neck-in-the-world’ can help to move research and practice toward innovation and otherwise ways of understanding.

In this article, we probe taken-for-granted assumptions of the neck through a critical social science lens. We are motivated in part by our own history as providers of clinical physiotherapy services, as academics in the field of neck pain and clinical measurement, and at times as people who live in bodies with painful necks. We are further motivated by the theorizing of Nicholls and Gibson14 who have previously undertaken a sociocultural meditation on the body in the context of physiotherapy practice, considering it not as an anatomical collection of tissues but rather endorsing a lens through which the body is understood as a fully embodied and culturally-situated site of perception, cultural capital, and political action. We will attempt to both contract and extend their thesis by first narrowing the focus to a specific region of the body, thereby creating space to explore it in considerable depth.

We start by questioning common clinical assumptions about what the neck is, what it is meant to do, and how neck dysfunction is routinely conceptualized, measured, and treated. From there, we move to a ‘phenomenological anatomy’ of the neck as site of perceptual experience, drawing upon works from theorists like Leder15 and Merleau-Ponty.16 We finish by considering alternative strategies for exploring and creating knowledge about the neck, particularly about the way dysfunction of the neck has been assessed, treated, and deemed recovered in traditional rehabilitation practice.

Positionality of the Authors

Prior to embarking, it is helpful to position ourselves and make clear our positionality. The authorship team comprises a full-time tenured academic (DW) with prior clinical experience who is routinely included in lists of leading global scholars in neck pain research17,18 and two PhD-trained clinician-scientists (PP, MK) with expertise in management of neck pain and related disorders. The ideas put forth in this manuscript are the results of over 60 combined years of experience in the field, driven largely by the lead author’s knowledge of the evidentiary base for neck pain intervention and several years of reflection on research in the field. All authors have interest or expertise in the valorization of pain and disability PROMs as the primary, and often sole, indicator of whether an intervention ‘works,’ with particular interest in those used in the conservative rehabilitation space (e.g., physical therapy, chiropractic). All authors have been educated in alignment with the traditions of evidence-based practice in musculoskeletal (MSK) rehabilitation, including use of quantitative outcomes, manual therapies, and exercise through knowledge based on post-positivist epistemologies. Each have approached the ideas presented herein through different paths but with a similar tacit sense that perhaps the way evidence in the field has been constructed, generated, interpreted, and applied would benefit from engagement with critical theory about the body-with-neck-in-the-world.

 

A Sociohistorial View of Neck Pain and Dysfunction

The Neck as a Mechanical Construct

As a collective of moving parts, the neck is a mechanical marvel. Seminal thinkers in anatomy and biomechanics like Panjabi19, Taylor and Twomey20, and Bogduk1 have previously provided detailed information on the structures and mechanical function of the neck, making the invisible visible through cadaveric or imaging studies and thereby enabling the types of assessments and interventions available to many clinicians. It is widely accepted, for example, that a typical neck includes 7 cervical vertebrae that articulate through 6 intervertebral discs, 8 pairs of zygapophyseal joints, and 7 pairs of uncovertebral joints. Together those move in unison through coordinated contractions of deep, intermediate, and superficial muscle layers across very precise axes of rotation to result in multiplanar movement in three-dimensional space. Functionally, the multiple articulations that comprise the neck can be conceptualized as a single joint in that it is impossible to exercise volitional control of, say, only the 3rd on the 4th cervical vertebra. So deep is current knowledge of neck biomechanics and control that it is possible to elicit very precise and predictable movements of the neck through electrical stimulation of specific muscles.21

The bones of the neck further support and protect structures of critical importance to sustaining life, including axons of the most caudal cranial nerves, cervical levels of the spinal cord, the vertebrobasilar and carotid arteries, and superior cervical ganglia of the autonomic nervous system. The neck includes the pharynx that bifurcates into the esophagus as the primary conduit for delivering nutrition into the body, and the trachea for exchange of lung gases. Yet the neck is also highly mobile. That it permits movement through all planes while protecting the viability and function of some of the most critically- important structures for human life without requiring conscious control renders the neck a site of particular intrigue.

In an orthodox physical rehabilitation context, neck (dys)function is commonly determined by an external examiner (clinician) who observes and compares the neck as it moves through the 3 cardinal planes of motion: horizontal (rotation), sagittal (flexion/extension), and frontal (sidebend). The strength of the neck muscles may be graded against a practical understanding of what is ‘normal’ for a person of similar age and sex. Some disciplines, notably physiotherapy, chiropractic, and osteopathic practice, will employ passive manual evaluation techniques in which external pressures are applied by the examiner’s hand to individual cervical levels that can not otherwise move independently, and then through those same hands sense the pliability of tissues and quantity of movement available against a tacit knowledge of what is typical. Per Leder,15 the clinician performing such an assessment is a ‘hermeneut,’ using touch, sight, or sound to “read the ‘text’ of the body for what it has to say about the corporeal depths.15,p51

Our intention is not to trivialize these evaluation competencies nor their resulting interventions. Indeed, there is evidence that, for example, the use of manual therapies for people with chronic neck pain are associated with improvements in scores on standardized PROMs and other indicators of neck health such as sensitivity to pressure or head-body coordination.22–24 Such evidence indicates that uncoordinated or suboptimal function of specific parts of neck anatomy may well be a precursor to the experience of dysfunction, although importantly, this statement requires a presupposed acceptance that PROMs and coordination measures are important indicators of neck health.

Yet for any nuanced ability to ‘evaluate’ the function of the various parts of the neck, we consider that by reducing focus to the finer details there may be a risk that we lose what Merleau-Ponty would consider the gestalt of what it means to be a body (including a neck) in the world. Per Merleau-Ponty, the body gestalt refers to perceiving or experiencing the body not as a collection of parts upon which to impose empirical reduction, but as a single meaningful whole with pre-reflexive meaning.16 While we acknowledge that specific manual pressures applied to the right person at the right time can positively affect some standardized metrics of neck function, this seems to be an incomplete picture of what it is to ‘be’ a body-with-neck-in-the-world.

 

Interrogating Practices of Neck Rehabilitation Toward Recovery

We turn now to a critical reflection on the common practices of physical rehabilitation providers when engaging with the person with neck pain. The intention here is not critique for the sake of critique; rather, by ‘troubling the waters’ of taken-for-granted practices we will attempt to create space for reflecting upon dominant practices and be open to alternatives that may emerge from the turbulence.

Evaluating Neck Healthiness

As the primary, often implicitly- accepted discourse for determining whether an intervention ‘works,’ we consider how ‘healthiness’ of the neck region is typically evaluated. Clinical measurements, including those described in the prior section, attempt to quantify often unquantifiable and unobservable experiences, including such phenomena as pain and function. As latent constructs these are invisible to objective perception by either the experiencer or a third-person observer, meaning they require sound theorizing of what is being measured if clinical scales and tests are to be interpretable. Herein we find an epistemic void, in that nowhere are we able to find a prior theorizing of the neck beyond what Foucault25 has referred to as ‘anatomo-clinical’ projects about the neck, as an object of a researcher’s study, rather than of the neck as an irreducible part of Merleau-Ponty’s gestalt. Diagnostic imaging may reveal information about the structures of the neck, but does not reveal what it means to ‘be’ a body-with-neck-in-the-world. We might question what it is that a fulsomely- and accurately- mobile or strong neck enables in terms of one’s experience of being in-the-world. For example, what elements of safety, presence, connection, or perception are impaired when the sensory apparati of the head cannot be easily oriented toward life-world objects?

Patient-reported outcome measures (PROMs) have become recognized as necessary pillars of patient-centered care13 and are increasingly the basis upon which diagnosis, prognosis, and treatment decisions are made. They are intended to quantify respondent experience insofar as they are completed by the person seeking care rather than the care provider. As tools used to screen for dysfunction, predict a future health state, or evaluate effectiveness of intervention, PROMs offer a ready platform from which to interrogate clinical practice of assessment.

To make this relevant to the neck, we consider the Neck Disability Index (NDI), by all accounts the most popular PROM globally for assessing neck-specific ‘functional status.’26 It comprises 10 items each proposed as indicators of some hidden truth about the actual health status of the neck. To complete it, the person with neck pain selects the phrase most reflective of their recent experiences during pursuits such as driving, lifting, and reading. To borrow another concept from Merleau-Ponty,16 the items on a PROM most often reflect the ‘I-can’ aspect of what it is to be a body-with-neck-in-the-world; I can drive, I can lift, etc…. This conceptualization of PROM items presupposes that a neck in dysfunction will manifest as ‘I-cannot,’ or difficulties performing these specific tasks. Per classical measurement theory, the items populating such a scale are drawn from a theoretically- infinite number of possible indicators of the latent construct of ‘neck function,’ the patient’s response to each giving a clue as to where they lie upon some invisible continuum of healthiness. This continuum can be conceptualized as ranging from “completely disabled” to something conceptually opposite of that— “completely abled” perhaps. These appear to be based on what is widely accepted as ‘normal’ ability for a healthy neck.

However, despite its ubiquity, a brief review of the development of this scale27 reveals a lack of sound theoretical framing for what is being defined as neck function. By providing short phrases related to “normal” functions such as driving, lifting, or reading, there is a taken-for-granted assumption that these are universally desirable and that a dysfunctional neck necessarily interferes with these activities while a healthy neck necessarily enables them. The implication, therefore, is that those who indicate difficulty with any of these activities cannot be a body with a “healthy” neck. This aligns with what prior scholars28,29 have alluded to as ableist or objectifying undercurrents in much of what are referred to as ‘patient-centered’ clinical measurement tools and, we propose, fails to account for the vast, pre-reflective potentiality of a body-with-neck-in-the-world.

To take this relevant example further, the NDI includes a question regarding difficulty driving. Presumably very few people desire the ability to drive simply to depress pedals, sit in traffic, or produce exhaust. Rather, driving in this context may represent an ‘I-should’ to some people (“I should be able to drive my car”; “I should be able to get to work”). From a social capital perspective, the ability to drive their expensive car may position some at a higher social standing over those who own a less impressive car (or none at all). For others, environmental conscientiousness may position them as objectors to the very notion of driving, while some cultures may not valorize independent driving as much as do Western societies. Which is to say, without further context, such taken-for-granted assumptions risk broadly missing the experience of body-with-neck-in-the-world. Here we also encounter an important challenge to health- scale interpretation and causal assumptions more broadly; while a freely mobile neck may contribute to the experience of safe or comfortable driving, the perceived ability to drive a car does not assume a healthy neck any more than the inability to drive assumes an unhealthy neck. We propose that this is one reason that relying solely on this kind of PROM as the primary indicator of ‘recovery’ from neck dysfunction, as the majority of evidence for neck pain has been based, may be problematic.

We note that clinical assessment of a (dys)functional neck rarely, if ever, considers it as a broader and non-reducible component of embodied existence. That is, the clinician rarely considers ways that the status of the neck may interfere with, or change, the perceptions of the sufferer’s lifeworld and their experiences within it. Issues of aesthetics, vulnerability, ecstasy, perception, or interpersonal connectedness seem to be rarely explored and even more rarely are the target of intervention by rehabilitation providers. Per Gibson (2016):

“We can continue to measure function, symptoms, activities of daily life, affective states, and all the other “domains” of interest. But we must cease to assume a direct relationship between these phenomena and the goodness of a life.”30, (p. 69)

We propose that casting a phenomenological lens on neck health enables evaluative practices that center personally- meaningful experience through considering not only how the neck functions biomechanically, but also how it contributes to the overall gestalt of being-in-the-world. Clinical interactions may then take the form of inquiring about the person’s experiences of engagement with their world— moving beyond their ability to work or physically conduct daily activities. The clinician could query whether the patient has experienced: changes in their perceptions of or connections with the world and people around them; feelings that their social standing has been affected by their neck dysfunction; or any increased sense of vulnerability to harm (including physical, social, political, or financial harms). These represent just some examples of an expanded interpretation of neck function and how an exploration of phenomenological anatomy can complement that of biostructure in clinical rehabilitation practice.

Treatment for Neck Dysfunction and Determination of Effectiveness

When asked to reflect about their treatment goals, most health professionals would likely endorse ‘recovery’ as a key outcome of effective care. However, both empirical and anecdotal evidence indicate that when pressed for how the concept of ‘recovery’ is understood, opinions and beliefs vary widely.31–33 Some may proffer concrete targets such as ‘return to work’ or ‘full range of motion’; others will attempt to align recovery with other nebulous concepts like ‘function,’ ‘mobility,’ or ‘quality of life.’ Still others will opine that recovery is whatever the patient says it is— an admirably patient-centric view of practice yet one that eludes standardized metrics and thereby seems, on the surface, misaligned with what is widely accepted as ‘evidence-based practice.’

Yet despite even these conceptualizations of recovery, and based on our own experiences as clinicians, much of the rehabilitation project of treatment is driven by an almost hyper-thematization of the dysfunctional body, or body part(s), that are the target of the practitioner’s focus. For example, patients are encouraged to become aware of their neck throughout the day, set reminders or timers to perform very specific exercises, and adopt mindful movement such that exercises are performed correctly. Patients may be instructed to palpate the muscles of their neck, feel subtle movements of the joints, adopt ‘good’ postural alignment, apply creams or thermal agents, or massage the tissues, all forefronting the neck into conscious embodied awareness.

The history of physical rehabilitation indicates that there is indeed value to be gained from this type of reflective thematizing as an initial step toward gaining some mastery over the dysfunctional body.34,35 Yet, per Merleau-Ponty,16 Leder,15 and other embodiment scholars, this cannot be the end to which rehabilitation strives. At some point the body region must again disappear from awareness, moving from a reflective to a pre-reflective part of the body gestalt. Through our experiences in both clinical practice and training programs, rarely is recovery defined as ‘the problematic region of the body is forgotten.’

 

Toward a Phenomenological Anatomy of Body-With-Neck-In-The-World

We turn now to considering otherwise ways of thinking about body-with-neck-in-the-world. We acknowledge the work of prior scholars who have undertaken the project of thematizing health and function from a first-person rather than third-person perspective,36,37 many doing so through phenomenological inquiry to “understand and describe lived experiences.38(p 97) For example, the works of Heidegger39 and Merleau-Ponty16 provide ways of thinking about the phenomenological aspects of being-in-the-world, and position the body not as passive object but as active subject that co-constructs the meaning of “world” and “health” through complex, often irreducible interplays between perception, consciousness, environment, potentiality, and intersubjectivity.

Merleau-Ponty theorized that the body is the primary way through which a person experiences and understands the world, and the world is the primary way through which a person understands themselves.16 Accordingly, he suggested that as embodied beings, bodies, minds, and the world are inseparable.

Relevant to our thesis, the actional fields of most primary sense organs (e.g., ears, nose, and mouth) are fixed in position on the head, meaning that any attempt to redirect those sense organs to a perceptual lifeworld requires an accurately mobile neck. The ability to rotate lends the eyes a larger perceptual field, but here again the mobility of the neck and its reflex-mediated connections with the eye muscles permit a much wider field of perception. As Leder reminds us, the face “serves as an originary locus of communication and perception,15 (p 29) and as the orientation of the face is dependent on the neck, it is difficult to discuss perception without discussing the neck. This permits us to consider Merleau-Ponty’s principles of intentionalitythat to which consciousness is directed, and potentialitythe tacit ‘I can’ or the pre-reflectively- known collection of available movements and functions that allows intention to be enacted when needed.

The Neck as an Aspect of Intended Communication

As an analogy to frame the first part of this discussion, consider for example two strangers sitting with friends across a crowded nightclub, who suddenly make eye contact with a romantic spark. In this example, the neck participates as both subject and object of perception. While it would be inaccurate to suggest the neck itself does the perceiving, more important is the role of the neck in directing the primary sense organs of the head toward important stimuli. Having caught each others’ attention, the neck remains in play as part of a broader embodied intention, enabling interpersonal connection but still not a central focus of conscious awareness. A thick muscular neck or long slender neck can tacitly signal health and vitality. The flirtatious tilt of the head, the quick and playful turning away when eyes meet, throwing the head back in laughter, all are made possible by a well-functioning body-with-neck— although importantly for a discussion on dysfunction to come, none require conscious reflection. As the night wears on and our new couple gets closer, the sensuality of the neck as an erogenous zone may be forefronted, as might the neck as site of thermal regulation when the two venture into the cold night.

This simple example allows us to thematize the neck as a driver of perception and how it is both foregrounded and backgrounded in interpersonal communication, physiological regulation, social capital, and physical intimacy. Yet this is an incomplete view of the embodied potentiality of the neck. As a site that facilitates safety and security, a well-functioning neck permits the ability to embed oneself within interpersonal dynamics or to cope with unexpected adversity. We can see the ways a healthy neck is culturally grounded through common English colloquialisms that appear to belie tacitly-held understandings of the role of the neck in perception, emotion, and safety. For example, soldiers in the field of war may be instructed to ‘keep your head down’ or ‘keep your head on a swivel’ (constantly scanning one’s surroundings for signs of threat). After a bad loss, a coach may encourage his team to ‘keep your head up’ to exhibit pride. Those overwhelmed with responsibility may be ‘buried up to the neck’ in work. Even a cursory scroll through one’s Instagram feed will no doubt reveal self-portraits of people looking upward at their camera in an effort to stretch and smooth the skin of the chin and neck for the perfect ‘selfie,’ offering a glimpse into the assumption in many cultures that a neck with tight smooth skin represents vitality, youth, and fitness. A neck that can move rapidly and freely allows quick, often unconscious movement to avoid or absorb and dissipate impact from a fall or fist. Looking outside of stereotypically Western examples, we can see ways the neck can provide social capital in other cultural contexts, such as for the long-necked ring-wearing women of Myanmar’s Kayan tribe, the common African and Indian practice of supporting and balancing baskets atop the head during transport, and the neck skin as part of the body canvas for the Tā moko tattoos of the New Zealand Māori, as examples.

The Neck as a Vulnerable Point of Potential Violence

Importantly, the neck also represents a site of vulnerability and potential violence. As the location at which the esophagus and trachea bifurcate, the neck is the most likely site of aspiration and choking. The neck is widely accepted as the central site of vulnerability and dysfunction in whiplash-associated disorder, a condition so named due to the mechanism of rapid energy transfer between the thorax and head through the neck.40 It is a site upon which others can enact their own power for purposes of harm or oppression. Drawing one’s finger across the front of the neck while gazing at an opponent, mimicking a knife cut, is an almost universal sign of threat that is effective due to the tacit knowledge that the front of the neck is highly vulnerable to catastrophic harm. Suspending the body by the neck is the leading method of suicide in Canada.41,42 Strangulation represents one of the most common forms of physical harm in intimate partner violence.43 The neck is immediately and unambiguously thematized in the context of shackled prisoners or slaves, in hangings or lynchings, and one wonders if the experience of a painful or dysfunctional neck holds a greater sense of threat in equity-denied and -deserving groups.

 

Background Disappearance for Foreground Dys-appearance

Having positioned the neck as sites of both bodily potentiality and vulnerability, we next draw upon the thesis of Leder15 who extended the works of Merleau-Ponty. In states of relative health, Leder describes two types of bodily “dis-appearance”: focal, wherein the body structure is the site of perception while not being consciously perceived (as in the eyes that do the seeing but are not themselves seen); and background, referring to all other parts of the body supporting the act of perception without being directly involved in it. Per Leder:

“While in one sense the body is the most abiding and inescapable presence in our lives, it is also essentially characterized by absence. That is, one’s own body is rarely the thematic object of experience. When reading a book or lost in thought, my own bodily state may be the farthest thing from my awareness. I experientially dwell in a world of ideas, paying little heed to my physical sensations or posture.”15(p1)

Using this nomenclature and putting it within our context of potentiality and vulnerability, the neck functions less as a focal site of primary perception and more in the background to support and move the head and its primary sensory organs, allowing the eyes, ears, or nose to locate and fixate on a sight, sound, or smell. While the neck can be a site of perception, such as from the kiss of a loved one, the chill of a cool evening, or the attack of an assailant, per Leder a healthy neck should fade into background disappearance, as an enabling structure of the head and face that when functioning well is not a part of conscious embodied experience.

The ‘Hidden’ Neck…

Uniquely, the neck is even hidden from our view. We cannot gaze directly upon our own neck without the use of a mirror, invoking Merleau-Ponty44(p213) who writes, “…my body as given to me by sight is broken at the height of the shoulders and terminates in a tactile-muscular object.” Perhaps if we were to practice we may be able to perceive the elements of our neck— the movement of air through the trachea, the pulsing of arteries, or the movement of thyroid cartilage when swallowing. Even here, these are awareness of motility rather than passive ‘neck-in-space,’ providing no sense of what our own neck looks like, thereby contributing to an incomplete knowledge of self.45 We argue that, by virtue of being hidden from three-dimensional sight (assuming a mirror or photograph provides two-dimensional images only), by its background disappearance, and its relative lack of tactile acuity, nowhere on the surface of the body is this experience of corporeal alienation more relevant than the head and neck.

…Thrust Into Bodily Awareness

However, when illness or dysfunction (e.g., pain) strike and we find ourselves unable to quickly, accurately, easily, or completely orient the head to the environment, we propose that this experience can be conceptualized as a real or pseudo- disconnection from a lifeworld that is now less accessible. Drawing from Leder,15 the dysfunctional neck thrusts itself unnaturally into the center of bodily awareness while remaining outside of direct self-observation. Several prior scholars have explored the phenomenon in which pain or illness shrinks or distorts the experience of the perceptual world, as the body becomes acutely and all-consumingly foregrounded in consciousness46–48 perhaps summarized most concisely by Scarry49(p36) who states “the absence of pain is a presence of world, the presence of pain is the absence of world.Rather than residing in background disappearance (perceiving from the body out toward the world), pain or dysfunction severs parts of our ties with the world-as-known, thereby forcing the perceptual field to turn inward.

Here Leder introduces the alternative term ‘dys-appearance’— in that when in pain, a normally absent body region appears as a central object of perceptual awareness. When the neck has dys-appeared and forced itself into objective thematization, not only are we suddenly aware of what should be absent, but our tacit understanding of potentiality (abilities we have at the ready) is threatened. As a dysfunctional and dys-appearing body part becomes an object of the perceptual lifeworld, the experience is akin to a bodily “dys-unity.”15 Contrary to bodily tranquility or ‘at-homeness,’ dysfunction renders at least part of the body suddenly less capable, more vulnerable, perhaps painfully sensitive, or even disfigured, thereby distancing it from a usual or desirable state of security, intimacy, and connectedness. In this way Leder15 suggests that awareness of the corporeal body is not normally a part of the self, and that by forcing conscious but undesirable awareness of the painful or dysfunctional region, the very notion of ‘self’ is threatened.

 

Alternative Ways of Conceptualizing Clinical Evaluation, Treatment Outcomes, and Research On Neck Pain

Here we return to the practices of rehabilitation professionals when engaging with a person with neck pain or dysfunction, considering how those may be informed by our brief phenomenological anatomy of the neck. To summarize, and despite the focus on a single body part, we have thematized the neck as a location irreducibly incorporated within the gestalt of the lived body. While not a primary organ of perception, we have positioned the neck as a region that primarily supports and enables perception, safety, connection, and social capital. In this way, we propose that the neck plays a critical role in our phenomenological experience of the lifeworld. We have argued with the support of prior scholars that when in optimal health, the neck is rarely the subject of conscious thematization but is “alien-as-forgotten15 with potential for non-reflective action when and as needed. The experience of an itchy shirt collar, or the warming touch of a cashmere scarf, may temporarily foreground the neck, but even here these experiences are secondary to a different goal, such as tranquility or comfort (the urge to scratch an itch or to feel warm when out in the cold). We argue that where the neck is most commonly and acutely thematized is under conditions of acute intense stimuli, like the kiss of an intimate partner, the life-threatening grip of an assailant, the distress of choking, or pain and stiffness experienced after a car collision. It is with this thematization that we engage in the following conceptualizations of assessment and intervention.

For Clinical Evaluation and Outcomes

We propose that the concepts of embodied potentiality could contribute to the foundations for a critical theory of neck pain evaluation. Expanding upon the current practice of clinicians asking patients specifically about their neck, having them respond to standardized questions about possible functions on a PROM, or observing neck function through standardized tests, embodiment theory encourages consideration of how the ends to which rehabilitation strives could instead be viewed through the lenses of perception, embodied potential, and background disappearance.

The Neck and the Lived Experience. If these approaches were adopted, one would expect discourses for evaluation of dysfunction and recovery to center lived experiences of the body-in-the-world (e.g., concepts of perception, interpersonal connection, safety, and at-homeness) rather than the function of a single body part. From this context the clinician need not explore all aspects of the experience of ‘body-with-neck-in-the-world’ but rather explore the degree to which the neck occupies burdensome or unnatural conscious mindspace, or the ways that the sufferer’s perceptions of their world have changed.

As a concrete example, the works explored herein would suggest that the ends to which rehabilitation providers strive can shift from “how is your neck today?” toward “how much have you thought about your neck today?”; “does your world seem any different since your last visit?”; or “what is preventing you from feeling at home in your own body?”

‘Forgetting’ as an Aspect of Healing. By centering absence of the neck as a key indicator of neck function, the goal to which clinicians can strive is not that the patient is doing their neck exercises properly and routinely or are more aware of their neck postures throughout the day, but rather that the hyper-specific neck exercises common to early rehabilitation eventually fade such that they are largely forgotten. In this context, one interpretation of a patient who admits to forgetting to do their rehabilitation exercises may signal a good outcome. Arguably, widely accepted PROMs like the NDI go part ways to accomplishing this in that not all items on that tool are phrased in specific relationship to the neck (e.g., “I can do as much work as I want”), although 7 of the 10 items on that measure do explicitly center ‘(neck) pain’ as the experience that is or is not permitting those activities to be performed. Decoupling the activities in that scale from the explicit experience of neck pain may go part way to centering absence as a desirable outcome, but the continued assumption that all activities in a standardized scale are equal contributors to all respondents’ sense of embeddedness within their lifeworld remains arguably problematic.

While standardized PROMs are likely to remain in use as an indicator of study effects, particularly owing to their firm entrenchment within current conceptualizations of quantitative rehabilitation research, the thesis presented here signals that alternatives exist. Some of these are described in the later section on research implications.

For Treatment

The anatomo-clinical projects of neck rehabilitation remain relevant despite the expanded considerations we have provided herein. If a freely and effortlessly mobile neck is part of the gestalt of a comfortable body-with-neck-in-the-world, then identifying and rectifying structural or mechanical impairments to function (e.g., restricted joints or uncoordinated muscles) fits both a traditional and this newer concept of neck health. However, if our thesis is accepted, we have opened the rehabilitation project to additional ways of thinking about ‘neck healthiness’ that should reveal paths to new intervention approaches, arguably ones that embrace the irreducible integration of what have been traditionally separated into biological, psychological, and social phenomena.

Considering security, connection, and perception. Some such interventions will continue targeting dysfunction that is conceptualized as being located internal to the patient receiving treatment, although perhaps with expanded considerations: beyond range of motion and strength, we can consider other aspects of security, connection, and perception. These could include intervention strategies to improve quickness and accuracy (for absorbing a blow or aligning sensory apparati), stability (for holding gaze during motion or prolonged postures), or even the role of the head and neck for communicating emotion (to enjoy laughter and intimacy, or to convey sadness), each of which requires comfortable and non-reflective freedom of neck movement. While this may raise more questions than answers, we believe this type of thinking will lead to expanded concepts of neck “exercise” and what the rehabilitation project is intended to achieve.

For Research

One way of approaching research through a different lens is to move qualitative or critical social scholarship from the margins to the center in discourses on evidence for neck rehabilitation, perhaps as a supplement to the field’s reliance on quantitative metrics or as a substitute. We note as possibilities the practice of mixed-methods research,24 arts-based data collection,50 or of “naturalized phenomenology” as described by Gallagher.51 Gallagher and others, themselves invoking prior works of Merleau-Ponty, have considered how phenomenology and the natural sciences can function in harmony rather than contention through embracing and interrogating the lived experiences of both the researcher and the participant, and embracing the complex issues of power, agency, and representation in the context of ‘knowing’ the healthiness of another person.

In that context, the participant in research on neck pain can be expected to be both the object of measurement, providing responses to well-theorized and meaningful standardized PROMs, for example, and also a partnered subject of the research in that they maintain agency and even co-design studies as a means of adding necessary richness to the interpretation of numbers on a scale.

The Value of the Lived Experience in Research. As an example, researchers could authentically engage with people with lived experience of neck dysfunction in the creation of research questions and methodological design. Such co-designed research might prioritize lived experiences as data through focus groups or interviews, to understand the reasoning behind their selection of a ‘3’ rather than a ‘4’ on a scale of pain intensity, for example. Additionally, such designs could explore the experiences of partners and participants related to the process and the study design itself, including the methods employed for measuring their health state. Importantly, these are not new designs (for example, see references 52–54) although they have been slow to penetrate neck pain research. We also note the emergence of accessible large language models (‘LLMs’ ), expected to allow participants to express their experiences of health or intervention in their preferred natural language and then be rapidly interpreted and, if necessary, assigned a rank of severity, content, or sentiment as an otherwise means of understanding experiences of health in a person with neck pain.

 

Conclusion

We have attempted to apply Merleau-Ponty’s theories of embodied phenomenology and Leder’s approach to “phenomenological anatomy” to the body-with-neck-in-the-world, with the intention of opening further dialogue on what a ‘neck’ is meant to be in both health and dysfunction. We acknowledge a tension throughout, in that we have simultaneously attempted to move away from reducing the rehabilitation project to individual body segments, while forefronting an individual body segment. However, heeding calls for more critical theory in physical therapy,55 we undertake this work as an alternative way of thinking about the projects to which rehabilitation strives. We acknowledge the departure from traditional thinking on these topics, but also endorse a view that by centering lived experience and concepts such as potentiality and bodily dis-appearance, physical rehabilitation evolves from arguably paternalistic decisions about the ‘right’ or ‘normal’ way to move or function toward a more emancipatory practice that enables full participation in a lifeworld for people with neck pain regardless of ability.

We further acknowledge that much of what we have endorsed signals a conceptual shift in the understanding of the neck that will require a community of supports and allies and a cultural shift in the rehabilitation community rather than individual practitioner work. We believe, however, that concepts like gestalt embodiment, potentiality, disappearance, lifeworld perception, and at-homeness represent potentially important contributions to a critical theory of clinical evaluation and measurement upon which further scholarship can build.

Importantly, none of this thesis should be interpreted as an indication that rehabilitation providers have been ‘wrong’ in their approach to resolving neck dysfunction. As a reminder, we ourselves are physiotherapists and clinical researchers. We further acknowledge that much of what we have described— the centering of patient narrative and experience over hard numbers— already occurs through interpersonal discourse and routine elements of clinical practice. We have further opined that through authentic partnership, patients can be subjects of practice and research and are better positioned to reflect upon things like their lived experiences of security, connection, or perception than are researchers who often lack the standardized tools for translating experience into numeric data. Accordingly, it is researchers— those charged with ‘creating’ the base of rehabilitation evidence— that may be most challenged through adoption of the ideas presented herein.

Acknowledgements

The authors wish to thank Dr. Gail Teachman, PhD (Western University) for her comments on an earlier version of this manuscript.

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  55. Setchell J, Nicholls DA, Wilson N, Gibson BE. Infusing rehabilitation with critical research and scholarship: a call to action. Physiother Can. 2018;70:301–302.

About the Author(s)

David M. Walton BScPT, MSc, PhD

David M. Walton BScPT, MSc, PhD is a Professor with the School of Physical Therapy at Western University (Ontario, Canada), cross-appointed to the Dept. of Psychiatry with the Schulich School of Medicine and Dentistry. He is co-Director of Innovative Solutions for Spinal Pain with Western’s CANSpine research group, co-lead of the Common Spina Disorders Think Tank within Western’s Bone and Joint Institute, co-lead of the kNOw-PAIN interdisciplinary initiative focused on knowing the pain of another person, and Associate Scientist with the Lawson Research Institute. Dr. Walton ranks amongst the world’s leaders in research productivity in the fields of neck pain and musculoskeletal pain assessment and evaluation.

Michelle Kleiner PT, PhD

Michelle Kleiner PT, PhD is a musculoskeletal physiotherapist and vestibular rehabilitation therapist. She has been practicing physiotherapy for over 30 years and is credentialed as a Fellow of the Canadian Academy of Manipulative Physical Therapists. Michelle and her clinic partners maintain a busy, multidisciplinary private practice in Ontario, Canada. Academically, she is an Adjunct Research Professor with the School of Physical Therapy at the University of Western Ontario. Her research interests include health professional education, reflective practice, narrative practice, therapeutic relationship, and qualitative methodologies. Her doctoral research was a hermeneutic phenomenological investigation into the qualities and practices of a ‘good’ physiotherapist. When searching for the good in physiotherapist practice, it was found that balancing biomedical knowledge and technical skills with a person-centred approach and ethic of care was important.

Pulak Parikh MPT, DPT, PhD, FCAMPT

Pulak Parikh MPT, DPT, PhD, FCAMPT is an Assistant Professor with the School of Physical Therapy at Western University (Ontario, Canada). He has been a practicing physical therapist for over 23 years and is credentialed as a Fellow of the Canadian Academy of Manipulative Physical Therapists. He is an early career researcher in the field of spinal pain focused to investigating neck and thoracic pain to improve patient management. He also has a special interest in upper extremity rehabilitation and outcomes post-surgical repair. Through his commitment to education and research, Dr. Parikh aims to advance the understanding and treatment of musculoskeletal disorders and enhance patient care and outcomes.

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Examining Anti-Blackness in Canadian Physiotherapy Education Using Critical Race Theory and Critical Race Feminism as Theoretical Perspectives https://jhrehabredesign.ecdsdev.org/2024/09/16/examining-anti-blackness-in-canadian-physiotherapy-education-using-critical-race-theory-and-critical-race-feminism-as-theoretical-perspectives/ Mon, 16 Sep 2024 19:52:56 +0000 https://jhrehabredesign.ecdsdev.org/?p=10742

Examining Anti-Blackness in Canadian Physiotherapy Education Using Critical Race Theory and Critical Race Feminism as Theoretical Perspectives

Oyindamola Otubusen, B.Pharm, MPT, PhD (c) & Stephanie Lurch, BScPT, MEd

Table of Contents

Abstract

This article offers a critical examination of the pervasive issue of anti-Black racism within the Canadian physiotherapy (PT) academy. Despite initiatives aimed at addressing inequities in health professions education, systemic barriers to equity, diversity, and inclusion persist for the Black PT learner and practitioner. The profession is characterized by whiteness. Employing a critical race methodology, the historical roots and contemporary manifestations of anti-Black racism on campus are analyzed through a critical race theory and critical race feminist lens in response to the call by Canadian PT scholars to advance critical anti-racism research in this field. Our findings reveal a pattern of discrimination and exclusionary practices within the profession. Specifically, it uncovers a hostile racial climate influenced by ‘racial realism,’ a concept with origins linked to slavery, white supremacy, and negro-ness.

Moreover, we discuss the potential ramifications of systemic racism that negatively impacts Black students, in particular those who identify as women. These include reactive invisibility, intersectional disempowerment, representational intersectionality, and hypervisibility of Black women. Paradoxically, the ramifications of this article will be to make the presence of anti-Blackness within the PT educational environment hyper-visible. It provides an opportunity for the academy to critically analyze anti-Blackness in the PT environment as an initial step to guide future anti-racist actions and research endeavors.

Introduction

“Don’t think there are no crocodiles, just because the water’s calm” (African Proverb).

This article opens with an African proverb that underscores the significance of the environment in determining an individual’s ability to merely survive or thrive. We, the Black[1], cis-gendered, female physiotherapists (PTs) and authors of this work, aim to confront anti-Blackness, whiteness, and white[2] supremacy within the field of PT that may serve to perpetuate inequities in racialized populations, directly opposing thriving. Within this discourse, our investigation contributes to a more inclusive and equitable understanding of the human experience by amplifying the voices of Black individuals within the PT academy.

Experiencing Anti-Blackness

Anti-Blackness refers to a type of racism that is deeply ingrained in the laws and policies of Canadian institutions including education, healthcare, prisons, and the workforce.2-6 It specifically targets Black individuals and is rooted in white supremacy, colonization, and the slave trade.4,7 As Black women and former PT students at Canadian universities, we have encountered anti-Blackness and its detrimental consequences in this academic setting. These experiences are the motivation to pursue research that focuses on critical epistemologies aimed at documenting, analyzing, and transforming anti-Blackness in PT practice. In this article, anti-Blackness refers to all forms of racial aggression experienced by Black individuals.

This project is grounded in four premises:

  1. Race is a social construct manufactured by white colonizers and legitimized by policies to define hierarchy and accumulate capital. It is devoid of biological reality. 8-10
  2. Institutional factors, coupled with the process of racialization, allow those at the top of the hierarchy to enjoy better economic, political, and social benefits.11
  3. People’s experiences are significantly influenced by their interactions with institutions that are informed by their race and other intersecting identities.12
  4. The Canadian PT academy is predominantly characterized by anti-Blackness, with Black students often facing exclusion, discrimination, and low academic grades.1 Black physiotherapists are also devalued in the workplace.13

CRT Applied to PT Education in Canada

The primary objective of our research is to investigate and expand anti-Blackness research within the rehabilitation sciences, with a focus on the field of PT education in Canada. Employing critical race theory (CRT) as a theoretical perspective and framework, we seek to illuminate the documented evidence of anti-Blackness within the Canadian PT academy. Research focusing solely on Black participants in the Canadian PT academy remains limited, with only Wegrzyn et al1 having published on this topic. However, their study did not extensively analyze the data using CRT, as indicated in their study’s limitations. Hence, our project aims to conduct an in-depth analysis of their published data, incorporating CRT perspectives.

CRF Perspectives

Moreover, we intend to employ critical race feminism (CRF) perspectives to explore the phenomenon of gendered racism14 among Black women students within the PT educational setting. Through this approach, we aim to present CRT and CRF as rigorous theoretical concepts and frameworks suitable for the analysis of anti-Blackness in Canadian PT schools, thus addressing the call by Canadian PT scholars to advance CRT and anti-racism research in this field.1,13,15 Additionally, our research aims to expand the limited scholarly knowledge in the Canadian academy regarding the intersecting identities of PT students. Furthermore, the over-representation of white PTs in the field, combined with evidence of systemic racism, may unwittingly perpetuate health inequities by limiting the potential benefits of PT treatments in racialized populations.13,38,40-42 Consequently, this study may hold significant implications for population health.

To examine and dismantle contemporary racism, it is imperative to account for historical patterns, as they provide insights into the roots of this oppression and are essential for devising effective strategies for its eradication.16-19 Therefore, in the following section, we explore the history of anti-Blackness in Canada and contextualize it within the Canadian PT Academy. An all-encompassing history is beyond the scope of this discourse.

Background and Context

History of Anti-Blackness in Canada

For 200 years, beginning in the 1600s, Canadian colonizers, like their American counterparts, violently removed Black individuals from their native lands and forced them into chattel slavery on stolen land.20-21 These actions were legally sanctioned by the government during this period.22-23 The resulting construct of “Negro-ness,” ie, “the construction of non-humanness by the West,”24(p245) effectively legitimized chattel slavery and rationalized the idea that Black lives held value only as white property.22, 25-26 Additionally, this logic of Negro-ness serves as a stronghold of white supremacy resulting in detrimental consequences that continue to impact Black lives to this day.6-7

Despite popular beliefs that anti-Blackness is not as pervasive as in the United States, it is deeply embedded in everyday life in Canada.12,27 One of the reasons for its persistence is a false notion that all Black Canadians are new immigrants and their issues are related to being out of place.26,28 We know that Black Canadians have been present in Canada since the 1600s.23 Moreover, in 2016, approximately 44% of Black Canadians were born in Canada.29

Anti-Blackness and Canadian PT

PT is recognized as an allied health profession within the realm of rehabilitation sciences, with eligibility requirements varying among the 15 Canadian universities offering postgraduate programs in this field.30 The origins of this profession can be traced back to China in 3000 BC, although the profession as we know it was later developed in Sweden.31 In Canada, PT gained traction following World War I, when returning soldiers required rehabilitation services.32 However, the country was plagued by institutionalized racism during this period, with Black soldiers serving in segregated military units.33 It is plausible the anti-Blackness that existed at the inception of the profession has contributed to the whiteness of the profession, although there is a lack of anti-racism research to prove this definitively.

Recent research has shown that anti-Blackness is prevalent in healthcare and health professions education in Canada, including nursing, medicine, and occupational therapy.1,4,13,15,34-36 However, there is limited research on this issue in Canadian PT academia, as most studies have focused on the United States (US) and the United Kingdom (UK). 13,15,37-38

The available Canadian studies have consistently found that PT education and the profession are characterized by whiteness, which is distressing to Black individuals and reinforced by institutional factors.1,13,15 Anti-Blackness in Canadian PT education restricts the entry and upward mobility of Black individuals,1 which may result in an under-representation of Black physiotherapists in the Canadian workforce. A significant under-representation of Black people in the field of PT has also been observed in the UK and US.38-39

Theoretical Frameworks

Critical Race Theory

Critical race theory (CRT) emerged from critical legal scholarship (CLS) as a response to the racist judiciary decisions in the American legal system that negatively impacted racialized groups.8,43 Developed to examine racial matters, it actively works toward social justice and the elimination of racial oppression.44,19 The first use of a CRT framework in education (K-12) was by Gloria Ladson-Billings and William Tate in 1995. It was introduced in higher education by Solorzano45 in 1998 to examine the role of racial and gender aggression in Mexican-American scholars. Although the CRT framework is still developing within Canadian PT studies,1,13,15 its utilization in our research is essential because it aligns with our objectives, especially given the historical context of anti-Blackness within Canada and the PT academy. The subsequent section elucidates the core principles of CRT that substantiate its relevance to our study.

The Fundamental Principles of Critical Race Theory

Centralization of Race, Racism, and Intersectionality. In the field of education, CRT operates based on the assumption that racism is present and pervasive in educational institutions, and aims to eliminate it.19 It prioritizes racism, taking into account varying intersecting identities, thereby rejecting essentialism.8,19,43 In anti-Blackness works in Canada, a CRT approach is particularly significant, as racism is often analyzed within the context of multiculturalism, which has been criticized for perpetuating oppressive and colonial practices, erasing the unique needs of different cultures, and releasing institutions from their specific anti-racist obligations.3,12,46 Specifically, it is crucial to emphasize that the Canadian PT academy has significant challenges related to anti-Blackness.1,13,15

Transformation and Social Justice. CRT portrays educational institutions as having a dual nature, serving both as a means of perpetuating racial oppression and as a tool for promoting social justice through transformation.19 It analyzes how dominant ideologies are embedded in educational policies, practice, research, and theory to further the racial oppression, exclusion, and marginalization of racialized people.45 The Canadian PT academy exhibits evidence of Eurocentric ideologies and epistemologies, resulting in adverse effects on racialized PT students.71,72 Despite the nascent state of critical and anti-racism research in Canadian PT,1 we posit that the academy possesses the potential to engage in such research, employing methodologies that prevent the distortion of narratives related to oppression.

Liberalism Critique. CRT challenges claims of neutrality and color blindness inherent in educational liberalism given that it exacerbates harm to racialized students by promoting meritocracy as an answer to education inequity.8,10,19,43 The culture of whiteness in Canadian PT renders anti-Black racism invisible to the majority, potentially bearing consequences for promoting neutrality in the academy.1

Amplification of the Experience of the Oppressed. This is of utmost relevance to this project as it centralizes and legitimizes the experiences and perspectives of Black people providing a distinct conceptualization and examination of anti-Blackness that challenges prevailing ideologies of racism.8,19,43,47

Historical Context and Inter-disciplinary Context. CRT acknowledges the historical context of racialization and the institutionalization of these belief systems, which continue to cause harm to racialized communities.10 It incorporates critical epistemologies from Critical Legal Studies (CLS) and other disciplines, such as Ethnic Studies, Women’s Studies, Sociology, and History, to enhance perspectives that deeply explore the historical and institutional contexts of racism and racialization.17,19 In this study, we have elucidated the historical context of anti-Blackness in Canada and its implications for the contemporary state of the PT profession. Moreover, the data in this study is analyzed using epistemologies from various disciplines, including Law16,63 and other disciplines.19,58,62

Critical Race Feminism

Critical Race Feminism (CRF) stemmed from CRT and CLS in the late 20th century and is intended to analyze the intersection of race and gender within a feminist perspective.9,27 Although the roots of this ideology can be traced back centuries to the practices of women, such as Harriet Tubman and Sojourner Truth,49 its emergence was prompted by the marginalization of female critical-race scholars who were racialized by both men within their communities and white feminists. In addition to the foundational principles of CRT, CRF is fundamentally anti-essentialist.9

Anti-essentialism is a concept that challenges the notion of a shared identity among groups such as women or Black people. As articulated by Wing,9 the idea of “multiplicative identity”9(p7) posits that Black women are not simply white women with added racial identity or Black men with added gender identity. This concept, popularized by Kimberlé Crenshaw, a leading figure in the CRF movement, forms the foundation of the intersectionality theory. This notion of intersecting identities has been embraced by the Canadian third wave of feminists, who have questioned the role of earlier generations of white feminists in the marginalization of racialized women.27

Black women experience a distinct and intersectional form of oppression, referred to as misogynoir.50 CRF methodology draws on critical race theory and feminist theories, such as Black feminist thought, to analyze misogynoir.51,52 Like Black feminism, CRF recognizes that Black women occupy a complex intersectionality matrix, defined as a “specific location where multiple systems of oppression simultaneously intersect and subjugate to conceal deliberate, marginalizing ideological maneuvers that define otherness.”51(p454) As an intersectionality matrix, the Canadian faculties of PT may impose boundaries on how Black women experience their education and how they are perceived by that institution. The CRF framework is appropriate and valuable for this research, as it presents, illuminates, analyzes, and challenges hegemonic ideologies that oppress Black women in higher educational institutions.14,49,52

Methodology and Methods

In this project, we utilize Critical Race Methodology (CRM),19 which aligns well with our research aims and objectives. Grounded in CRT, CRM examines the interconnected nature of racialized oppression, considering factors like race, gender, and accent, among others. This methodology is deemed apt for investigating the experiences of racialized individuals within higher education settings.19 Notably, CRM diverges from prevailing methodologies and epistemologies by recognizing the credibility of various data sources, including lived experiences, existing literature, and the authors’ personal and professional insights.

Data Collection and Search Strategy

A rapid literature search was conducted to identify how anti-Blackness is reported and perpetuated in PT education in Canada. This is an efficient and trusted method of synthesizing evidence for research.53

In February 2023, the search was conducted across several databases, including PUBMED, PEDRO, SCOPUS, PsychInfo, and ERIC, as well as gray literature. The search was conducted using the following terms: “Anti-Blackness,” “Physiotherapy,” AND “Canada,”. The search also included synonyms common to these terms and applied wildcard and Boolean operators where applicable. In total, the search yielded 3,041 articles.

Study Selection

Upon completion of the search and removal of duplicates, the titles and abstracts of the retrieved articles were screened. Four full texts were reviewed in cases where the abstracts lacked sufficient information. One reviewer completed the search and data extraction, an acceptable approach for conducting a rapid literature search.53 Our inclusion criteria mandated the utilization of narratives exclusively from Black students/ Black physiotherapists as data, alongside the provision of sufficient demographic information attached to the published excerpts of these narratives. Additionally, the selected studies were required to focus on anti-racism in the PT academy. Ideal studies identified Black female PT students. Studies that did not specify the race of its participants were excluded. None of the screened articles met the initial eligibility criteria. However, Wegrzyn et al’s1 anti-Blackness study was selected because it was the only one available that focused on exclusively utilizing Black students in the Canadian PT academy, although the gender information of participants was not provided.

Originally, we intended to rely on published data exclusively from studies that focused on Black participants in Canada. However, due to the limited literature available in this specific area, we opted to broaden our approach. We turned to research in UK PT education for its pertinent insights into anti-Blackness, which demonstrated parallels with the Canadian context.13,15,37,38 This decision was also influenced by the closely linked historical roots of PT practice in both Canada and the UK.74 Consequently, while not formally part of the rapid review, Hammond et al’s37 scholarly work from the UK was also incorporated into our study, an approach acceptable within CRM.19 This study37 offers relevant insights into anti-Blackness and shares parallels with the Canadian context. Additionally, it met our inclusion criteria as it identifies both the race and gender of participants with excerpts of their narratives. Their study37 also included Black female PT students in its participant pool.

In the study by Wegryzn and colleagues,1 narratives were collected from seven Black physiotherapists, a Black PT student, and two university staff. They analyzed these narratives using the definitions of institutionalized and personally-mediated racism explained in a theoretical framework by the public health physician Camara Jones.54 Additionally, the study utilized the work of cultural theorist Sara Ahmed’s 2006 work to explore how PT schools are oriented toward whiteness.76

Hammond et al37 collected narratives from 17 PT students, including Black, Asian, and other non-specified racialized groups, using focus group interviews. Although they did not strictly employ CRT, they utilized a thematic analysis framework alongside a CRT lens to analyze their data. Their findings were similar to those of Wegryzn et al,1 indicating that racism is pervasive in the PT academy. The themes identified in their study included racialized people feeling like outsiders, a lack of response from the faculty, and persistence as a strategy by racialized people to persevere despite a lack of power. In total, we collated nine data entries, seven from Wegrzyn et al1 and two from Hammond et al.3

Data Analysis

We conducted an analysis of previously published narratives from only Black PT students and Black physiotherapists from the Canadian study (Wegryzn et al1), and Black female PT students from the UK study (Hammond et al37). A continuous examination and re-examination of the data was conducted until discernible patterns emerged,75 an approach done by others in higher education that utilize a critical race methodology to analyze racism.19,45 Specifically, a four-step process was used to analyze data.

First, a dataset was created by collecting the nine entries of data from the narratives of participants and the preceding statements for context as provided by the authors in the selected articles. Aligned with the research objectives, the Canadian study1 exclusively included narratives relevant to physiotherapy education, while the UK study37 encompassed narratives specifying the participants’ race as Black.

Next, specific forms of anti-Blackness in each data entry were identified and conceptualized drawing on the principles of CRT and CRF, while using related philosophies extracted from applicable scholarly works.

Subsequently, similar concepts were grouped into related categories.57-58

Lastly, the first author’s experiences (OO) of anti-Blackness in this context were incorporated as they relate to specific concepts and ideas during the analytical process, a practice common in CRM.19,47,59

Results

Racial Realism

In his seminal work on critical race theory, Bell16—a CRT founding scholar—introduced the concept of racial realism, which posits that Black people retain a permanent subordinate status in Western society and institutions. He traces the origins of this concept to the legacy of slavery, white supremacy, and negro-ness. Within the Canadian PT school context, racial realism may be reflected in the perception of Black people as inferior. The history of Black slavery in Canada and its implications in Canadian universities,3,20-21,60 as well as the origins of Canadian PT, along with evidence from this study and others,13,15 lend credibility to this concept. We posit that the conspicuous absence of Black representation in Canadian PT schools may serve as a testament to racial realism. This perception of inferiority may prevent Black individuals from pursuing PT as a career option. For example, the following is a quote from a Black PT student speaking about whiteness in Canadian PT schools:

I just think that PT [physiotherapy] is not something that Black people have been…it’s not something that has penetrated aspects of different Black cultures…I mean…a stereotypical image of a physical therapist… I think it’s very Caucasian. At least that’s the image that I’ve kind of—that comes into my mind.1(p5)

In support of this contention, a Black physiotherapist spoke of a Black applicant who noted the lack of pluralism19 and rejected his offer to enter a PT program:

 “…[He] interviewed, got in, talked to a student, uh, another… Black student who was there, and… that [ie, the whiteness of PT as a profession] heavily influenced his decision in fact to… turn down the spot when it was offered for him”1(p7)

In his work with racial realism, Bell16 proposed that the attainment of status, privilege, or entry into a predominantly white space by Black individuals does not exempt them from experiencing racial discrimination. Based on this analogy, we contend that Canadian PT academic institutions may discriminate against Black students, even when they gain admission. The personal experience of (OO) as a recent former student is instructive in this regard. During her first year in the PT program, she sought guidance from an instructor to address course-related concerns. However, the instructor dismissed her inquiries and proceeded to question her current academic competence and the adequacy of her educational background for PT, despite her exceptional performance in all mandatory prerequisite courses at a Canadian university. Even though she got in, she was viewed as inferior. Furthermore, the findings of a participant from Wegrzyn and colleagues1 corroborate this sentiment, as she recounts an experience with a white colleague with whom she had only communicated via phone previously:

[She said] “You know, I had no idea you were Black.” I’m like, “Well, you probably wouldn’t, though, because you hadn’t met me…” And she said, “No, no, no, but you speak so clearly and you…”1(p7)  

The authors of the original article analyzed these narratives as PT being a “white space”1(p6) constructed around whiteness, which systematically excludes Black individuals. In our analysis, we contend that this whiteness is a pervasive feature that extends beyond the absence of Black bodies in the academy. It is an indication of racial realism that is entrenched in the Canadian faculties of PT.

Racial Aggression and Hostile Racial Climates

In their CRT study examining anti-Blackness and racial climates on college campuses in the United States, Solorzano et al77 documented an unsupportive racial campus climate. Building upon this, Yosso and colleagues58 conducted a study involving Latina/Latino students, further expanding the concept by introducing the term “hostile racial climate.”58(p664) This term encompasses the existence of racist incidents and aggression within university settings, which detrimentally impacts racialized students, resulting in adverse learning and social outcomes. From the findings of this project, we propose that a hostile racial climate in the PT academy is a product of racist injuries rooted in a foundational racial realism that significantly impedes Black PT students’ ability to flourish. To illustrate this phenomenon, we present the narratives of these participants. A Black physiotherapist articulated an occurrence during the PT program:

“Everything I wrote [as part of my physiotherapy training program] for, like, the next 2 years, I never got higher than a 76%… Until the last assignment… it’s anonymous, so you’re not allowed to use your own name at any point through this document…So… I get 98.5%”1(p7)

Hughes et al15 delineated the potential for the Canadian PT Academy to remain unaware of their antagonistic racial milieu. The presence of a hostile racial climate is often obscured by those who do not experience its effects, as educational institutions are commonly depicted as benign spaces devoid of racism.61 This Black student noted:

“[T]here’s a culture in place that is in a sense almost invisible to the people who are comfortable within and the people who are the majority within that culture.”1(p6)          

As survivors of hostile racial climates, the authors have experienced multiple instances of racial aggression. In particular, OO was carded by university security officers during her academic program. Her race and distinctive physical appearance as a Black woman with long and thick dreadlocks, made her stand out. On one occasion, she was stopped and asked for identification (ID) in the presence of her friend and classmate, a white woman. After presenting her ID, the officer proceeded to offer her friend an escort to her vehicle, citing the supposed danger she faced as a white woman walking alone at night. This incident highlights how (OO) was treated with hostility and viewed as not worthy of protection by the security officers. In this case, her Blackness predisposed her to a hostile racial climate.

Wegryzn et al1 presented their participant narratives as further evidence of the dominance of whiteness within the field of PT. We extend their inference by presenting Black PT students as survivors of a hostile racial climate, which is an outcome of the pervasive whiteness present in PT and is underscored by racial realism.

Moving forward, we will employ CRF to analyze OO’s experiences plus the narratives of Black female PT students, as documented in the article by Hammond et al.37.

Reactive Invisibility and Representational Intersectionality

Hotchkins and Dancy62(p35) define “reactive invisibility” as a racial avoidance approach employed by Black students to navigate hostile racial climates, involving intentional removal of oneself from physical locations where racial aggressions may occur or employing other strategies to evade confrontations during racial interactions. This defensive strategy manifests as deliberately attempting to be invisible when faced with racial assaults.

The concept of “representational intersectionality” was introduced by Crenshaw63 as a means of elucidating the cultural portrayal of racialized women by the dominant society. One such portrayal is the “Sapphire” stereotype, which depicts Black women as being “stubborn, bitchy, bossy, and hateful”43(p89) and has its roots in the historical era of slavery. The portrayal of Black women as the sapphire43 predisposes Black female college students to employ reactive invisibility strategies when confronted with racial aggressions in hostile racial climates.

For example, imposed silence as a form of reactive invisibility is supported by remarks made by a Black female PT student who discussed her approach to handling racist comments:

I just take it as it’s just the way it is; so it’s kind of like you acknowledge it but you just move on, you don’t really give it too much energy,…Yeah, at the time just what else can you do? I mean especially on placement you’re just trying to get through placement, to be honest, you’re not really trying to change the world there.”37(p7)

Like this student, (OO) tries not to stir the pot and fly under the radar when confronted with racial injustice. She ignored repeated blatantly-racist comments from her perpetrator (a clinical instructor) and avoided the instructor as much as possible. When she could not, she stayed silent and did not participate in conversations with the clinical instructor or other members of the team. She muted herself and “picked her battles, by being strong.”64(p633)

Hammond et al37 interpreted similar strategies simply as a coping mechanism employed in racially-charged situations but did not explicitly consider the concept of misogynoir.50 By employing a CRF lens, we established a connection between gendered racism14 and responses to racial atrocities.

Being the only Black individual in (OO)’s master’s class, her physical appearance, which included being a woman with long black dreads and a Nigerian accent, made her hyper-visible. Despite her attempts to go unnoticed, she struggled to evade attention and the ensuing misogynoir.50 In fact, the more hyper-visible she felt, the more she tried to make herself invisible. For instance, a professor in her department who perceived her hair to be an anomaly once asked, “Are you just having a bad hair day or what is this?” in reference to her dreads. Rather than verbally respond to this racial abuse, she reacted by making herself invisible and refrained from wearing dreads for the remainder of her time in the master’s program; instead, she straightened her hair to conform to Eurocentric beauty standards, akin to a white woman’s hairstyle. Furthermore, she tried and failed woefully to speak with a Canadian accent. After all, an accent hierarchy exists in PT settings, with African accents often marginalized and placed at the bottom of this hierarchy.13

Structural Intersectionality and Intersectional Disempowerment

Crenshaw63 coined the term “structural intersectionality” to describe the unique experiences of Black women, which are shaped by their physical location, cultural position, marginalization, and oppression. This concept highlights the need for knowledge and guidance to be specifically tailored to meet the needs of Black women. The intersectional identities and experiences of Black women underscore the importance of seeking guidance from those who can offer relevant and relatable perspectives;66 however, there appear to be limited opportunities to do so. This Black PT student, who is a woman, noted:

So I didn’t really see it [physiotherapy] as a race issue and even discussing it with family, friends, people that I’d come across, I think the only time that I sort of picked up that there weren’t a lot of … black women that were doing it when I was researching was when I was looking for mentors and people to actually talk to.37(p6)

Hammond et al37 surmised this statement as an attempt at belonging and a lack of Black representation in PT schools. We took this further by showing that the cultural position of Black PT students who identify as women in the intersectional matrix is disempowering, such that thriving in the PT academy may require initiatives tailored specifically to this category of individuals. We postulate that this intersectional disempowerment of these Black women is a product of a hostile racial climate.

Discussion and Implications

This project presents CRT and CRF as rigorous theoretical frameworks to examine anti-Blackness in Canadian PT education. Our results present the problem of racial realism,16 hostile racial climate,58 and intersectional disempowerment63 in PT education.

Canadian PT researchers1,13,15 investigating racism in academic settings have heavily relied on Jones’s54 framework for their analysis. These studies mark a significant initial stride in documenting racism within Canadian PT contexts. To adequately assess and address racism in higher education institutions, CRT and CRF frameworks necessitate a thorough exploration of whiteness and racial aggression.9,58 Similarly, Ladson-Billings67 emphasized the importance of providing contextual background for comprehensive analysis of narratives. Building upon these perspectives, we employed a CRT and CRF theoretical framework to comprehensively examine anti-Blackness in the PT academy.

Contextualizing Anti-Blackness

This project presents a valuable opportunity for Black PT students and the academy to contextualize the presence of anti-Blackness within the educational environment, specifically addressing it in relation to Black women’s experiences. It delivers a critical and thorough analysis, with the potential to guide future anti-racist initiatives and research endeavors.

By using these theories, this research demonstrates that the intersectionality of race and gender impacts the coping mechanisms of Black women PT students and physiotherapists in hostile racial climates. The findings indicate that these individuals may avoid responding to racial insults spurred on by racist stereotypes.

Furthermore, these findings corroborate those by Corbin et al64 wherein they observed that the phenomenon of representational intersectionality, particularly the portrayal of Black women as the sapphire,43 predisposes Black female college students to employ reactive invisibility strategies when confronted with racial aggressions in hostile racial climates. Newton14 also presented similar findings in her work, which used a CRF framework to explore the experiences of gendered racism among Black female college students in a hostile campus climate. Additionally, Franklin65 acknowledged that although Black female college students confront racial aggression to some extent, they are comparatively less likely to do so than their male counterparts.

Furthermore, we identified a paradox of hypervisibility and invisibility among Black female PT students. These experiences echo Newton’s14 work, which found that Black female college students undergo the paradox of being invisible and hyper-visible in a university setting, thereby making them targets of racial hostilities.

Further Research Required. Avoiding addressing anti-Blackness in educational settings can lead to social isolation, low academic achievement, increased racial battle fatigue, and missed opportunities for professional advancement.18,77,62,68 Therefore, further research is needed to document and analyze racial aggressions and racial battle fatigue experienced by Black women in Canadian PT schools using critical theories. Knowing that Black women in this setting require information specificity for the eradication of racial oppression,63 findings from such research may enable the PT academy to provide specific strategies to combat racism in this population. For instance, mentorship provided by Black women to Black women is an often-missed anti-racist strategy.63

By transforming the narrative surrounding white supremacy within Canadian PT schools, this study has shed light on the possible influence of racial realism16 in fostering a hostile environment within the academy. Racial realism dismisses the attainability of racial equality, urging Black individuals to embrace their circumstances, resist despair, and advocate for pragmatic approaches to combat oppression.16 While acknowledging the enduring presence of this concept, there remains a hopeful outlook for achieving racial equity in Canada’s PT schools.

More Rigorous Analysis Needed. A crucial initial step toward this objective is a rigorous analysis of anti-Blackness. Therefore, expansion of research on this subject is strongly urged. For instance, it is imperative to conduct studies that examine and categorize racial aggressions contributing to the hostile racial climate58 of anti-Blackness in Canadian PT schools, exploring their impact on the lives of Black individuals, while highlighting tales of resilience. By gaining deeper insights into these matters and understanding the contextual backdrop, it becomes possible to identify specific institutional factors that perpetuate racial realism and discern strategies for its eradication.

The issue of anti-Blackness in PT schools is multifactorial and this study does not aim to provide a solution. We argue that a band-aid approach will not be effective in combating anti-Blackness in this context, given the pervasive nature of racial realism.16 The laws and policies in Western institutions reinforce white supremacy and institutional racism;16,69 thus, we recommend that faculty leaders should “look to the bottom”8(p22) when enacting policies by rejecting those that do not improve the circumstances of Black students and other marginalized groups.

Furthermore, incorporating insights from Maloney et al’s73 examination of the effect of structural racism in the PT profession, we urge faculty leaders to demonstrate the necessary courage in posing challenging inquiries within their respective domains regarding the eradication of anti-Blackness. These questions may pertain to potential adjustments in curriculum, organizational policies, or modifications to admissions practices and faculty employment.73

Methodological Considerations

This research analyzed previously-published data and relied on the authors’ interpretation of the statements that preceded the narratives. Consequently, the study may not have accurately captured the complete details of the participants’ experiences. Additionally, the researchers analyzed a small number of participants, and we utilized excerpts from the published narratives, thus further limiting our dataset. Moreover, this project shares limitations common to those employing secondary data sources, including the inability to perform member checking or conduct additional interviews to confirm the findings.70

During our study selection process, we broadened our search strategy after finalizing the screening process, focusing specifically on the UK due to its relevance to anti-Blackness, which shares parallels with the Canadian context. We chose Hammond’s37 work as it met our inclusion criteria. While this departure from our initial study design may be perceived as lacking systematic rigour, it was necessary due to the limited availability of relevant research within the Canadian academy. Furthermore, Hammond’s study offers valuable insights into the issue of anti-Blackness, with similarities to the Canadian context.

Although CRT has gained significant attention in research, it has not been immune to criticism. One such critique was put forth by Andrews,24 who argued that scholars utilize CRT to diagnose the problem of racism and create excellent sub-theories with limited pragmatic application. However, given the current racial reality in Canadian PT schools and the limited availability of evidence, it is essential to conduct CRT scholarly work as a critical first step toward activism and transformation.

Conclusion

This study employed a CRT and CRF lens to examine anti-Blackness in Canadian PT academia by drawing connections between the historical patterns of racism and anti-Blackness in Canada, the PT profession, and the lived experiences of Black PT students and Black physiotherapists, including the personal experiences of a recent former PT student who is the lead author (OO). By demonstrating the effectiveness of CRT and CRF as rigorous analytical theories, this project explicates the documented evidence of anti-Blackness in the Canadian PT academy and explores the intersecting identities of Black women within the field. Furthermore, it underscores the urgent need for further research in this area and encourages other scholars in rehabilitation sciences to consider using these theoretical concepts in their work.

Footnote

[1] Black is capitalized to recognize racial, ethnic and cultural communities.

[2] The “w” in white is in lower case to correct the conditions of disadvantage that suggest white is superior.

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About the Author(s)

Katherine A. Franklin, PT, DPT, PhD(c)

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Carolyn Da Silva, PT, DSc, NCS

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Wayne Brewer, PT, PhD, MPH, OCS, CSCS

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Rupal M. Patel, PT, PhD

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A Seat at the Table: A Reflection on Engaging Disabled People and Their Families in Research and Service Design https://jhrehabredesign.ecdsdev.org/2023/11/21/a-seat-at-the-table-a-reflection-on-engaging-disabled-people-and-their-families-in-research-and-service-design/ Tue, 21 Nov 2023 21:44:48 +0000 https://jhrehabredesign.ecdsdev.org/?p=9941

A Seat at the Table: A Reflection on Engaging Disabled People and Their Families in Research and Service Design

Michelle Phoenix, SLP, Reg. CASLPO, PhD & Rae Martens & Sue Simpson & Maya Pajevic & Samantha Micsinszki, RN, PhD

Table of Contents

The metaphor “a seat at the table” has been used to describe the inclusion and engagement of Disabled People and their family members in system-level service design and research. While it is easy to agree with the sentiment that Disabled People and their families deserve a seat at the table when designing and evaluating the services and research that affects them, we are less sure about ‘the table’ as an accessible and inclusive rhetorical device. In examining ‘the table,’ we question: who ‘owns’ the table, who ‘gets to’ sit at the table, what is discussed at the table, and what happens when the table is ‘put away’?

An Exercise in Reimagining

In this reflection, we invite you to reimagine the table and to think about who ‘benefits’ from being there and what counts as beneficial. The authorship team includes a disabled young adult (MPa); parents of a disabled child (RM, SS); a trainee and leader in family-engaged research (SM); and a clinician-scientist (MPh) who prepared this reflection following a panel presentation (November, 2021) on the topic of family-engagement in research.

RM facilitated the panel presentation, asking thought-provoking questions about the successes, challenges, and pitfalls in doing family-engaged research, and prompting all panelists and audience members (families, trainees, child health researchers, decision makers) to deeply consider how to improve meaningful and authentic engagement. This stimulated enriching discussion and reflection about ‘the table’—with considerations of a critique of power, the place of kindness and warmth in relationships, diversity and accessibility, meaningful outcomes, and sustainability. Following are the reflexive questions we posed and the insights they inspired .

Who owns the table?

In this metaphor, the table is seemingly inanimate, powerless, and non-relational. In real engagement work, no one cares about the empty table, and ‘the table’ does not exist outside of the structure and people who animate it. Picture a table in a hospital boardroom or a family’s kitchen around which a discussion begins. In these respective contexts, you are likely to picture either organizational leaders or caregivers who have ownership and control over these tables. They have the power to determine who is invited in and what is discussed. Consider the activities and conversations that happen at a hospital versus a kitchen table.

We have experienced deeper, slower listening and relationship building over kitchen tables, but recognize that the decisions that affect services, systems, and policies are more likely to be made in hospital boardrooms. The context in which the table is situated imbues the table with norms and expectations about who is invited, how to conduct oneself, and what activities and discussions should occur. As such, the cold, sterile metal table of an operating room conjures notions of precision and intensity that are wholly different than the pictures conjured by a chaotic family table with coffee stains and scattered chairs. When we speak of ‘inviting people to the table’ it is incumbent on us to fully consider what table we are inviting people to and the implications, including power dynamics, therein.

If the power and value of Disabled People and their family members were truly recognized, could we meet at their tables? By their invitation, in their homes, over warm cups of tea, to listen and talk about the issues that are important to them. In homes, we might be more likely to book meetings according to nap or medication schedules, or school and work hours. Could the tables be turned so that these were the spaces in which services were designed, funded, and evaluated?

“As a parent to a disabled son and executive director of the Waterloo Region Family Network, I (SS) prefer to be at a table where people refer to me by my name, not Mom. Although I love being a Mom, using my name makes me feel welcome and gives a personal and less medical and scripted feel to the conversation. I appreciate when people sit beside me at the table, instead of across from me. This facilitates collaborative conversation rather than a ‘them’ and ‘me’ approach. In times of difficult discussions, sharing a box of tissues and shedding tears together are actions that show the professional truly cares. I feel authentically included and respected when people ask me what I would like to do and check with me to see if I feel my voice has been heard.”

Who gets to sit at the table?

We have explored who invites people to the table, but we must also consider who is invited. Often they are people who look like, or are equally positioned to, the person who did the inviting. They often speak the same language, have comparable communication modalities, literacy, and language abilities. Some people have titles, roles, and positions that entitle them to a seat. At some tables, the title of Mom, Friend, Elder, and/or Ally might grant you an invitation, and at others, the titles CEO, Clinician, Principal Investigator, and/or Associate Dean might be an all-access pass. While roles and titles help us to understand people’s identities, we must recognize the multiplicity of these for each person; parents are not solely parents, researchers are not solely researchers. We are all whole people and bring a wealth of diverse experiences and expertise to the tables at which we sit.

“As a researcher who lives with a chronic illness, I (SM) bring multiple identities and experiences to my work, and call us to acknowledge the unique perspectives each person can bring outside of the one title they are often invited in for (if they are comfortable to do so).” 

We wonder what happens if we bring kitchen chairs to a boardroom table. Invitations to the table are not enough. When asked to sit at the boardroom table, if there is little to no effort to truly make space for those invited, kitchen chairs would sit in stark contrast against the boardroom table. People are expected to fit into spaces and structures that were not designed for them. Consider the tokenistic effort of squishing a fold-up chair between the existing seats around a table, in a spot that easily disappears just as fast as it was created. Meaningful inclusion may mean planning for accessibility and investing in a bigger table, where community members can comfortably join the discussion.

For example, we could create spaces that fit wheelchairs, highchairs for children, and cushioned or high seating for people who experience frailty or pain. Virtual tables should be provided whenever possible to allow access from home, especially for those for whom mobility is a challenge or for those at risk of illness when environments do not require masks or have appropriate ventilation. We question whether ‘sitting at the table’ is even an apt metaphor for people who are not comfortable sitting due to pain or sensory needs. At the very least, we must recognize that where the table is situated, who is invited, and who does the inviting shape the conversations and ideas shared with an influence on actions, services, and policies.

“As a young adult who has a disability, I (MPa) often feel torn when healthcare leaders—whether clinicians or executives in the ivory tower—ask if I can sit in on a discussion. On the one hand, if I am the only patient present, then no lived experience will be heard if I say no. But on the other hand, if I’m the only [Disabled Person] at the table, I feel the participation is tokenistic. This feels like a checklist for the healthcare team where it doesn’t feel my voice is wanted, included, or valued at the table.”

What is discussed at the table?

Perhaps we are dreamers for imagining that, if we swapped the traditional tables in hospitals and universities for tables in homes and communities, the conversations would change, the agenda would be different, and perhaps there would be no formal agenda at all. We dream of a table that fosters more humanism, care, and nurturing relationships. Conversations might shift from feasibility and efficiency to experiences and hopes.

In the academic languages of patient-oriented research, family-centered care, and experience-based co-design there is credence given to the idea that people with lived experience have important insights that can guide service improvement and evaluation. Still, these processes are often done under the guise of a named partner on a grant, on academic timelines, and/or formalized in strategic plans and advisory committees. They can lack the time and flexibility to begin by asking about someone’s day, taking breaks or sharing food before rushing to the deliverable or the next meeting.

“As a researcher who contributed to this reflection, I (MPh) fear being written off as someone who is unserious about service design and research. I worry about being seen as non-academic, with presumptions that I don’t understand the importance of grants, and ethics, and rigor, and publication. I understand these academic demands and am writing to problematize and resist them in favor of alternatives that are judged by a yet unimagined set of metrics.

We dream of new ‘metrics’ and a truly patient-oriented academia where we know how our partners take their coffee, where we exchange birthday cards, where we ask about kids and dogs and share videos, when we make a personal call in the season when bereavement grief is hardest, and where we don’t need to fill silence with agenda items. With these metrics we can imagine that vulnerability is embraced, new ideas flourish, care is prioritized, and impact is felt through friendships and a smile instead of an impact factor.

“Two co-authors on this paper (RM and SM) recently had an opportunity to meet in-person for the first time after working together virtually (due to COVID and geographic location) for over 2 years. The meeting’s purpose stemmed from a shared on-site project presentation. However, it also provided an opportunity to connect over a physical table at some of SM’s favorite local places, to socially share food and drinks, and for us to literally and metaphorically fill our cups. This has led to other social activities and conversations based on shared interests, deeper discussions about family engagement, and renewed excitement for our future work together. The social nature of coming together at a table to eat inspires a feeling of community. The same can be said when we effectively come together to work on a common cause.”

What happens when the table is put away or broken?

Projects end, deliverables are submitted, funding closes, and people move on. We leave the table and often there are no obligations to extend further invitations. We wonder about whether anyone cares about these fractured relationships, because we do, and we continue to miss people and to wonder about their wellbeing after the project’s end. We question whether these relationships were purely transactional or if there is an element of friendship involved and a desire to stay in one another’s lives. Perhaps sustained involvement risks breaching ethical guidelines, but discontinuing relationships may also raise moral concerns.

We are not suggesting that there is an expectation that people must stay connected, but as researchers, consider whether it is fair to pack up the table when only your needs have been met. Perhaps community partners go back to their tables and leave the researcher’s seat empty. It would not make sense to close those tables, as people are still there in the community, living their lives and perhaps using the health and social services that were the focus of the project. We wonder if there is a sense of abandonment or relief that the commitment has ended?

We have witnessed the closing of virtual tables as people return to ‘the office’ regardless of the increased accessibility that these spaces afforded Disabled People and their families. In academic terms, we speak of sustainability, impact, and ethical responsibility, yet we have seen those concepts pertaining to the services themselves, not the relationships of the people who contributed to their development or evaluation.

But sometimes tables break before the project was planned to end. Perhaps the table was set upon wobbly ground on a foundation of mistrust and injustice. Perhaps the table’s legs were weakened, its bolts came loose, and the tabletop was scarred from broken promises, unresolved conflict, and antagonistic relationships. Perhaps the table was battered and bruised when moving from one environment to another. It takes attention and reflection to notice these harms, and kindness and empathy to care about them.

Beyond care, we propose there is a responsibility to hold ourselves, our colleagues, and our systems accountable for harm and to work toward the restoration of trust and relationships. When the broken table is left or discarded, the people who once sat around it may scatter. It could be replaced with a new table—but that may suffer the same fate if care isn’t taken to repair the conditions that led to a broken table to begin with. A new table might also bring new people and promises—and opportunities for growth and learning from past experiences.

Can we reimagine the table?

We aim to move past the uncritical adoption of the table metaphor to determine if it can be reimagined and whether this metaphor is needed at all. If Disabled People and their families were the ones to invite researchers, policy makers, and service providers to their tables, we would be excited to see whether the priorities and discussions also shifted, and if relationships felt more authentic and long-lasting. We propose there are times when tables are not needed at all. Those tables could instead be picnic blankets that encourage children and families to attend, with no formality or head of the table, and allow open entry and exit.

“When MPh and SM attended a 3-day symposium to advance Equity-Based Co-Creation, the small group discussion and prototyping tables were interspersed with tableless periods of learning and connection through kayaking, dance, beading, eating, and storytelling by the campfire—as seen in this video. This event was held at the Gathering Place by the Grand at Six Nations, along the banks of the Grand River in Ohsweken, Ontario and was planned, led, and experienced by local and international people with lived experience, community members, and researchers. This allowed for dynamic, creative, experience-driven conversations that enriched the empathy and understanding that informs service design, delivery, and evaluation.”

Conclusion

We have hope that those who are comfortable in boardrooms and ivory towers will take the time and effort to climb down and look for other tables, to forge relationships that garner invitations and mutual care and respect, and lead to transformative knowledge-sharing that cannot be undone at a project’s end.

About the Author(s)

Michelle Phoenix, SLP, Reg. CASLPO, PhD

Michelle Phoenix, SLP, Reg. CASLPO, PhD is an Assistant Professor in the School of Rehabilitation Science and CanChild Scientist at McMaster University. She is a speech-language pathologist with clinical experience working with young children and families. She has studied family-centred care, models of service delivery, parent mental health, cultural adaptation, and engagement in rehabilitation services. She believes that disabled youth and caregivers should have meaningful opportunities to inform service delivery and evaluation. Her research has included developing theories, teaching tools, and guidelines to improve meaningful and equitable engagement in research. She has found that embedding the arts in research methodologies and knowledge sharing has sparked creativity, passion, connection, and joy through the vulnerable sharing of emergent and messy ideas.

Rae Martens

Rae Martens is a Knowledge Broker with the Family Engagement in Research (FER) Program through Kids Brain Health Network and CanChild Centre for Childhood Disability Research. She is a bereaved parent of a disabled child and a disabled advocate herself. She has given talks all over the world regarding child health and disability. She is also a writer and science communicator. She believes that the humanities are important because they help us to better understand human culture and why we do what we do. In the world of engagement, that’s a vital practice.

Sue Simpson

As a founding parent, Sue Simpson has been part of the Waterloo Region Family Network (WRFN) story since the beginning. She has watched the network grow from a small group of volunteer families into a thriving organization that’s equipped to support thousands of people touched by exceptional needs. In her role as executive director, Sue oversees all operations and represents WRFN on many community collaboratives. Sue has been an active advocate for disability-related issues since the premature birth of her youngest son 34 years ago. Her personal and family journey with critical and emergency medical issues has shaped her inclusive approach to supporting other families facing similar experiences. She believes in building strong reciprocal relationships and a community of respect and belonging for all. A Wilfrid Laurier University graduate, Sue enjoys spending time with her family, including her husband, two adult sons, and her daughter-in-law. She is the proud recipient of the 2018 Empowered Kids Ontario (EKO) Tribute Award for Leadership.

Maya Pajevic

Maya Pajevic has been a patient partner for a decade, contributing to different aspects of the healthcare system. She believes that person-centred care starts in the heart, that engaging with different stakeholders, especially those with lived experience, does not only result in a more robust and resilient system, but also a safer one. Maya graduated from Mount Royal University in 2023 with a degree in Information Design and a minor in Social Innovation. Currently she is the communications lead for two CBI-Health-led programs, which look at meaningful employment opportunities for those that identify as having a disability in Alberta. When not working or advocating, Maya can be found on the hiking trail or ski hill, and she enjoys endless snuggles with her dog Dyna.

Samantha Micsinszki, RN, PhD

Samantha Micsinszki, RN, PhD is a registered nurse and currently a postdoctoral researcher at CanChild Centre for Childhood Disability Research at McMaster University, and Training Director of the Family Engagement in Research (FER) Training Program. Sam has a particular interest in patient and family engagement in research as well as knowledge translation and research impact. Her work focuses on participatory approaches to inclusive and meaningful patient and family engagement across the lifespan. In 2021, Sam was diagnosed with Crohn’s disease, an experience that has had a significant impact on her personally and professionally. She is keen to use her experiences and her new perspective to create awareness of and advocate for equitable patient and family centered research and care through creative methodologies. When not working, you’ll find Sam lacing up her skates, learning how to play hockey.

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How Structural Oppression Has Shaped the Physical Therapy Profession and Access to Rehabilitative Services https://jhrehabredesign.ecdsdev.org/2023/05/05/how-structural-oppression-has-shaped-the-physical-therapy-profession-and-access-to-rehabilitative-services/ Fri, 05 May 2023 20:09:15 +0000 https://jhrehabredesign.ecdsdev.org/?p=9511

How Structural Oppression Has Shaped the Physical Therapy Profession and Access to Rehabilitative Services

Brian J. Maloney PT, DPT & Maurice Z. Middleton, PT, DPT

Table of Contents

Physical therapy has been practiced in the United States for over 100 years. In this article, we analyze the development of the profession and the influences of a US society built on the oppression of Black, Brown, and Indigenous People. The forces of structural racism have led to the exclusion of these people from the US healthcare system. We explore history from the perspective of those who have been oppressed due to race to better understand structural racism within the US. The implications of historical events that led to racialized oppression regarding housing, education, and personal finances are explored to better understand how racialized persons have been excluded from healthcare. The physical therapy profession has excluded Black, Brown, and Indigenous People from educational opportunities as well as rehabilitative services. Progress to remove barriers within the physical therapy profession have been minimal. It is important to understand the historical influence of structural racism in the nation before we can address problems of structural racism that are evident in physical therapy. The US healthcare system is flawed and also needs to address many barriers to Black, Brown, and Indigenous People. This article seeks to serve as a first step in better understanding this history.

Introduction

The SARS-COVID-19 pandemic has amplified healthcare inequities within the United States healthcare system.1 The pandemic has also illuminated exclusionary tendencies of non-white persons in physical therapy (PT) within the US. To better understand how PT came to be exclusionary, we decided to analyze the history of the PT profession alongside the history of the US told by persons who were racially oppressed. Before any solutions are offered, we must first analyze the current and historical influences of racial exclusion in PT.1-6

Oppression and Exclusion of Racialized Persons

Persons in the US who have been oppressed based on their race, since European colonization, include Indigenous, Black, Latinx, and Asian Americans or Pacific Islanders and other immigrants. The presumption of race is built on theories of biological superiority and inferiority.2-3,6-7 In reality, these biased claims have been disproved scientifically.4,8,9 Throughout history, race has been defined by those in power and has been fluid in its definition to fit the needs of the time.10,11 Therefore, race is a socially-constructed phenomenon used for the elevation of some and the subjugation of others.12-16 For this article, we employ the definition of racism as: the assumption of superiority of one human group over another based on skin color, which has been disproven.8-9,11 In this article, we use the term racialized persons to denote people who have been affected by racism in the US, which are people who identify as Black, Brown, Indigenous, Latinx, Asian American, or Pacific Islander.

Structural Racism and Physical Therapy

Healthcare, including PT, has historically paralleled societal trends and has been subject to new laws and judicial rulings.17 Without explicitly acknowledging systemic structural racism and institutional systems of racial oppression, the institution of PT has complicity operated within a system of racial oppression.

We define structural racism as the totality of ways in which societies foster racial discrimination through mutually-reinforcing systems of housing, education, employment, earnings, benefits, credit, media, healthcare, and criminal justice; these patterns and practices, in turn, reinforce discriminatory beliefs, values, and distribution of resources.12 Structural racism is a less overt, albeit pervasive, form of racism, which creates a hierarchy that elevates whiteness. This centering of whiteness leads to the exclusion and marginalization of non-whites. Institutional racism, conversely, refers to racially-adverse discriminatory policies and practices carried out within an institution (eg, a company) as opposed to society.12 Our meaning of the institution of PT encompasses the entirety of PT. This includes but is not limited to: PT education, including universities and regulatory bodies; professional associations; licensure and other testing and regulatory bodies; PT research; and businesses where physical therapists practice.

This article addresses the ways in which society has been exclusionary to racialized persons and how PT was created and exists within an exclusionary society. In the body of this article, we revisit history predominantly through the lens of Black American racialized persons, to illuminate how society and PT have perpetuated exclusionary practices. The World Health Organization defines social determinants of health as the conditions in which people are born, grow, live, work, and age.18 Persons who are negatively impacted by social determinants of health due to racialization have poorer health.19,20 In the discussion, we present a current-day analysis of issues persisting in rehabilitation that maintain exclusionary practices.

Approach to Analysis

There were 3 reasons why we embarked on writing this article: 1) To learn and unlearn for ourselves many values, behaviors, and knowledge. This goes along with our personal goals of improving social justice within healthcare. 2) To strive to help make the world a better place for our family and friends, as well as our current and future colleagues. We want to help create a better society where the institution of PT is not exclusionary. 3) To fulfill a need for this type of historical narrative in the literature within PT. The amount of material covered in this article would be difficult for one person to cover in a reasonable amount of time; we wanted to collate and share this knowledge in a targeted article to reach a wide audience.

We began reading historical narratives that were focused on people marginalized in traditional US history textbooks. From here we dove deeper into articles, podcasts, and websites to further understand more nuanced topics that were not elaborated in the books. We note that our individual identities have steered our selection of reference sources and how we have written this article. We are two able-bodied, Christian, heterosexual male physical therapists from 2 different racial groups (Black and white)[1]*, which gives us a specific lens through which to view history and translate it into our writing.

When we started this journey, we intended for this article to be informative and accessible to all and steered away from politically-charged topics. During the revision of this article, we were encouraged to add a critical race theory (CRT) framework to our article to strengthen it. Initially, we were hesitant. However, when we analyzed CRT, we realized our content was already based in CRT. What CRT does is consider marginalized communities’ history rather than centering on the history of only white Americans; CRT also analyzes how laws and other historical decisions affect racialized persons.10,14,15,21 CRT is not the “extremist” viewpoint that the media would have you believe. We ultimately decided to use a CRT framework to contextualize our findings.

These are presented through 5 tenets of CRT:

  1. Racism is normalized within the US and not aberrational.
  2. Interest convergence, where white Americans temporarily help Black Americans due to mutual gain
  3. Race is a social construct.
  4. The use of storytelling and counter-storytelling is central to understand the perspective of racialized persons.[2]*
  5. White Americans have been the main beneficiaries of civil rights legislation.15,21

This article primarily views history from a Black American perspective. It is not the authors’ intention to victimize, blame, idealize, or idolize individuals, institutions, places, or events in history, but to rather present history from the perspective of oppressed persons. We do this so we can accept this history together and move forward in productive conversations.

Beginnings of the Profession

The Foundation of the Racially-Exclusionary Practices We See Today (1920-1941)

The birth of PT can be traced back to World War I, around 1917.22 When the war ended a year later, reconstruction aides (white women only) entered the civilian workforce and began working with people injured in industrial accidents, and with children affected by polio.22 The name “reconstruction aides” created confusion, so in 1921, the American Women’s Physical Therapeutic Association was formed, and “physiotherapists” were born.22,23 Shortly thereafter, an official journal and educational standards were created.22,23 In 1936, the National Foundation for Infantile Paralysis, later known as “The Foundation,” was established to further research in PT.22,23

During this time, racism was common across the US. Lynching was also common, and it devastated racialized communities.24,25 Black soldiers returning home from war were targeted because of their newly-elevated social status.24 If injured in the war or on the job, Black Americans were likely excluded from most healthcare systems as they were still segregated at that time. The hospitals serving Black Americans and other racialized persons were limited across the US.26 Medical education was also segregated. Healthcare remained segregated until 1965.26 Until this time, there were no non-white physical therapists. It was beyond taboo for a white PT to treat non-white persons. In 1910, “The Flexner Report” issued recommendations for the advancement of medical education that all but condemned Black medical schools at the time.26 By 1923, only 2 of the nation’s 7 Black medical schools remained.26 The polio epidemic affected Black Americans in greater numbers when it spread across the US as they were largely neglected in polio care.27 The debility from this disease was again compounded by exclusion from PT. Additionally, the legacy of unethical and inhumane experimentation on racialized persons continued. The most infamous example is the Tuskegee Syphilis Study starting in 1932. Black men with syphilis were promised treatment and never given any, to study the progression of the disease. Despite treatment being available in 1947 and other ethical concerns being voiced along the way, the study continued for a total of 40 years.17 Unfortunately, many other racially-biased experiments were commonplace in the US during this time, affecting Latinx Americans and Asian Americans as well.13,17

In this era, there are likely some examples of interest convergence, but due to segregation, these examples are not as relevant to this topic. Race, on the other hand, was used to exclude racialized persons via ‘redlining’.11,28 Redlining is the practice of coding metropolitan maps to help mortgage lenders determine where it is safe to insure mortgages. Redlining resulted in a broadening of the racial wealth gap between white Americans and racialized persons that exists to this day.28 This wealth gap continues to force racialized persons to decide on paying for food or paying for healthcare, and excludes many racialized persons from attending higher education. During this time-period, there were no opportunities for racialized persons to train as physical therapists. The 13th amendment was racialized to create a free labor force for farmers that lost slaves.11,24 It worked in this way: Black Americans were cited for misdemeanor crimes; following their conviction, they were returned as prisoners to the fields as free labor.11,24 Latinx Americans were taken from the fields they worked and deported; if they returned to those fields to seek desperately-needed work, they were picked up a second time, imprisoned, then brought back to the fields as convicts, to serve as free laborers.24

The great depression hit racialized communities harder as the majority of Black and Latinx American families worked in agriculture but could not benefit from government assistance.24 White farmers and investors were profiting while the working conditions were worse for racialized persons than in slavery.24 These farmers were also excluded from accessing the benefits from the Fair Labor Act and the Social Security Act. This legislation did not protect the 30% to 40% of Black and Latinx Americans working in agriculture.24,29 Not only were racialized persons excluded from healthcare due to segregation; many did not have the financial means to travel to a segregated hospital.

In 1938, as part of the “New Deal,” Fannie Mae (Federal National Mortgage Association) was created to increase homeownership by making low-cost loans widely available. Between 1938 and 1962, 98% of the $120 billion in new housing subsidies went to white Americans.30 During this time roughly 15% of the US population was non-white,31 which demonstrates the inequities of government assistance. Racialized persons were widely excluded in society as well as in healthcare during this era.

The Transformation of the PT Profession

The Transformation of Exclusionary Practices of Structural Racism (1941-1993)

The attack on Pearl Harbor brought the US into World War II. This propelled physical therapists into the war effort again. Emma Vogel created an emergency 6-month didactic program for reconstruction aides, followed by a 6-month supervised clinical experience.22,23 Two years later, in 1943, this program was expanded to include Black Americans.23 The American Physiotherapy Association established its House of Delegates (HOD) in 1944.22,23 In 1947, the Women’s Medical Specialist Corps was established, and the professional association was renamed the American Physical Therapy Association (APTA).23 The Korean War called on physical therapists again from 1950 to 1953, but only 300 served.23 In the time between World War II and the Korean War, US healthcare remained segregated. The Black Americans trained as reconstruction aides likely did not continue in this line of work as failing segregated hospitals would likely not have been able to pay these women. A large number of the initial women trained were not likely called back to the small number of PT jobs retained in the Korean War. This meant that PT likely still remained exclusionary to racialized persons.

By 1955, APTA updated the minimum standards of PT education, which remained in place for the next 20 years.22 In 1960, the baccalaureate degree was now the minimum standard in PT education.22 Case Western Reserve University launched the first 2-year graduate program in PT.22,23 Physical therapists served throughout the war in Vietnam.22,23 Medicare legislation was enacted in 1965, and what followed was a healthcare boom, which benefited PT.22 In 1969, the first class of PT assistants graduated.22,23 APTA employed its Political Action Committee to have an impact on legislation and ensure the profession continued to grow.23 In 1973, the first PhD in PT was offered at New York University.22,23 This era ended with a post-baccalaureate degree being the minimum standard for PT education.

Racialized persons who aspired to become physical therapists remained excluded until 1974. That is when the PT program at Howard University was established, the first at a Historically Black Colleges and Universities (HBCU) facility.23 For the 41 years prior to this groundbreaking event, and despite the desegregation of undergraduate universities, there had not been many opportunities for racialized persons to receive PT education. Still, this was only one PT program in the entire US; therefore, most racialized persons were still excluded from educational opportunities in the field of PT. This exclusion was reported by APTA in 1983, noting concern for the lack of non-white representation in the profession.23 Its Council on Minority Affairs worked to create and award the first minority scholarship in 1988, to compete with other medical fields supporting racialized students in their respected fields.23,32

Over the broad time frame of 1941 to 1993, we see overt racism transform to its contemporary mechanism—one of ‘color blindness,’ as time progresses through the civil rights era. Color blindness, the belief that discrimination does not occur based on skin color, allowed racism to become more surreptitious—where it remains today.11 Structural racism asked the question, “How could there be racism or structural racism if there were laws against discrimination?” However, structural racism continued despite enacted laws as unintentional and intentional consequences of the white-dominated culture and politics.16,33 If you know where to look, you can still see the structural inequalities that are commonplace today like mass incarceration, poverty, home ownership percentage and location, education, and healthcare access.

Race as a social construct. During this era, media outlets initially remained segregated and continued to portray Black Americans poorly.34 Little had improved in the media’s portrayal of racialized persons, and with desegregation over time, white media outlets still survived and thrived. In the late 1960’s the Republican party used coded language in their infamous “Southern strategy” to win white voters in the south. Reagan created false narratives such as the Chicago Black “welfare queen” that the media propagated across the country.11 Yes, fake news is probably just as old as politics. It was therefore no surprise when a 1990 survey found white Americans perceived Black Americans as lazy, less intelligent, less patriotic, and preferring welfare to work.24 Many of these stereotypes were not new, but further entrenched biases of racial inferiority. This false stereotype likely led to greater exclusion of racialized persons in admissions to PT schools, and still might today.

Interest Convergence. This era was full of “interest convergence” between racialized communities and white Americans. Namely, this was in politics, with Democrats working toward civil rights legislation to gain racialized voters. Another example was in housing. The Fair Housing Act outlawed housing discrimination in 1968. Instead of stopping exclusion, however, this legislation simply altered the method in which racialized persons were excluded. Racial steering, predatory lending, and other exclusionary methods became the norm—and continue to this day.30

The concept of racial hierarchy persisted beyond this decade due to the legacy of biased scientific racism that came out of the slave era and persisted during segregation. This socially-created hierarchy did not change with any laws being passed as social norms generally do not change from legal actions. During this era, racialized persons were still segregated and paid less than white Americans for the same work.24,35 Then in 1947, the federal government passed the Taft-Hartley Act, giving more power to employers than employees. Unions also moved to exclude racialized persons from the union and their jobs.24,30 This created a wage gap that has not been rectified today.24 As previously mentioned, this wealth gap further excludes racialized persons from access to quality healthcare and education in PT.

Segregated hospital systems slowly became integrated as racialized persons were admitted at previously white-only hospitals. However, the loss of segregated hospitals led to a decline in the number of Black physicians, due to the loss of facilities in which to practice and train.33 Then in the 1970s, the cost of healthcare skyrocketed, further reducing access for racialized persons.24 We again note that in the US, the better your finances are, the less you are excluded from education and healthcare.

Civil Rights Era Beneficiaries. The civil rights era ushered in many new laws and actions meant to improve the liberties of marginalized and racialized people. However, these laws did not always produce their intended outcome, allowing for white Americans to become the major benefactors. For instance, Affirmative Action did not improve employment rates or wages as intended for racialized persons, but rather helped white women achieve greater employment rates.24,33

In 1956, the Federal-Aid Highway Act drove freeways through the poor areas of cities, more directly affecting racialized communities.36 This led to the suburbanization of major US cities and “white flight.” Suburban neighborhoods developed covenants that excluded racialized persons from purchasing houses within those communities. This occurred despite the ruling that outlawed redlining and other race-based housing discrimination in Shelley v Kraemer (1948).30

Legislation and Its Repercussions. In 1949, the National Housing Act authorized urban redevelopment, which led developers to tear down parts of urban areas and rebuild. Ninety percent of the houses destroyed were not replaced, and two-thirds of those displaced were Black and Latinx Americans.30 After World War II and the Korean War, racialized veterans could not take advantage of the GI Bill to assist with low-cost mortgages.11,24 HBCUs also had to turn down veterans wanting to use the GI Bill. This was due to losing money on these loans, and HBCUs were already among the poorest universities in the US.24

Several important civil rights rulings in the Supreme Court continued, with probably the most famous ruling in the 1954 case Brown v The Board of Education of Topeka (BvB). Over the next decade, there were many attempts at desegregating schools that were met with resistance.37 This also resulted in many racialized educators losing their jobs, and education was primarily taught by white Americans.15 Later, Milliken v Bradley (1974) determined that suburbs would not be accountable for segregation in urban areas.37 The decision prevented inter-district busing, making it impossible to integrate highly-segregated school districts.37 Another legal precedent was set in Regents of the University of California v Bakke (1978), in which the Supreme Court upheld Affirmative Action but invalidated the use of racial quotas.38 This ruling continues to result in further exclusion of racialized persons in healthcare professions.38 Then Riddick v School Board of the City of Norfolk (1986) allowed districts to dismantle their desegregation efforts once they were integrated.37 Many of the other exclusions discussed in the previous paragraphs allowed white Americans to prosper financially and to increase their generational wealth via housing—which again excludes racialized persons from physical therapy as customers and aspiring clinicians.

The Doctorate of Physical Therapy and Widening Inequities (1993 to Present)

The healthcare boom of the previous decades, as well as an early foundation on research, led to 1993’s first Doctorate of PT (DPT) class, begun at Creighton University.22,23 Leaders within PT saw the benefit of the DPT degree in defining the profession and leveraging nationwide autonomous practice. However, after the Balanced Budget Act of 1997 passed, many physical therapists experienced an economic downturn for the next several years.39 Finally, in the 1990’s, APTA made further efforts to increase diversity and inclusion within the profession. The Clinton Administration issued the following report in 1998:

As a result of the association’s initiatives, there have been significant results: Minority membership has increased from 2% to more than 10% since 1990, the number of minority students in PT education programs has increased from 6% to more than 12%, and more minority members are now serving in leadership positions and on committees (11.5%) than at any other time.40

Progress in PT continued into the next 2 decades. In 2000, APTA’s House of Delegates passed the landmark mission, “Vision 2020.”23 By 2003, licensure was obtained in every state.23 PT assistants sat for the first advanced proficiency exams in 2005 and the first PT residencies and fellowships were initiated. By 2016, “Vision 2020” had been achieved, with all physical therapy programs adopting a doctorate as the standard degree. As membership in APTA hit 100,000 members, the profession once again acknowledged a need to improve diversity, equity, and inclusion.23 In 2018, the National Association of Black Physical Therapy was formed independently of APTA.[3]* In 2020, the SARS-COVID-19 virus hit the US. Physical therapists were asked to provide rehabilitation on the front lines of the global health pandemic; this revealed many racial inequities.1 Many of the advancements in the profession as well as rapid growth of PT schools may have led to further exclusion of racialized applicants, which we further address in the discussion.

Continued Racism. Concurrently during this era, racism continued unopposed. Laws passed and policing practices made it easier to lock up racialized persons using drugs, despite Black and white Americans using drugs at similar rates.11 Black and Latinx Americans now make up nearly two-thirds of the prison population.24,41 Locking up this many people tore Black and Latinx communities apart financially, resulting in less homeownership, and poorly-funded education.24 Increased prison expansion left fewer federal dollars allocated to public education, healthcare, and public sector employment, which in turn affected racialized communities greater.24

Taking money out of schools but funding police officers in those schools allowed for the criminalization of racialized communities.24 This had a cyclical effect on these communities and has become known as the “school-to-prison pipeline.”24 Students who have darker skin and act out are more likely to be arrested in school compared to those with lighter skin who have the same behavioral issues.33 , a researcher reported he used Black Americans as subjects for radiation research because they, “don’t have any money, and they’re Black, and poorly washed.”17 This and other racially-biased research influences US healthcare to this day.

Recently, an interest in improving racism and racist structures has once again seemed to align purely with a political cause. News sources used the phrase “Black Lives Matter” less than half as frequently between 2017-2019 as compared to 2014-2016 when it was created.42 A few positive and mostly symbolic changes have come in the form of changing public symbols, such as: removing monuments to confederate soldiers, the Mississippi state flag, and Army barracks names. However, the push for improving racial equality has been dropped from the media following the election of Joseph R. Biden.

Gentrification continues to negatively affect racialized communities in urban areas across the country, which leads to increased segregated housing.43 This results in US schools trending back toward segregation.28,44 This is a direct effect of the failure to enforce fair housing practices, as racial steering still occurs.28,30,44,45 In segregated white American communities, this leads to less empathy for racialized groups.46 Even in schools with greater diversity, racial biases persist. For example, greater numbers of white children are in advanced programs compared to other racialized persons with similar test scores.46

The American Jobs Act in 2011 and the Lilly Ledbetter Fair Pay Act helped Black Americans close the unemployment gap, but not the wage gap. In 2019, the pay rate for Black Americans had increased; however, the pay rate gap compared to white Americans was worse that year than it was in 2000.47 Real estate ownership has long been a way to accumulate generational wealth, which in part leads to the wealth gap disparity seen between racial groups.48 There is roughly a gap of 30% in home ownership with white Americans owning a higher portion, but white Americans’ home valuation is also roughly $100,000 more.48 The data is even more lopsided when you compare white Americans with Latinx Americans.48 If these disparities in wealth continue at the same rate, it would take Black American families 228 years to amass the wealth of the average white American family today; and it would take a Latinx American family another 84 years.33

Discussion

In this article, we have provided a historical framework of structural racism that excludes racialized persons in the US. We juxtaposed the development of PT with historical events and briefly discussed the connections leading to exclusion of racialized persons in the US and in healthcare. Structural racism affects the health of individuals oppressed through exclusion.

We employed CRT, which highlights the causes of structural racism and seeks equality for racialized persons, to frame how laws marginalize people of color.3 In our article, we have discussed ways in which laws have led to exclusion in housing, finances, education, and other social determinants of health for racialized persons. We used 5 tenets from CRT to outline how racialized persons have been excluded from PT. Our narrative is the first to explore this exclusion of racialized persons from PT in the US, but it is similar to other literature regarding healthcare in Canada.2

Racism is Normalized Within the US and Not Aberrational

Overall, our article demonstrates consistent racism in the form of structural oppression to which all citizens of the US have become accustomed. The practice of colorblind racism started in the 1960’s to create the illusion that individuals and institutions were not being racist and has led to greater racial inequities today.12 Racism has become normalized or ordinary and is a daily occurrence for racialized persons.21

Educational Inequities. One example is in many PT programs’ admissions policies. Colorblind policies only consider grades; these, however, are not unbiased in a school system where racialized persons enter behind most white Americans and are discriminated against within the system.21 Even standardized test scores have been proven biased.49,50 These structures lead to greater exclusion of racialized persons during admissions processes.

Another such norm in the US that leads to exclusion of racialized persons, is meritocracy. Financial inequality comes out of structural and institutional practices affecting racialized persons in the US. The allotment of grant and scholarship funds based on merit within PT is likely inequitable. When generational wealth and household income are lower, students may have to work to help their families, or to put themselves through school. It is hard to rise to the top based on skills, grades, abilities, and efforts when someone must work to support self or family. Other students with higher socioeconomic status can spend more time studying and volunteering. This affects racialized persons negatively on admissions applications and for scholarships. Therefore, the majority of scholarships that are based on merit continue to create a widening opportunity gap between white Americans and racialized persons. We need to create new, need-based scholarships and other equitable ways to decrease the cost of obtaining a DPT degree.

Interest Convergence

Needed Changes in the PT Profession. Structural racism helps to keep white Americans atop the power heirarcy.3 As we noted previously, the only time white Americans seem to act in support of racialized persons is when the cause is mutually beneficial. Hartlep notes that white Americans are at the top of the social hierarchy in the US, and if they sought to help racialized persons with no personal gain, it would feel like they were being oppressed.21 Historically, interest convergence regarding racism has largely occured when politicians try to appease riots or get re-elected, or when other groups seek legislative changes, such as women’s suffrage or persons with disabilities.21

Currently in PT, there is a push to increase the number of racialized persons in the profession.51 We also saw this in the 1980’s through 1998 due to interest convergence. However, after the goal of increasing the number of racialized persons in the profession was met in the 1980s and 1990s, the PT profession lost sight of sustaining that goal. For some reason (eg, focusing on the repercussions of the Balanced Budget Act of 1997, or the increased push for colorblindness in this era), the profession lost focus in maintaining a continued goal of making the profession more accessible to racialized persons. Now, we may be in a worse situation than we were in the 1990’s when looking at the diversity of the profession.5

Racial representation matters for improving quality care in underserved communities; therefore, PT needs to change.52,53 This change takes time but needs to start now if there is any hope of making improvements by the next decade. We must address other issues of exclusion and dismantle the institutional racism still within PT. Otherwise, it’s like putting a band-aid on a pressure ulcer and then putting pressure back on the wound. The medical profession is succeeding in changing their admissions, where now roughly half of those admitted into medical schools are racialized persons.54 In 2008, Black physicians comprised only 2.2% of the physicians in the US, which was lower than the rate in 1910 at 2.5%.26 Admissions to medical schools over the last 5 years have increased in the number of racialized persons admitted as well as achieving equal gender representation in their admissions.54 These students who identify as racialized now make up slightly more than half of medical school admissions across the country.54 Why are PT programs, whose white Americans make up 70% of total admission,55 slow to react to these changes and keep up with the rest of the medical field?

PT Education Challenges. Exclusion of racialized persons admitted to PT programs also stems from systemic racism’s structure of the public education system. Where racialized persons live is currently becoming increasingly segregated. Historical trends have led to poorer housing values where property taxes fund the local public schools.33 Therefore, the school systems in racialized ZIP Codes are less well-funded. Less funding results in greater turnover of teachers and thus lower-quality and disjointed education.33 Before entering the public school system, white children whose parents can afford preschools or childcare are ahead of many Black students.33 It is no wonder that there are direct correlations between socioeconomic status and standardized testing scores, including the Graduate Record Examinations.49,50 Students with lower standardized testing scores can become great physical therapists, but may need financial and other support structures.

Since the Clinton administration, admissions of racialized persons to PT school have increased from 12% to roughly 30% and continue to slowly trend upward.40,55 This is thankfully the case despite moving all schools to a doctorate program, which causes greater financial commitment and strain on racialized persons compared to the average white American. There is, however, even greater exclusion of racialized persons when we compare the statistics of applicants compared to those accepted into DPT programs. In 2018-2019, 65.2% of applicants identified as white Americans and 32.7% identified as racialized persons.55 A greater percentage of white Americans were accepted into PT school, whereas racialized persons were excluded further (acceptance rates of 70.6% and 27.25% respectively, worse if you analyze specific racial demographics).55 This likely stems from racial bias in the admissions process stemming from structural oppression. Part of the problem may have been the rapid expansion in the total number of PT programs in the US without having a greater commitment from the professional body of PT to address this disparity. The ruling in Regents of the University of California v Bakke (1978)further complicates this issue. However, there are still ways PT programs can assess and improve their admissions processes.

Further exclusion happens once racialized persons are in PT school. Black PT students make up to 70% of the attrition rate from DPT programs.5 Individual institutions need to recognize the barriers of getting into graduate school, challenges within school, value diversity to drive the profession forward and meet the needs of society and address all barriers for racialized consumers. The profession and individual institutions can and need to do more, now.

Social Construction of Race

Science has, many times over, disproven that race can be defined genetically.9 This is evident in how the concept of race has changed over time to fit the needs of racism.10,11 Consider the example of someone who was defined by the “one drop rule.”21 This rule stated that if there was any lineage of non-white ancestry (even “one drop”) it tainted that person’s whiteness, and they were identified as the “inferior” non-white race. Historically, this social construction of race has led to many disparities in housing, wealth, education, and health, as we have detailed herein.

Ongoing Financial Barriers. The consequences of the many past actions in the US based on socially-defined race have made academic, hiring, and treatment practices exclusionary in PT. One reason consumers of PT are excluded is due to structural racism’s impact on finances. In the second quarter of 2020, the insurance market in the US made a profit of more than $12 billion.56 Today’s average monthly cost of insurance is $413.34.57 Families of low socioeconomic status or who are unemployed have to choose between paying for rent, food, or medical expenses.12,58 Most need to travel to their medical appointments, which costs more money.58

Medicare and Medicaid recipients bring additional complexity to this topic. In a recent report people with Medicare were found to be 2 times less likely to attend their first PT session, and those with Medicaid were 5 times less likely to attend, compared to private insurance recipients.58 More white Americans are likely to have Medicare, and racialized persons are more likely to have Medicaid.59,60 Black and Latinx Americans are less likely to discharge from the hospital to a rehab facility61 and have worse outcomes at every level of rehabilitation.19,20 The passing of the Affordable Care Act in 2010 led to significantly improved access to insurance for Latinx and Black Americans.62,63 This also led to an increase in PT utilization from the lower middle class around the same time.18 However, this law is under attack, which would again exclude more racialized persons from accessing healthcare.

Dangers to Health and Wellbeing. Exclusion of racialized persons within a healthcare system also persists due to the legacy of racism—specifically, the ‘superiority and inferiority’ beliefs. We highlighted studies showing racial bias and overt racism. There has been a large amount of racist research persisting into the 1990s.16 This is reflected in current research that shows current medical students still hold the false belief that Black Americans have higher pain tolerances.17,64,65 Not all blame for distrust of the medical community can be placed on historical events such as the Tuskegee syphilis study, as Black Americans and other racialized persons still experience discrimination and abuse within the field daily.17,66,67 Black Americans and other racialized persons receive fewer pain medications for terminal cancer and undergo higher rates of amputation and other invasive procedures.17,33,66,68

While racial biases are becoming more well-documented in the medical field, they are not yet as clearly defined in PT. We do know that discrimination leads to higher stress, premature aging, and death.33 In terms of PT, it may result in higher levels of disability. Explicit and implicit racial biases continue to propagate discriminatory practices within the PT field. If the profession of PT is truly investigating how we can transform society, then we need to address all areas of health, including ending discriminatory practices, as they lead to limited or inadequate access to healthcare. As stated previously, discrimination has a negative impact on social determinants of health, which in turn will lead to poorer outcomes.

Storytelling and Counter Storytelling

History in general is told and recorded from the dominant perspective. This was the Eurocentric philosophy through generations. Not until recently have US historians accepted storytelling from marginalized perspectives as legitimate sources. Our narrative overall highlighted a counter story narrative to typical history textbooks. It is also important to note that the media plays a large role in creating a white-focused narrative. Only when it suits the media, when there is interest convergence, do we typically see counter storytelling in mainstream media.

Research is just starting to illuminate the stories of racialized persons within PT programs. Hughes et al3 interviewed racialized students and former students and found several themes. Some of the themes uncovered were the following: 1) the PT program’s centering on whiteness as the norm; 2) the connectedness of personally-mediated and institutional racism; 3) white oblivion to the experiences of racialized persons at all levels of PT education; 4) the harmful impact of the cumulative effect on racialized students of existing in an environment invisible to white faculty; and 5) the necessity to adapt survival strategies against the racism within the program.3 Ultimately, these themes lead to the exclusion of racialized persons within PT programs.

Recently, the APTA House of Delegates adopted a new professional value of inclusivity and moved to declare that APTA is an anti-racist organization. This came through storytelling during the HOD caucus. Both actions are important for the profession to move forward. Without storytelling, the vote would not have passed. The only way to get rid of racism is to be anti-racist.11 As previously mentioned, being colorblind or adopting a passive stance is a win for racism. Continuing to listen to racialized persons is an important value that needs to be valued more.

White Americans Have Been the Beneficiaries of Civil Rights Legislation

Structural racism is cemented in the laws and judicial rulings of the US. Throughout history, white Americans have received the most benefit from civil rights legislation.21 This is well established with the GI bill, Affirmative Action, and the Affordable Care Act. Although mild improvements were made throughout history regarding healthcare access for racialized persons, over time, racism adapts to find ways to exclude these people again.21 As aforementioned, the Affordable Care Act helped both white Americans and racialized persons gain better access to healthcare.62,63 Now structural racism via political means once again adapts and looks for ways to attack this improvement in access. 

The BvB ruling was eventually a win for white Americans, especially with the following rulings such as Millikin vs Bradly. If you scrutinize the history following this Supreme Court decision, it took time to integrate racialized persons into white schools. For example, in 1956, an entire public school district shut its doors and all the white students went to private school, but Black students in that district did not have any options for school for 5 years.69 Examining the history of redlining, white flight, covenants, and racial steering demonstrates why urban schools were more segregated and had greater financial concerns. Another result of BvB is the loss of racialized teachers. Jobs in desegregated schools went in favor of white Americans.33 This may have led to the curriculum never being integrated, which upheld the principles of white-centered structural racism.

Also, desegregation will not be the only action needed to solve this issue and may not be the solution for all school districts. Funding in neighborhoods remains a large part of the issue due to home price inequality.43 This has again been a win of structural racism over time, despite civil rights legislation. This is similar to what we see when redlining was made illegal, and the legal ruling did not stop racial segregation.44 Neighborhoods are more segregated now than they have been in the past.70 If the ruling against redlining was a win for racialized persons, then you would not still see so many segregated neighborhoods. “Racism is illegal, so it does not happen” is the argument still heard today. This segregation benefits white Americans through greater generational wealth building and better educational systems placing them at the top of the power hierarchy in the US.70

Limitations

As we conclude, we note that this article has several limitations. This is not an absolute or complete history of either the US, PT, or structural racism. We acknowledge our own positionality in writing this article and realize that racism is not the only form of oppression in the US. Therefore, this article may not adequately reflect or capture the experiences and intersectionality of all oppressed or disadvantaged persons within the US. We also recognize that other frameworks exist that may offer additional viewpoints such as post-colonialism or viewing US society as a class or caste system.33

Summary and Conclusion

The development of PT in the US has been influenced by the structures put in place to oppress racialized persons. As demonstrated in this article, structural racism shapes exclusion of racialized persons from all levels of PT.4,12 This is consistent with other previous reports demonstrating exclusion from PT in the US.16 As Washington states, the history of the US:

“race, culture, and economics have trumped medical and scientific truths at every turn…not because [physicians] were especially racist or unfair, although many were, but because the culture of American medicine has mirrored the larger culture.”17 

Racism has been a powerful force throughout history in the US. At every turn when small progress was made, structural racism adapted. It is important that we get a better understanding of why and how this adaptation and return to the status quo occurs seemingly instantaneously with any progress that is made. As the PT profession continues to strive to become autonomous practitioners of choice, we must not only be able to self-reflect on our actions, but also be courageous enough to ask tough questions in our individual areas about how we move forward. Is it curriculum changes, policy changes within organizations, changes to standardized tests, or changes to admissions practices? We must acknowledge that racism does not just operate overtly, but rather, it is all around us.15,16 Racism is not the shark, it is the polluted water that engulfs us.3 Radical dismantling of the structures in place is needed to truly make lasting change.4,21

[1]* In this article we decided to follow many of our cited sources’ language to describe races within the US. The term white Americans is not capitalized due to the lack of common cultural thread to tie all white Americans together outside of being American. We chose to use and capitalize the term Black Americans over African Americans as it is more inclusive and has a common cultural thread due to the history of oppression. In the same light, we use the term Latinx Americans as this is more inclusive and also has a common history of oppression within the US. We chose not to use the word minorities unless it was used from a specific resource, as people of color in the global community make up the majority of people on this planet. We also acknowledge that the term Americans can mean anyone from North or South America, but in the context of this article, we are talking about those who live in the US.

[2]* This article focuses on telling stories from a counter narrative of racialized persons and we do not directly address this tenet until the discussion of this article.

[3]* We are aware of this fact as close friends and colleagues formed the NABPT

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    57.  Fontinelle A. What Does It Cost to Buy Health Insurance? Investopedia. Published October 28, 2019. Available at: https://www.investopedia.com/how-much-does-health-insurance-cost-4774184. Accessed October 20, 2021.

    58. Briggs M, Ulses C, VanEtten L, Mansfield C, Ganim A, Hand BN, et al.  Predictive factors for patient’s failure to show for initial outpatient physical therapist evaluation.  Phys Ther. 2021;101(5). DOI: 10.1093/ptj/pzab047. PMID: 33528021

    59.  A Data Book: Health Care Spending and the Medicare Program. Section 2: Medicare Beneficiary Demographics. MedPAC; 2017:19-25. Available at: http://www.medpac.gov/docs/default-source/data-book/jun17_databooksec2_sec.pdf. Accessed May 9, 2021.

    60. Artiga S, Hill L. Health-care Coverage by Race and Ethnicity 2010-2021. Published Dec 20, 2022. https://www.kff.org/racial-equity-and-health-policy/issue-brief/health-coverage-by-race-and-ethnicity/. Accessed April 24, 2023.

    61. Gorman E, Frangos S, DiMaggio C, Bukur M, Klein M, Pacher H, et al.  Is trauma center designation associated with disparities in discharge to rehabilitation centers among elderly patients with traumatic brain injury?  Am J Surg.  2020;219(4):587-591.

    62. Sohn H. Racial and ethnic disparities in health insurance coverage: dynamics of gaining and losing coverage over the life-course. Popul Res Policy Rev. 2017;36(2):181-201. doi:10.1007/s11113-016-9416-y

    63. Buchmueller TC, Levinson ZM, Levy HG, Wolfe BL. Effect of the Affordable Care Act on racial and ethnic disparities in health insurance coverage. Am J Public Health. 2016;106(8):1416-21. doi: 10.2105/AJPH.2016.303155. Epub 2016 May 19. PMID: 27196653; PMCID: PMC4940635.

    64. Hoffman KM, Trawalter S, Axt JR, Oliver MN. Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites. Proc Natl Acad Sci USA. 2016;113(16):4296-4301. doi:10.1073/pnas.1516047113

    65. Reynolds-Losin EA, Woo CW, Medina NA, Andrews-Hanna JR, Eisenbarth H, Wager TD. Neural and sociocultural mediators of ethnic differences in pain. Nat Hum Behav. 2020;4(5):517-530. doi: 10.1038/s41562-020-0819-8. Epub 2020 Feb 3. Erratum in: Nat Hum Behav. 2020 Mar 3: PMID: 32015488; PMCID: PMC7494052.

    66. Bajaj SS, Stanford FC. Beyond Tuskegee – Vaccine Distrust and Everyday Racism. N Engl J Med. 20214;384(5):e12. doi: 10.1056/NEJMpv2035827. Epub 2021 Jan 20. PMID: 33471971.

    67. Amutah C, Greenidge K, Mante A, Munyikwa M, Surya SL, Higginbotham E, et al. Misrepresenting race – the role of medical schools in propagating physician bias. N Engl J Med. 2021;384(9):872-878. doi: 10.1056/NEJMms2025768. Epub 2021 Jan 6. PMID: 33406326.

    68. Jha AK, Fisher ES, Li Z, Orav EJ, Epstein AM. Racial trends in the use of major procedures among the elderly. N Engl J Med. 2005;353(7):683-91. doi: 10.1056/NEJMsa050672. PMID: 16107621.

    69. In the 1950s, rather than integrate some public schools, Virginia closed them. The Guardian. Published November 27, 2021. Available at: https://www.theguardian.com/world/2021/nov/27/integration-public-schools-massive-resistance-virginia-1950s. Accessed June 15, 2022.

    70. The Roots of Structural Racism Project. Othering & Belonging Institute. Available at: https://belonging.berkeley.edu/roots-structural-racism. Accessed June 15, 2022.

About the Author(s)

Brian J. Maloney PT, DPT

Brian J. Maloney PT, DPT is an Assistant Professor at the University of North Georgia. He received his Doctor of Physical Therapy degree from Emory University in 2011. Dr. Maloney is a Board-Certified Neurologic Clinical Specialist, and he clinically continues to practice in neurological rehabilitation one day per week. He is active in community service, social and healthcare justice, and advocacy for the PT profession. At the University of North Georgia, he serves as the Physical Therapy DEI representative for his graduate school DEI counsel. He is also a delegate for APTA Georgia and the second vice-president of the Academy of Aquatic Physical Therapy. Dr. Maloney incorporates humanities into his courses so that his students can explore the complexity of and develop empathy for the people they serve.

Maurice Z. Middleton, PT, DPT

Maurice Z. Middleton, PT, DPT graduated from Emory University with a Bachelor of Science degree in Biology. After his undergraduate degree he was commissioned as a Lieutenant into the United States Army. He served eight years in the US Army, deploying once to Iraq and once to Afghanistan. He has earned two Bronze Stars, one with Valor, for his service. After his military service he graduated from Emory University’s Doctor of Physical Therapy program in 2013. Dr. Middleton has been practicing Physical Therapy at the Atlanta VA Healthcare System since 2014. The ongoing displays of social injustice, combined with raising two young African-American boys and his passion to help others, have inspired him to take a more active role in advocating for change. Dr. Middleton believes that the humanities are one way to close the racial inequality gap in the physical therapy profession.

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Doing Healthcare Research Differently: An Introduction to SocioHealthLab’s Special Video Series, Part 2 https://jhrehabredesign.ecdsdev.org/2022/11/14/doing-healthcare-research-differently-an-introduction-to-sociohealthlabs-special-video-series-part-2/ Mon, 14 Nov 2022 05:02:50 +0000 https://jhrehabredesign.ecdsdev.org/?p=8721

Doing Healthcare Research Differently: An Introduction to SocioHealthLab’s Special Video Series, Part 2

Tim Barlott, PhD, MScRS, BScOT & Rebecca E. Olson, PhD, BA (Hons) & Jenny Setchell, PhD, BSc (Pty)

Table of Contents

Established in 2019, SocioHealthLab is a research collective of health and social science researchers, practitioners and students from Australia and around the world, striving for healthcare transformation through applied, justice-oriented, theory-driven, creative and collaborative socio-cultural research. In short, we come together to challenge each other to do health and healthcare differently.

This is the second of two installments within our special video series with the Journal of Humanities in Rehabilitation, both guided by the artistic direction of developmental sociologist, political scientist, and award-winning documentary filmmaker Andreas Hernandez. Like the first installment, these five videos/stories take many forms and have a variety of foci. Bonnie Cheng’s video1 is a poetic meditation on navigating the question ‘Will I get better?’ with people experiencing aphasia. Lynda Shevellar’s video2 engages a plurality of voices and images to evocatively explore collective narratives of international students in an Australian university. A different take on ‘voice’ comes from Stefanie Plage3 and her research participant ‘Luke’ as they entangle in the social complexities of smoking and cancer. The submission from Rebecca Olson and Daniela Wilhelms4 draws together Wilhelms’ photographic and video art with metaphor to bring meaning to healthcare professionals’ journeys through COVID-19. Finally, Chloe Bryant’s piece5 examines healthcare related to sex and intimacy in the disability space.

The storytelling found in this special series is part of our becoming. Stories are how communities teach one another their values, produce theories on how the world works, and rework one’s place in it. Stories, and the storying of this video series, also invite us to transgress our disciplinarity; the authors in this second installment cut across health disciplines, sociology, community development, and methodological and theoretical approaches. The artful crafting of stories opens us to what Natalie Loveless6 refers to as ‘polydisciplinamory,’ affectionately “pushing at, and defamiliarizing, the limits of disciplinary boundaries” (p. 60). Through the stories in this second installment, we learn and share with others our values that cut across and agitate our disciplinarity: vulnerability, justice, (more-than) human-centred approaches to care, and a deep curiosity in theory’s transformative potentiation.

The videos are designed to be a multi-sensory experience, differing from usual academic forms of expression. They are brief, so put aside a little time, find a quiet space, put on some headphones, and join us in our stories.

SocioHealthLab is an inclusive research collective where anyone is welcome to participate in our conversations on health and healthcare. After spending some time with our story/stories in this special series, you may wish to join our collective. You can find more information about us – including our contact details – on our website: https://shrs.uq.edu.au/research/sociohealthlab

A Difficult Conversation

By Bonnie Cheng

‘Will I get better?’ is something most patients want to know. But, for aphasia – a language impairment that can leave someone unable to speak, read, write, or understand words – there’s no straightforward answer. Through a series of semi-structured interviews with 25 speech pathologists working with people living with aphasia, the intricacies of balancing hope with realistic expectations while navigating uncertainty were explored. Here are the findings in poetry.

Voice and image: A case study of dis/embodied research on cancer survivorship

By Stefanie Plage, PhD

In this video, Stefanie Plage reflects on her experience conducting research on cancer survivorship combining participant-produced photography and story-telling with Luke, a research participant diagnosed with lung, prostate and throat cancer. Luke and Stefanie grapple with the socio-cultural meanings attributed to smoking and cancer, the feelings we bring to our research and how these complexities bear on our capacities to voice, picture, see and listen.

Supporting wellbeing for international students in tertiary education: A collective narrative approach.

By Lynda Shevellar, PhD; Christian Seja, MDP; Phillipa Johnson, MNTCW; and Adrienne McGhee, PhD 

https://vimeo.com/720446507

International students face unique challenges during their university experiences, including language and cultural differences, adapting to new environments, and academic demands. This project sought to better understand wellbeing for 13 international postgraduate students. Collective Narrative Practice was employed to explore the hardships international students faced, as well as what sustained them through hard times. The results suggest that despite the growth of the mass tertiary education system, not only is there still a vital place for local, small-scale responses to students, but that in our increasingly globalised digital world, local dialogical responses may make the fundamental difference to student learning.

Uncharted waters: Metaphor and health professionals’ stories of COVID-19

By Rebecca Olson, PhD; and Daniela Montano Wilhelms, MD

COVID-19 has overwhelmed all of us, especially healthcare professionals. Storytelling is central to recovery – allowing us to recognize ourselves in another’s tale, turn an object of fear into something more familiar, and find meaning in suffering. In this video, we offer a cinematic sequel to research into Australian, Brazilian and New Zealand health professionals’ COVID-19 narratives. We blend familiar water metaphors into our storytelling, helping us attune our emotions and make tumultuous stories familiar, as we recognize ourselves in the unfolding tale and reflect on who and how to be.

Let’s talk about sexuality… after a spinal cord injury

By Chloe Bryant, BOccThy (Hons)

“Pleasure is a human right for all people. We should strive to be inclusive and to encourage enjoyment and pleasure from intimacy.”

In this video, Chloe Bryant discusses her PhD research, which has explored how healthcare professionals address sexuality after spinal cord injury. Chloe discusses the importance of supporting a person’s sexual and intimacy needs after they have sustained a spinal cord injury. The video discusses how stigma and assumptions impact how we view sexuality and disability in society. It challenges viewers to consider how we can improve the way that sexuality is viewed and addressed within a healthcare context.

References

  1. Cheng, B. (2022). A difficult conversation. Journal of Humanities in Rehabilitation, 9(2).
  2. Shevellar, L. (2022). Supporting wellbeing for international students in tertiary education: A collective narrative approach. Journal of Humanities in Rehabilitation, 9(2).
  3. Plage, S. (2022). Voice and image: A case study of dis/embodied research on cancer survivorship. Journal of Humanities in Rehabilitation, 9(2).
  4. Olson, R., & Wilhelms, D. (2022). Uncharted waters: Metaphor and health professionals’ stories of COVID-19. Journal of Humanities in Rehabilitation, 9(2).
  5. Bryant, C. (2022). Let’s talk about sexuality…after a spinal cord injury. Journal of Humanities in Rehabilitation, 9(2).
  6. Loveless, N. (2019). How to make art and the end of the world: A manifesto for research-creation. Duke University Press.

About the Author(s)

Tim Barlott, PhD, MScRS, BScOT

Tim Barlott, PhD, MSc, Grad Cert (Community-Based Participatory Research) BScOT, is an Assistant Professor in the Department of Occupational Therapy at the University of Alberta and Co-Director of the SocioHealthLab at The University of Queensland (UQ), Australia. Tim’s research is at the interface of health service delivery and the sociology of health, interrogating the socio-political aspects of everyday life and pursuing affirmative/transformative possibilities. In particular, Tim is interested in allyship and the value of freely-given relationships in community mental health, considered through post-modern and new materialist theoretical perspectives. Using community-based approaches, Tim’s research is built on collaborative relationships with community partners and the co-construction of research processes. Tim’s research is published across sociology, rehabilitation, occupational science, occupational therapy, philosophy, and qualitative methods. Tim has over 15 years of experience as a community practitioner (occupational therapist, addictions counsellor, and youth worker), educator, and participatory researcher in Canada, Australia, and internationally.

Rebecca E. Olson, PhD, BA (Hons)

Rebecca E. Olson is an Associate Professor in Sociology, University of Queensland. Funded by competitive national grants, her research intersects the sociologies of health and emotion. As a leading innovative qualitative researcher, Olson employs video-based, participatory, reflexive, post-qualitative and post-paradigmatic approaches to inform translational inquiry in healthcare and healthcare education settings. Her recent books include Towards a Sociology of Cancer Caregiving: Time to Feel (Routledge, 2015) and Emotions in Late Modernity (Routledge, 2019, co-edited with Patulny, Bellocchi, Khorana, McKenzie and Peterie). Olson also minored in political theatre and has been a dancer or community dance teacher for most of her life.

Jenny Setchell, PhD, BSc (Pty)

Dr Setchell is Senior Research Fellow, School of Health and Rehabilitation Sciences, University of Queensland, Australia. Research interests include critical perspectives on rehabilitation and physiotherapy, and using post-modern and new-materialist theories to enhance healthcare equity. Dr Setchell has received numerous grants and awards, including a prestigious NHMRC Fellowship. They have 20 years of diverse clinical physiotherapy experience, primarily in the musculoskeletal sub-discipline. Dr Setchell is co-founder of the Critical Physiotherapy Network, an international network of physiotherapists across 30+ countries working toward more socio-politically conscious rehabilitation. Dr Setchell has been an acrobat and a human rights worker.

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Accommodating Students With Disabilities in Professional Rehabilitation Programs: An Institutional Ethnography Informed Study https://jhrehabredesign.ecdsdev.org/2022/11/14/accommodating-students-with-disabilities-in-professional-rehabilitation-programs-an-institutional-ethnography-informed-study/ Mon, 14 Nov 2022 05:01:33 +0000 https://jhrehabredesign.ecdsdev.org/?p=8858

Accommodating Students With Disabilities in Professional Rehabilitation Programs: An Institutional Ethnography Informed Study

Shaminder Dhillon, PhD candidate & Sandra Moll, PhD & Magda Stroińska, MA, PhD & Patricia Solomon, PhD

Table of Contents

Background: Health and human service professionals with disabilities have unique experiences and knowledge to share with clients. However, people with disabilities continue to be underrepresented in rehabilitation education programs and professions. Research indicates that educators experience challenges in accommodating students with disabilities due to a myriad of professional program requirements. Research also suggests that educators reproduce ableist practices in these programs.

Objectives: To determine how the accommodation work of occupational therapy and physiotherapy educators is being organized by institutional expectations and practices and to critically reflect on how this impacts the accommodation process.

Methods: In this institutional ethnography informed study, 11 educators and 4 staff members from one Canadian university were interviewed about their work of accommodating students with disabilities in the university-based courses of the occupational therapy and physiotherapy programs. The analytic strategies of mapping, indexing and writing were implemented to reveal the problematic and the ruling relations governing educators.

Results: The problematic experienced by educators in this study is their struggle to reconcile 2 competing ruling relations in the accommodation process: the focus on students in the educational institution context with the focus on clients in professional and healthcare/social system contexts.

Conclusion: Critical consciousness is needed to recognize and reconcile this false dichotomy. Educators will need to be open to accommodations that may not resonate with their experience of the profession but assist students in learning and demonstrating their learning. However, educators require clarity from stakeholders in the professions about essential requirements for entry-level practice.

Introduction

Health and human service professions need to reflect the diversity in society.1,2 Clients and their caregivers perceive positive impacts from working with health and human service professionals who have disabilities, including these professionals’ understanding, empathy, knowledge of systems, and potential to be role models.3 Students with disabilities in health and human service programs, and professionals with disabilities report having attributes that equip them to empathize with clients and address the barriers that clients experience.4–8 However, disability is underrepresented in the health and human service workforce.9 While changes to legislation have resulted in an increase in the admission of students with disabilities in these programs,2,4,10,11 their academic performance and graduation rates are lower than students without disabilities.12–14

Recent research indicates that health and human service professionals reproduce ableist practices at different levels and in different ways.1,15 Bulk and colleagues15 interviewed students with disabilities, a professional with a disability, and stakeholders including preceptors, faculty, and representatives from regulatory organizations to understand the barriers experienced by students with disabilities in professional programs. They found that societal marginalization occurred through a dominant discourse where disability is presented as a problem and both students and professionals with disabilities are devalued. Institutional marginalization was reflected in rigid program structures, bureaucracy concerning accommodations, and assumptions that professionals do not have disabilities. Interpersonal marginalization occurred through power differences between disabled and non-disabled peers and between disabled students and faculty. Easterbrook and colleagues1 found that participants similar to those in the study by Bulk and colleagues, justified their ableist actions through assumptions about the rationality, autonomy and productivity of people with disabilities. Stakeholders questioned disabled students’ rationality when they expressed concerns about disabled students’ ability to practice safely. They limited student autonomy with inflexible programs and arguments about the limitations of the real world. They excluded or did not accommodate disabled students based on assumptions about their ability to complete the program and practice the profession.

Occupational therapy and physiotherapy professionals value the inclusion and participation of all members of society, particularly people with disabilities.16 However, in the role of educators, these professionals struggle to accommodate students with disabilities due to the myriad of requirements educational programs must address, such as professional competencies, accreditation standards and university degree-level expectations.11,17 As mentioned, there is some literature that points to ableism as an explanation for the educators’ difficulties.1,4,15

Institutional ethnography is a methodology that makes visible the intersection between people’s everyday experiences (ethnography) and organizational structures (institutions).18–20 The premise of this approach is that the daily activities of individuals are controlled by institutional or ruling relations.18 In other words, the experiences and actions of educators in the accommodation process are organized by a complex set of institutional expectations. Institutional ethnography enables invisible ruling relations to become visible, revealing opportunities for transformation within organizational processes.18 Our purpose was to use an institutional ethnographic approach to understand how the actions of educators in professional programs are shaped by ruling relations governing the accommodation of students with disabilities and to critically reflect on how this impacts the accommodation process.

Methods

The Research Team

The research team includes educators: 2 occupational therapists, a physiotherapist, and 2 from disciplines outside of rehabilitation. The first author, who conducted the interviews and led analysis, is an educator in one of the programs and thus, had experiences coordinating courses, teaching sessions, tutoring, and accommodating students with disabilities. The first author was self-aware of their position as an insider within the current ideology (discourse in the field/profession) in order to critically reflect on the social relations of power in the accommodation process.24

As an insider, the first author was also aware of texts and institutional language related to accommodations and teaching in professional rehabilitation programs. This knowledge is explicitly articulated in the results section herein; for example, by invoking the texts describing program structure and philosophy. To ensure that the first author did not fall prey to institutional capture, which is the unintentional uptake of institutional discourse that makes ruling relations invisible, they engaged in reflexive analysis of assumptions and judgments through journaling and discussion with the research team.19,21

Institutional Ethnography

Institutional ethnography is both a theory and methodology.21,22 It is materialist in nature, such that its focus is on the actual activities of people in their everyday lives.22,23 The theory posits that institutions, which are embedded in broader social discourses, coordinate the activities of people who participate in work processes created for them but not by them.24 By understanding what people do in their everyday lives, the researcher begins to understand how the work of people is socially organized.20 Institutional ethnographers are interested in exploring and exposing the ruling relations of work, a particular subset of social relations.18 Ruling relations serve to protect and maintain interests broader than the local context under study.19 This is accomplished through ruling texts or taken-for-granted instruments that are activated by workers in a particular context and coordinate the actions of others elsewhere.24 Thus, the results of an institutional ethnography have translocal implications for the individuals whose work is being explored. Dorothy Smith, the founder of institutional ethnography, conceptualizes work as both paid and unpaid, visible and invisible, and includes aspects that are often taken-for-granted.25 In this study, we define the work of educators as engaging in the process of accommodating students with disabilities.

An institutional ethnography begins with a disjuncture or a disconnect between individuals’ experiences of the world, in comparison to the authorized knowing of these experiences, because the purpose of this method is to make visible the ruling relations that are causing the disconnect.19 Based on the literature, a disjuncture for educators in professional rehabilitation programs is the disconnect between the values of inclusion and participation in rehabilitation with the challenges experienced by educators when accommodating students with disabilities. Once the disjuncture is named, data is required to explicate it.24 

Data Collection

An institutional ethnography involves taking a standpoint in the accommodation process, which will reveal a particular set of tensions and specific knowledge understood by the standpoint informants.21 In this study, the standpoint is that of educators teaching in the occupational therapy and physiotherapy programs at a mid-size university in Canada. Ethics approval was obtained from the research ethics board at the university.

We recruited educators in university-based courses who had provided disability-related accommodations in the last 5 years. They included university-based faculty and adjunct faculty whose primary roles were clinical. Email invitations were sent to a purposive sample of educators who taught different courses using a variety of delivery formats to ensure a range of perspectives. Twelve of the 25 core faculty and 5 of the approximately 100 adjunct faculty in the rehabilitation sciences provided accommodations in the past 5 years and were invited to participate in the study.

While we sought the standpoint of educators, we recognized the value of input from other key stakeholders in the accommodation process who could provide second-level data about organizing structures that are beyond the knowledge of the standpoint informants.24 We therefore invited 4 additional participants from the Human Rights office, the Ombudsperson office, the Disability Services office, and the Rehabilitation Department who had worked with student occupational therapists or physiotherapists with disability-related accommodations in the last 2 years. These staff members were noted by the standpoint informants to be key actors in the accommodation process, or chain of action.26

We conducted in-depth semi-structured interviews approximately one hour in length, to understand informants’ daily work activities and experiences related to the accommodation process. These day-to-day experiences were a gateway into the social relations of their accommodations work.27 The first author interviewed each informant, probing for references to specific texts (documents and expectations) guiding their actions.26 Since a pre-determined interview guide is contrary to the spirit of an institutional ethnography, we developed broad questions to capture the social relations emerging in the data,24,26 including: 1) Where does the accommodation process begin for you? 2) What do you do in the accommodation process? 3) How do you accomplish this work?

All interviews were recorded and transcribed verbatim.26 Each informant was assigned a pseudonym to ensure anonymity. Documents were also collected as data in this study, including texts noted by informants that shaped their actions in relation to supporting students with disabilities. This included texts that were explicitly named, as well as implicit references to program texts that shaped educators’ actions. Interviews and document analysis continued until the chain of action related to the accommodation process, and the social relations of the phenomenon were mapped.24,26 In the study, this process ended when no new actors or actions were identified.

Data Analysis

Where data collection explores the ruling relations or institutional structures as they impact the daily experiences of participants, data analysis explains how the process unfolds.18 From the data, researchers discover and explicate a research problematic, which then organizes the research analysis process.21 This problematic is characterized as a dissonance between informants’ knowing and experience versus the authorized knowing as seen in the data.21 To discover the problematic, we reviewed each transcript to notice instances when the informant described tensions in their accommodation work between what they experienced and how it was represented. We noticed when these same tensions were being described by different educators located in different places and at different times in the accommodation process and wrote about these accounts to better understand the problematic. This problematic provided a focal point for further analysis.

Three common analytic strategies assist in orienting to the data and understanding how the problematic occurs: mapping, indexing, and writing.21

  • Mapping is a concrete action that involves identifying and sequencing the actors and their actions in the work We reviewed each informant’s transcript for their entry point into the accommodation process and mapped the subsequent chain of actions, including who was involved and how.
  • Indexing is an analytic strategy that clusters data into linked occurrences.21 This strategy ensures that researchers remain in the materiality of the study as abstraction and theorizing are avoided.21 We focused on the work of informants by indexing the rich descriptions they provided of work that was linked to others. For example, informants in different roles described the work involved in student appeals and human rights complaints. We indexed their descriptions together as quotes in a Word document, rather than preparing interpretive summaries.
  • Analysis continues through writing, with a preliminary sketch of the overall argument concerning the ruling relations.21,24 The argument is built using “chunks” of data written as analytic points, presenting evidence for the overall argument. As more points are added, the overall argument is refined until the final version fully explains the data in relation to the work process and the relations of power that privilege some approaches and marginalize others.24 By writing about the analytic points that explicated how educators’ work was being organized, the way in which these ruling relations operated were made visible.

Results

The Informants

Six educators (5 core and 1 adjunct faculty) from the occupational therapy program and 5 educators (all core faculty) from the physiotherapy program participated in the study. Their teaching experience ranged between 5 to 40 years; their practice experience in their profession ranged between 10 to 45 years. Informants worked with clients across the life span with expertise in: musculoskeletal/orthopedic health; cardiology/respirology health; mental health; chronic diseases; neurorehabilitation; and social determinants of health. Nine informants had served multiple educational roles (eg, Program Head, Term Chair, Tutor, and Course Coordinator); 2 had experience in one role only. In addition to the educators, 4 staff members from campus offices participated in the study, including Disability Services, Human Rights, and the Rehabilitation Department. These informants had been in their roles from 4 to 31 years, and three had a professional designation prior to this role. They confirmed the accommodation process explicated by the educators but did not offer any new insights beyond the reach of the standpoint sample.

The Texts

The only text explicitly invoked by all the informants was the students’ accommodation plans. In most instances, this plan was the entry point for the educator in the accommodation process. Informants received email notification regarding student accommodation plan(s), which they reviewed to understand their responsibilities in ensuring barrier-free access to learning for each student. Each plan varied depending on the student’s needs and the accommodations as articulated by the staff at Disability Services.

The informants explicitly indicated that there were no texts from the rehabilitation field involved in their accommodation work. However, they identified content from texts in the program and university when explaining this work. As an insider, the first author was familiar with the content. The texts, their purpose and the context in which they were invoked by informants is listed in the Table.

Table: Ruling Texts

TextPurposeActivation in the Accommodation Process
Term HandbooksThese handbooks are updated by faculty and provided to students in each term of study.Informants cited information about PBT courses, including expectations for learning and evaluation.
Program HandbooksThese handbooks are a compilation of information from faculty, different offices on campus, and some profession-specific content. They are updated annually and written for students to provide general information about the programs.Informants indicated that disclosure of disability, including personal health information, is not a requirement in the programs. This information is in the program handbooks.
University’s Accommodation PolicyThe accommodation policy is written for the university community. It outlines the general accommodation process.Informants discussed retroactive accommodations, which were added to the university’s accommodation policy in its most recent updated version.

Additional texts were identified by 2 informants (educators) who had specific gatekeeping roles in the accommodation process. However, to ensure anonymity, their reflections were combined with that of all the educators without identifying and analyzing the specific role of the texts they mentioned. We recognize the limitations of not including these text-action-text sequences, and refer to the study as being informed by institutional ethnography.

The Problematic

The problematic in institutional ethnography is the knowledge of the standpoint sample of being there in opposition to the authorized knowing of their experience.23 Educators implemented disability-related accommodations as indicated in the “authorized knowing” inscribed in students’ accommodation plans. Often the process was smooth, particularly in courses that focus on theory, evidence, foundational knowledge, and healthcare/social systems. However, educators struggled with some accommodations that they believed prevented students from demonstrating the requirements of the course, program, and/or profession.

The occupational therapy and physiotherapy programs are underpinned by the philosophy of problem-based learning (PBL). As described in term handbooks, within the small group Problem-Based Tutorials (PBT) course, students learn collaboratively through group discussion of clinical scenarios while the tutor facilitates the learning process. Several educators, namely tutors and PBT coordinators, expressed concerns when students had accommodations that included leaving the group, not speaking during tutorial time, or meeting with the tutor one on one outside of PBT time. They reported that the group experience is not strictly about the content being learned but also the learning process. Term handbooks indicated that tutorials include designated time to give and receive feedback on content and process at an individual and group level. This feedback is part of a formative and summative group evaluation process. One educator, Meghna, described her challenges with an accommodation affecting this group experience:

“…the student wants an opportunity to meet one on one with the tutor to discuss performance…what’s in the group is discussed in the group, including individual students’ performance…students can feel, if they are struggling, can feel like they are being picked on but then is that a disability-related accommodation or is that…‘I don’t want to be centered out’?…I do think there are some requirements to be in a professional preparation program…and in our program, part of it is you have to be prepared to work in small groups and be evaluated on your small group performance.” Meghna

As identified in term handbooks, one goal of PBT courses is to build skills that prepare students for professional practice in healthcare teams. Occupational therapists and physiotherapists collaborate on patient care plans and require process skills to work effectively on teams. Thus, the students’ group process skills, such as communication, are evaluated. Some educators reported feeling challenged to evaluate students who are accommodated in such a way that they are not demonstrating the skills in the manner intended (ie, meeting the tutor separately rather than communicating issues in the group context). As a tutor, Meenal was concerned about whether foundational skills could be accommodated:

“how much are you able to…how much can the school accommodate someone who does not have the social…skill set, communication skill set, to be able to work in a field that demands that? How much accommodation can be made for that?” Meenal

Term handbooks are written by educators teaching courses, including PBT, in the term. The philosophy of PBL is described along with how it is implemented in the course/program.

In PBT, some educators explained that some student behaviors were perceived to be unprofessional, unless the student chose to disclose a disability-related reason for their behavior. For example, fidgeting, absences, taking additional breaks and wearing sunglasses were cited by a few educators as unprofessional behaviors presented in tutorial. For the tutor and peers to understand, the student disclosed that their behaviors were either part of their disability or how they managed their disability. While program handbooks indicate that students are not required to share any personal information in the programs, several educators stated that disclosure often occurs in PBT.

Courses that focused on clinical skills raised concerns for the educators. Some educators did not support accommodations for certain clinical skills exams, such as the Objective Structured Clinical Examination (OSCE), including accommodations for breaks, extra time, completing the exam alone or using a proxy. They explained that they are attempting to examine students on their ability to problem-solve, adapt to changing environments, and be efficient and effective in a safe manner. Ishar explained that these skills are being evaluated because they are required for the licensing exam and clinical practice:

“…it’s because it’s a professional program where there’s a practical exam upon completion which dictates whether or not you can practice as a physiotherapist and there are no accommodations provided in those situations. I think we’re following suit…it’s not really setting them up for success as physiotherapists being that they need to go and do these exams and use physical skills as part of their practice.” Ishar

Ultimately, the main tension among educators was that they believed they were educating and evaluating students to be qualified professionals providing safe and effective occupational therapy and physiotherapy services to the public. This was in contrast to messaging received from campus office staff that their responsibility was strictly to provide students with an education in occupational therapy or physiotherapy:

“…what comes back is ‘your job is only to make…or to give students an education. Your job is not to create professionals.’ And I will argue back saying ‘no, my job is to create professionals, that’s what we’re all about.’ But [Disability Services] will just say, ‘no you are just giving them a degree.’ So, they don’t see why we can’t implement these different things.” Myria

Thus, the university is organized to focus primarily on students and the supports they need to learn and demonstrate an understanding of subject matter and associated skills. Whereas educators are focused on the outcomes of an education in occupational therapy and physiotherapy, which is the ability to provide rehabilitation services to clients. There are 2 ruling relations that explain how educators in professional programs come to know this problematic: the focus on students in the education context and the focus on clients in the professional and healthcare/social system contexts. We will explain how each is governing the work of educators and how, in combination, they are creating tensions in the educators’ work.

Focus on Students

Educators identified offices on the university campus designed to support students, such as Disability Services where accommodation plans are developed and Health Services where students can access medical/health care. Other offices they cited support the broader university community, such as the Human Rights office and the office of the Ombudsperson. However, some educators explained that in their accommodation experience, the staff from these offices advocated for students, rather than attempting to understand and resolve issues collaboratively with educators. Myria described her experiences:

“…there are some students who do not respond to what the program has to say but they will respond to what [Disability Services] has to say. I’ve always felt in this particular context, that it’s an us versus them. So, it’s [Disability Services] and the student fighting the program…that’s the perception whereas it’s like why can’t we all just work together here? I think perhaps [Disability Services] feels the program doesn’t have the students’ best interest at heart. I don’t know, perhaps. Maybe it’s that, you know, I’m going to fight for disabilities and you don’t understand disabilities even though we are rehab professionals.” Myria

“…the [Office of the Ombudsperson] has this big sign that says, ‘Problem with evaluation? Contact us.’…That’s not a neutral office.” Myria

The perceived lack of collaboration set up a challenging context for educators to engage in accommodation work. While they appreciated the importance of supports for students, they did not always agree with the accommodations provided by Disability Services. Educators described complaints and appeals initiated by students with disability-related accommodations that lasted for several years and involved stress and additional work. These “cautionary tales” resulted in educators feeling pressured to accommodate students. They expressed concern about the potential consequences of students filing human rights complaints or academic appeals. Nisha explained their thought process:

“I don’t know if that’s good or bad but often my yardstick that guides my decision making is what would happen on appeal…and is there a way to mitigate the need for an appeal and just save everybody time.” Nisha

The university’s accommodation policy includes retroactive accommodations, which are granted after a course is finished. Some educators indicated that in these instances, students did not have disability-related accommodations before or during the course. Rather, after the student failed a course, they received a retroactive accommodation whereby the failure was removed from their transcript. In their interviews, educators understood students’ right to privacy and had not requested more information; however, they were surprised at being shut out of the process. Anya described her experience of retroactive accommodations:

“…there have been those occasions over the years where my grades have been overturned…where students have been permitted to pass where I felt very strongly that they should not, that they should fail…and situations with these retroactive accommodations where they were granted and…I just felt like at some level, “don’t you want to pay attention to the person who is the educator, who is experienced and has taught…and evaluated hundreds of students?” Anya

While identified as infrequent, educators’ experiences of retroactive accommodations illustrated for them the privileging of the focus on students in the university. Educators appreciated the importance of supporting students and noted that recently, they have increased their focus on student mental and physical health and well-being, through eliminating unnecessary barriers to education. Most educators reported implementing universal design in learning (UDL) principles such as lengthening the duration of the term while maintaining the same workload for students and giving all students more time to complete written exams when efficiency is not being evaluated. Their rationale was to improve students’ experiences in the programs, recognizing that disability-related accommodations would still be needed. Abha explained the changes with the most recent cohort:

“By reorganizing your exam week to have double time for everyone and having 24 hours between exams…we’ve tried to apply [UDL] to all of our exams. So rather than…before we might have had an exam in the morning and an exam in the afternoon, that was one hour each. Now, we give everybody 2 hours for each of those exams and we split those exams over different days…that’s accommodated in this past cohort, I think almost everybody…” Abha

The educators who discussed implementing UDL, reported it as a positive experience. However, in addition to their responsibilities to students, educators indicated that they felt a responsibility to their professions and saw the programs as bridges to students serving the public where the focus is on clients.

Focus on Clients

For decades, rehabilitation professionals have been stating that their professions are underpinned by a client-centered philosophy where the client’s needs and goals guide therapists’ actions.28 In their interviews, educators explained that students are not their clients and that there is no text from the rehabilitation field helping them navigate the accommodation process. However, they draw on their professional skills in this process. Myria, for example, shared how she matched student accommodations to academic requirements:

“…what I’m doing at the time is just trying to problem-solve in my head. So, there’s no…there’s no roadmap or there’s no anything; I’m using my…my best professional judgement in situations in trying to support the student.” Myria

The educators’ professional judgement included their understanding of rehabilitation practice as registered occupational therapists and physiotherapists and having knowledge of their responsibilities to the public. They provided examples of how their practice experience guided them in implementing students’ accommodations that were novel. For example, Karam described a situation where a student’s accommodation involved the student developing their own memory aid and then sending it to the educator for approval prior to each exam. When they reviewed the aid, Karam noted:

“…it’s somewhat probably my skills as an OT knowing what is doing something too much for somebody [versus] what is a cue to help a task happen…and I made that decision based on how you remediate tasks…” Karam

Karam appeared to be drawing on the skills employed by occupational therapists in practice to discern the appropriateness of the student’s memory aid in writing the course exam. Some educators also described how they drew on practice experience to determine temporary accommodations. In these situations, the student did not have a formal accommodation plan from Disability Services; however, they required accommodations immediately. The educator, in the role of course coordinator, determined how best to accommodate the student, while maximizing their engagement in the learning process. Dhruv provided an example from their clinical skills course:

“…if a student has a brace on [their] leg, [they’re] not able to provide the support that a patient would need for a transfer, a patient with stroke or a patient with, you know, ataxia, but they could do manual skills for upper extremities, for example, right? So, it’s all…depending on the risk…” Dhruv

Addressing risk and safety were prominent in the interviews with educators who coordinate clinical skills courses. Educators felt that part of their role was ensuring all students were safe to engage in clinical learning and enter placement/practice. They did not indicate that students with disabilities are more likely to be unsafe, only that it in some situations such as the one described by Dhruv, it was an important consideration.

Part of the accommodation work of educators in the occupational therapy and physiotherapy programs is grappling with the disconnect they witnessed between the student context at the university with their understanding of the clinical practice context. Anya articulates this concern:

“…it’s a very stressful job. So, you’re…you’re going to have to be able to cope with multiple demands and time pressures and sad situations and all of the kinds of things that sometimes the students have difficulty dealing with…If you are struggling this much with the program, are you actually going to be able to be in this profession?” Anya

Anya and other educators identified that students’ future employment situations are beyond the scope of their role. Educators stated that while there are a variety of ways to practice in the professions, they were unsettled by the prospect that some students may struggle in practice, particularly since they understood the programs to be bridges to practice.

Discussion

The disjuncture in the literature between the professional philosophy of inclusion and participation versus the challenges expressed by educators and the ableism identified by researchers, was not the problematic that emerged in the data. The problematic experienced by educators in this study is the tension between the university structures that focus on students and the professional and health care/social system structures that focus on clients. In this institutional ethnography informed study, educators expressed that student interests are privileged while client interests are subordinated by the university in the accommodation process. Their experiences with student appeals and complaints, lack of collaboration from campus offices, and having their course grades overturned demonstrate the activation of students’ interests.21,23 For the purposes of explicating the ruling relations and how they organize educators, we described the ruling relations individually. Separately, these ruling relations appear to be not only important but necessary.

University staff and faculty have a mandate to focus on students and their success in academia. Professionals have a mandate to focus on clients and their health and well-being. However, when both sets of ruling relations are brought together in the context of professional rehabilitation programs within a university, their appears to be a competition of priorities, resulting in a dichotomy where the interests of one or the other is privileged. We argue, however, that the existence of the dichotomy needs to be challenged. There are discourses within rehabilitation practice that focus on both clients and students, such as safety. Educators in professional programs teach students to ensure the safety of both their clients and themselves during service delivery. To serve the public, rehabilitation professions require a healthy and diverse workforce, which means that greater attention is needed to recognize situations where educators struggle with competing priorities and to build bridges between these ruling relations that value both clients and students.

Schrewe and Frost29 discuss a tension between the need for diversity among medical professionals and the standardization of medicine, including the essential requirements of being a physician. They state that separately, these issues make sense, but together, they are in conflict. Schrewe and Frost suggest developing an approach that explores the essence of the profession and holds the space for both individuality and professional standardization. Rehabilitation professionals also need to come together and clarify the essential requirements of each profession while upholding the values of inclusion and diversity.

Academic accommodations remove barriers for students so they may engage in the learning process while maintaining academic standards. These academic standards are non-modifiable essential requirements of the program.30 Differentiating essential and non-essential requirements is challenging in health and human services professions.13 Some professional programs identify the profession’s competencies as the essential requirements.30 Occupational therapy and physiotherapy programs in Canada have not explicitly done this; however, even if they do, competencies tend to be broad, encompassing a wide range of practice settings, professional roles, and client populations. Such variation and breadth present challenges in defining essential requirements.

For example, competence in “communication” can be an essential requirement; however, this competency requires vastly different skills from a professional working with a client who is disoriented and confused versus engaging with a client experiencing suicidal ideation. It is unclear which skills are essential for practice, and skills courses were a major area of concern for informants in this study. There needs to be clarity on the minimum expectations for entry-level occupational therapists and physiotherapists to ensure that unnecessary barriers are removed for students with disabilities and to support educators who avoid raising concerns about accommodations due to fear of appeals and complaints.

Educators need to consider how they make individual decisions about disability-related accommodations. Very few of the educators in this study cited any texts that served to assist them in determining which accommodations removed barriers while also upholding essential requirements. Thus, educators relied on their own understanding and experience of professional requirements to make decisions about accommodations. However, educators have not experienced all the ways in which the professions can be practiced. Not experiencing or seeing certain disability-related accommodations in practice does preclude their existence or the potential for their existence. There may be disability-related accommodations that have not yet been imagined, possibly because current practice may be operating on pre-existing systemic ableism. These systems must be interrogated, beginning with the texts that are written by educators (ie, term and program handbooks). Educators need to be open to possibilities that facilitate the contributions that occupational therapists or physiotherapists with disabilities can make to advance the professions.31

In their interview, for example, Ishar states that there are no accommodations for the practical licensing exam; however, a review of the exam application and information indicates that alternative accommodations are possible on a case-by-case basis.32 Perhaps the availability of accommodations is not well-known or the access to accommodations is difficult, but the misconception that these do not exist can have a negative impact on students who require accommodations in order to demonstrate their knowledge and skills in their programs and on licensing exams. Educators can improve the accommodation process by knowing the accommodations that exist, considering others that could be possible, and advocating with students for systemic changes in practice where needed.

Another area for change is clarifying when or if disclosure of disability-related needs and accommodations is required in professional programs and practice. In PBT courses, content and process were relevant to professional practice, thereby making the unique structure of the course (ie, small group self-directed learning) essential to the programs. However, findings indicate that disclosure by students with disabilities in PBT was required for students to avoid receiving feedback that their presentation was unprofessional in the course. This feedback is significant because students are evaluated on professionalism in PBT. It seems that the implicit requirement to disclose is in conflict with the student’s right to privacy.

Jarus and colleagues3 interviewed clients and caregivers about their perceptions of receiving health and human services from disabled professionals. Their findings indicate that clients and caregivers felt disclosure was appropriate when relevant; for example, when the professional’s behavior could be perceived as unprofessional. The issue of disclosure may be nuanced in practice, such that there may be instances when it is more or less relevant to share personal information. However, there is also a need to revisit the definition of professionalism and whether it is underpinned by normative assumptions. There may be a need to consider more broad and expansive understandings where disclosure would be less of an issue.

Rigor

Members of the research team ensured the alignment of institutional ethnography theory and methods with the study design.22 The overall argument about conflicting ruling relations in the process of accommodating students with disabilities, is grounded in analytic points from the data. In the description of results, we explicated the connections between the overall argument, analytic points, and data gathered (ie, quotations). With respect to transferability, we have provided a detailed description of the local context. Institutional ethnography has a “generalized and generalizing nature,” which examines social relations that apply beyond the local context.19(p42) In other words, since all accredited occupational therapy and physiotherapy programs in Canada are delivered via post-secondary university campuses and each profession has an accrediting organization, regulatory organizations and an organization that administers the professional licensing exam, the educators in other programs may also experience tensions due to the ruling relations described in this study.

Limitations

This study was limited by the lack of data from students. While the standpoint sample involved educators, students are key stakeholders in the accommodation process and may have added second-level data to understanding the accommodation process. Further, second-level data was collected with the university as the “institution”; however, findings indicate that professional organizations also influence the accommodation of students with disabilities in rehabilitation programs. Thus, recruiting informants from professional and regulatory organizations may have added insights related to ruling relations that focus on clients.

Conclusion

Dorothy Smith’s19 institutional ethnography methodology provided a means to explore the accommodation work of educators in professional rehabilitation programs. While providing disability-related accommodations, educators in this study were influenced by 2 ruling relations: 1) the focus on students in the university context; and 2) the focus on clients in the professional and healthcare/social system context. This created a false dichotomy where educators perceived that only one set of interests could prevail. Educators were not guided by a clear understanding of the essential requirements of their professions. Rather, they invoked their knowledge and experience of the rehabilitation professions. However, rehabilitation practice may be rooted in systemic bias that has yet to be unearthed and addressed. To prepare students in professional programs to provide services to the public, students need to be supported in their own health and well-being. This means knowing which, if any, parts of the professions and programs cannot be accommodated, remaining open to unimagined possibilities for accommodation, and working with students to bridge the focus on students with the focus on clients.

Acknowledgements

We would like to thank the educators for openly sharing the details of their work in the accommodation process and Dr. Elizabeth Marquis for sharing her expertise throughout the research process.

References

  1. Easterbrook A, Bulk LY, Jarus T, et al. University gatekeepers’ use of the rhetoric of citizenship to relegate the status of students with disabilities in Canada. Disabil Soc. 2019;34(1):1-23. doi:10.1080/09687599.2018.1505603
  2. Hargreaves J, Walker L. Preparing disabled students for professional practice: managing risk through a principles-based approach. J Adv Nurs. 2014;70(8):1748-1757. doi:10.1111/jan.12368
  3. Jarus T, Bezati R, Trivett S, et al. Professionalism and disabled clinicians: the client’s perspective. Disabil Soc. 2020;35(7):1085-1102. doi:10.1080/09687599.2019.1669436
  4. Bevan J. Disabled occupational therapists – asset, liability … or ‘watering down’ the profession? Disabil Soc. 2014;29(4):583-596. doi:10.1080/09687599.2013.831747
  5. Easterbrook A, Bulk L, Ghanouni P, et al. The legitimization process of students with disabilities in Health and Human Service educational programs in Canada. Disabil Soc. 2015;30(10):1505-1520. doi:10.1080/09687599.2015.1108183
  6. Jung B, Baptiste S, Dhillon S, Kravchenko T, Stewart D, Vanderkaay S. The experience of student occupational therapists with disabilities in Canadian universities. Int J High Educ. 2014;3(1):146-154. doi:10.5430/ijhe.v3n1p146
  7. Marquis E, Jung B, Fudge-schormans A, et al. creating, resisting or neglecting change : exploring the complexities of accessible education for students with disabilities. Can J Scholarsh Teach Learn. 2012;3(2):1-18.
  8. Velde BP, Chapin MH, Wittman PP. Working around “it”: the experience of occupational therapy students with a disability. J Allied Health. 2005;34(2):83-89.
  9. Swenor B, Meeks LM. Disability inclusion – moving beyond mission statements. N Engl J Med. 2019;380(22):2089-2091. doi:10.1056/nejmp1901233
  10. Newsham KR. Disability law and health care education. J Allied Health. 2008;37(2):110-115.
  11. Stier J, Barker D, Campbell-Rempel MA. Student accommodations in occupational therapy university programs: requirements, present environment and trends. Occup Ther Now. 2015;17(3):16-18.
  12. Ingram D, Mohr T, Mabey R. Testing accommodations: implications for physical therapy educators and students. J Phys Ther Educ. 2015;29(1):10-18.
  13. Sharby N, Roush SE. Analytical decision-making model for addressing the needs of allied health students with disabilities. J Allied Health. 2009;38(1):54-62.
  14. Teherani A, Papadakis MA. Clinical performance of medical students with protected disabilities. JAMA. 2013;310(21):2309-2311. doi:10.1001/jama.2013.283198
  15. Bulk LY, Easterbrook A, Roberts E, et al. ‘We are not anything alike’: marginalization of health professionals with disabilities. Disabil Soc. 2017;32(5):615-634. doi:10.1080/09687599.2017.1308247
  16. World Health Organization. Rehabilitation Competency Framework. Geneva; 2020. Available at: https://www.who.int/teams/noncommunicable-diseases/sensory-functions-disability-and-rehabilitation/rehabilitation-competency-framework. Accessed June 14, 2021.
  17. Jung B, Salvatori P, Tremblay M, Baptiste S, Sinclair K. Inclusive occupational therapy education: an international perspective. World Fed Occup Ther Bull. 2008;57:33-42. doi:10.1179/otb.2008.57.1.007
  18. Adams S, Carryer J, Wilkinson J. Institutional ethnography: an emerging approach for health and nursing research. Nurs Prax New Zeal. 2015;31(1):18-26.
  19. Smith DE. Institutional Ethnography: A Sociology for People. Lanham, MD: Altamira Press; 2005.
  20. Smith GW, Mykhalovskiy E, Weatherbee D. A Research Proposal. In: Smith DE, ed. Institutional Ethnography as Practice. Oxford, UK: Rowman & Littlefield Publishers; 2006:165-180.
  21. Rankin J. Conducting analysis in institutional ethnography: guidance and cautions. Int J Qual Methods. 2017;16(1):1-11. doi:10.1177/1609406917734472
  22. Townsend E. Good Intensions Overruled: A Critique of Empowerment in the Routine Organization of Mental Health Services. Toronto, ON: University of Toronto Press; 1998.
  23. Rankin J. Conducting analysis in institutional ethnography: analytical work prior to commencing data collection. Int J Qual Methods. 2017;16(1):1-9. doi:10.1177/1609406917734484
  24. Campbell M, Gregor F. Mapping Social Relations: A Primer in Doing Institutional Ethnography. Aurora, ON: Garamond Press; 2002.
  25. Smith DE. Making sense of what people do: a sociological perspective. J Occup Sci. 2003;10(1):61-64. doi:10.1080/14427591.2003.9686512
  26. DeVault ML, McCoy L. Institutional ethnography: Using interviews to investigate ruling relations. In: Smith DE, ed. Institutional Ethnography as Practice. Oxford, UK: Rowman & Littlefield Publishers; 2006:15-44.
  27. Smith DE. Incorporating texts into ethnographic practice. In: Smith DE, ed. Institutional Ethnography as Practice. Oxford, UK: Rowman & Littlefield Publishers; 2006:65-87.
  28. Whalley Hammell K. Perspectives on Disability and Rehabilitation: Contesting Assumptions; Challenging Practice. Philadelphia: Elsevier Ltd; 2006.
  29. Schrewe B, Frost H. Finding potential in balance: navigating the competing discourses of diversity and standardization. Acad Med. 2012;87(11):1479. doi:10.1097/ACM.0b013e31826d56ca
  30. Roberts B, Mohler CE, Levy-Pinto D, Nieder C, Duffett EM, Sukhai MA. Defining a New Culture: Examination of Essential Requirements in Academic Disciplines and Graduate Programs. 2014. Available at: http://www.cags.ca/documents/publications/3rdparty/Discussion paper Essential Requirements FINAL 2014-09-22.pdf. Accessed January 18, 2017.
  31. Hammell KW, Jarus T, Bulk LY, Collins B, Grenier ML, Mahipaul S. Letter to the editor. Can J Occup Ther. 2021;88(4):279-282. doi:10.1177/00084174211045857
  32. Canadian Alliance of Physiotherapy Regulators. Alternative accommodations. Available at: https://www.alliancept.org/taking-the-exam/exam-application-information/alternative-accommodations/. Published 2019. Accessed August 1, 2021.

About the Author(s)

Shaminder Dhillon, PhD candidate

Shaminder Dhillon, PhD candidate, is an Occupational Therapist and Assistant Professor in the School of Rehabilitation Science at McMaster University. Her research interests include professional issues such as advocacy and transition to practice for internationally-educated occupational therapists. Her dissertation explores the process of accommodating students with disabilities through analysis of texts and interviews with both university-based and field-based educators. The humanities offer important insights and tools to inform understanding and the design of this work.

Sandra Moll, PhD

Sandra Moll, PhD is an Occupational Therapist and Associate Professor in the School of Rehabilitation Science at McMaster University. She has over three decades of experience as an educator and researcher, with a primary focus on mental health innovation in research and clinical practice. Drawing upon a commitment to co-design approaches and participatory methods, she leads the McMaster Co-design Hub for structurally vulnerable communities, and is the principal investigator for two national mobile health projects designed to promote early intervention and peer support for frontline healthcare workers and for First Responders.

Magda Stroińska, MA, PhD

Magda Stroińska, MA, PhD is a Professor of Linguistics and German at McMaster University. Her major areas of research and publication include sociolinguistics, analysis of discourse, and cross-cultural issues in pragmatics and cognition, in particular linguistic representations of culture and social relationships, cultural stereotyping, language and politics, propaganda and language manipulation in hate speech, the issues of identity in exile, aging, disability, and bilingualism, as well as language and psychological trauma.

Patricia Solomon, PhD

Patricia Solomon, PhD is Professor Emerita in the School of Rehabilitation Sciences at McMaster University. Her teaching philosophy promotes an interdisciplinary approach, incorporating the humanities, to promote communication, empathy, and compassion in health care.

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Doing Healthcare Research Differently: An Introduction to SocioHealthLab’s Special Video Series, Part 1 https://jhrehabredesign.ecdsdev.org/2022/04/25/doing-healthcare-research-differently-an-introduction-to-sociohealthlabs-special-series-part-1/ Mon, 25 Apr 2022 04:00:26 +0000 https://jhrehabredesign.ecdsdev.org/?p=8461

Doing Healthcare Research Differently: An Introduction to SocioHealthLab’s Special Video Series, Part 1

Rebecca E. Olson, PhD, BA (Hons) & Jenny Setchell, PhD, BSc (Pty) & Tim Barlott, PhD, MScRS, BScOT & Karime Mescouto, BPhty (Hons), MSc. & Ramona Boodoosingh, PhD, MSc, GradDip, BSc (Chem Mgmt). & Nathalia Costa, PhD, BPhy (Hons) & Nadia Cook, BA (Vis Arts), GradDip (Early Childhood Ed) & Sofia Woods, BA (Dance) & Sarah Bock, BA (Multimedia, Grad Cert (Comp Ed)

Table of Contents

Established in 2019, SocioHealthLab is a research collective of health and social science researchers, practitioners and students from Australia and around the world, striving for healthcare transformation through applied, theory-driven, creative and collaborative socio-cultural research. In short, we come together to challenge each other to do health and healthcare differently.

Through this first of two instalments within our special series with the Journal of Humanities in Rehabilitation, we begin doing health research dissemination differently by telling our story/stories[1] through animation, music, sound and discourse. Our story/stories take many forms: poems on becoming sick (Barlott, 2022)and (in)visible (Boodoosingh, 2022), visual and reflexive narration questioning what it means to be a physiotherapist (Mescouto, 2022) and a performance by creature-clinicians adopting a humanistic approach to treating dragon scale (Setchell et al., 2022)!

Such storytelling is part of becoming. The storytelling found in this special series is part of our becoming. Stories have long been central to how communities teach one another their values, produce theories on how the world works and for reworking one’s place in it. Through stories, we learn how and who to be (Frank, 2007). Through the stories in this first instalment of our special series we begin to teach ourselves and others our values: vulnerability, (more-than)human-centred approaches to care and a deep curiosity in theory’s transformative potentiation.

Visual stories like these can help us to express our emotions, share these emotions and contain them (Frank, 2007). Discomfort – shared through storytelling – holds our collective attention, making the discomfort a less isolating experience, and one with the potential for transformation. Humour is also transformative, allowing us to reflect on our own practices in a less confronting space. In this first of two instalments within our special series, we see sorrow, discomfort and/or humour central to the ebb and flow of each unfolding relational journey.

The videos are designed to be a multi-sensory experience, differing from usual academic forms of expression. They are brief, so put aside a little time, find a quiet space, put on some headphones and join us in our stories.

SocioHealthLab is an inclusive research collective where anyone is welcome to participate in our conversations on health and healthcare. After spending some time with our story/stories in this special series, you may wish to join our the collective. You can find more information about us – including our contact details – on our website: https://shrs.uq.edu.au/research/sociohealthlab .

[1] We use the phrasing ‘story/stories’ purposefully here – because no story is completely original. Familiarity and intertextuality are central to the purposes of storytelling – helping us to recognise ourselves, reflect on who we are, and act accordingly.

(Un)learning: A physiotherapist’s PhD journey

By Karime Mescouto

“Unlearning is about being comfortable with doubt and strangeness (…) creating different ways of being together and considering new vantage points“.

In this video, Karime Mescouto shares how engaging with social and philosophical theories in her PhD prompted her journey of unlearning and critically reflecting on her profession. She uses philosopher Annemarie Mol’s work to shed light on the multiplicity of physiotherapy and question how certain aspects of the profession are continuously prioritised over others. The multiplicity of physiotherapy transforms a fixed and rigid perception of “being a physio” to a fluid and continuous process of “becoming a physio”.

Do you See me

By Ramona Boodoosingh

The intent of this video is to humanize the personal experiences of a patient when interacting with health workers. The internal self-speak may assist health workers to develop a deeper awareness of and reflection on how patients are affected by their environment, non- verbal cues, verbal communication and internal self-doubts.

Power and the Clinic

By Jenny Setchell, Rebecca Olson, Karime Mescouto, Nathalia Costa, Nadia Cook, Sofia Woods, and Sarah Bock

Power weaves its way through everything. In healthcare settings it can derail well-intentioned care and overly impact those experiencing socio-economic or cultural marginalisation. In this video we explore power in the clinic, examining the small and the large ways in which power manifests in a seemingly simple few minutes of clinical time. Power is woven into the fabric of communication between patient and clinician, in the furniture and decorations on the walls, in the institutional policies and procedures. This video is aimed at clinicians who would like to see power more clearly so they can improve care for all patients.

Becoming-sick

By Tim Barlott

This poem centres around the concept of becoming, which comes from the work of Gilles Deleuze and Felix Guattari. Becoming is an asignifying and disruptive process. Processes of becoming involve micropolitical or small-scale movements of power and resistance that generate fissures or cracks, forming lines of escape. These processes can be understood as entering into a closeness or a zone of proximity with something that is ‘other’, in this case entering into proximity with sickness. In this Deleuzio-Guattarian intoxicated poem Tim explores his imperceptible becoming following the surgical removal of a cancerous tumour.

The poem “Becoming-sick” was originally published in the Journal of Autoethnography:

Barlott, T. (2021). Becoming-sick. Journal of Autoethnography2(2), 215-216. https://doi.org/10.1525/joae.2021.2.2.215

References

  1. Barlott, T. (2022). Becoming-sick. Journal of Humanities in Rehabilitation, 9(1). https://vimeo.com/661501435
  2. Boodoosingh, R. (2022). Do you see me? Journal of Humanities in Rehabilitation, 9(1). https://vimeo.com/670797425
  3. Frank, A. W. (2007). Five dramas of illness. Perspectives in Biology and Medicine, 50(3), 379-394. https://doi.org/10.1353/pbm.2007.0027
  4. Mescouto, K. (2022). (Un)learning: A physiotherapist’s PhD journey. Journal of Humanities in Rehabilitation, 9(1). https://vimeo.com/658460593
  5. Setchell, J., Olson, R., Mescouto, K., Costa, N., Cook, N., Woods, S., & Bock, S. (2022). Power and the clinic. Journal of Humanities in Rehabilitation, 9(1). https://vimeo.com/658760898

About the Author(s)

Rebecca E. Olson, PhD, BA (Hons)

Rebecca E. Olson is an Associate Professor in Sociology, University of Queensland. Funded by competitive national grants, her research intersects the sociologies of health and emotion. As a leading innovative qualitative researcher, Olson employs video-based, participatory, reflexive, post-qualitative and post-paradigmatic approaches to inform translational inquiry in healthcare and healthcare education settings. Her recent books include Towards a Sociology of Cancer Caregiving: Time to Feel (Routledge, 2015) and Emotions in Late Modernity (Routledge, 2019, co-edited with Patulny, Bellocchi, Khorana, McKenzie and Peterie). Olson also minored in political theatre and has been a dancer or community dance teacher for most of her life.

Jenny Setchell, PhD, BSc (Pty)

Dr Setchell is Senior Research Fellow, School of Health and Rehabilitation Sciences, University of Queensland, Australia. Research interests include critical perspectives on rehabilitation and physiotherapy, and using post-modern and new-materialist theories to enhance healthcare equity. Dr Setchell has received numerous grants and awards, including a prestigious NHMRC Fellowship. They have 20 years of diverse clinical physiotherapy experience, primarily in the musculoskeletal sub-discipline. Dr Setchell is co-founder of the Critical Physiotherapy Network, an international network of physiotherapists across 30+ countries working toward more socio-politically conscious rehabilitation. Dr Setchell has been an acrobat and a human rights worker.

Tim Barlott, PhD, MScRS, BScOT

Tim Barlott, PhD, MSc, Grad Cert (Community-Based Participatory Research) BScOT, is an Assistant Professor in the Department of Occupational Therapy at the University of Alberta and Co-Director of the SocioHealthLab at The University of Queensland (UQ), Australia. Tim’s research is at the interface of health service delivery and the sociology of health, interrogating the socio-political aspects of everyday life and pursuing affirmative/transformative possibilities. In particular, Tim is interested in allyship and the value of freely-given relationships in community mental health, considered through post-modern and new materialist theoretical perspectives. Using community-based approaches, Tim’s research is built on collaborative relationships with community partners and the co-construction of research processes. Tim’s research is published across sociology, rehabilitation, occupational science, occupational therapy, philosophy, and qualitative methods. Tim has over 15 years of experience as a community practitioner (occupational therapist, addictions counsellor, and youth worker), educator, and participatory researcher in Canada, Australia, and internationally.

Karime Mescouto, BPhty (Hons), MSc.

Karime Mescouto is a physiotherapist and a PhD candidate at the University of Queensland, Australia. Her doctoral research is interested in enhancing low-back-pain healthcare delivery by looking critically at the biopsychosocial model of health. Her research uses a variety of qualitative methodologies to challenge taken-for-granted aspects in the care of people with low back pain. She holds a master’s degree in Rehabilitation Science from UFRN, Brazil, and a Graduate Certificate in Physiotherapy from Curtin University, Australia. She is a passionate physiotherapist with an aspiration of contributing to best-practice care for people with chronic musculoskeletal pain.

Ramona Boodoosingh, PhD, MSc, GradDip, BSc (Chem Mgmt).

Ramona Boodoosingh is a senior lecturer at the School of Nursing, Faculty of Health Science, at the National University of Samoa. She holds a PhD in Development Studies, and a master’s degree in Environment Health. She hails from Trinidad and Tobago, and has been residing in Samoa for the last five years. Her research interests include health literacy, food security, elder care, gender issues, and academic inequality. Building on her numerous research contributions, she has recently developed a keen interest in health communications, understanding food choice, and pelvic organ dysfunction.

Nathalia Costa, PhD, BPhy (Hons)

Nathalia Costa is a Postdoctoral Research Fellow at the School of Health and Rehabilitation Sciences, University of Queensland, and at Sydney School of Public Health, The University of Sydney, Australia. She has expertise in musculoskeletal health, with a focus on low back pain. Dr Costa is particularly interested in translational projects that involve collaboration with key stakeholders and have real-world applicability. Her research spans from factors that impact on low back pain trajectories to individual, organizational and system factors that create barriers to, and facilitators for, care that is person-centred and equitable.

Sofia Woods, BA (Dance)

Sofia Woods is Product Design Director at Xero. She has been a User Experience and Product Designer for 12 years. She designs, creates and brings to life digital experiences for Government, Health, Travel, Environment and Financial Services. Using a Human Centred Design approach, she examines the key problems people face when using online products or services, and uses a series of methods to ideate, test and prototype digital solutions. She regularly works across health and academia, bringing Human Centred Design to help focus research outcomes and inform perspectives to make them more ‘human’ focused.

Sarah Bock, BA (Multimedia, Grad Cert (Comp Ed)

Sarah Bock is Director of eLearn Australia. She is an experienced educational designer and developer with a demonstrated history of working in the e-learning industry. She is skilled in instructional design, mobile applications and web development and is passionate about collaborating with others in the social justice and/or health space. Sarah has worked across a wide range of educational and community sectors. She has collaborated closely with Aboriginal people on a range of projects to support Australian Indigenous languages, including the Rumbalpuy Dhäwu medical dictionary and the CommDoc apps intended to culturally enhance interactions between healthcare workers and Aboriginal patients.

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A Reorientation of Belief: Considerations for Increasing the Recruitment of Black Students Into Canadian Physiotherapy Programs https://jhrehabredesign.ecdsdev.org/2021/11/05/a-reorientation-of-belief-considerations-for-increasing-the-recruitment-of-black-students-into-canadian-physiotherapy-programs/ Fri, 05 Nov 2021 04:03:35 +0000 https://jhrehabredesign.ecdsdev.org/?p=8015

A Reorientation of Belief: Considerations for Increasing the Recruitment of Black Students Into Canadian Physiotherapy Programs

Paulina Wegrzyn, MScPT & Celina Evans, MScPT & Gina Janczyn, MScPT & Jasline Judge, MScPT & Remi Lu, MScPT & Rahim Manji, MScPT & Julia Gray, PhD & Meredith Smith, MScPT & Stephanie Nixon, PhD

Table of Contents

Racism, and anti-Black racism in particular, are structures in society that are infused within institutions, including higher education and healthcare. One result of these systemic forces is the underrepresentation of Black students in clinical training programs, including physiotherapy (PT) in Canada. Having a healthcare workforce whose diversity reflects that of the population is essential for mitigating health inequities. Guided by the work of cultural theorist Sara Ahmed, and critical race scholar Camara Phyllis Jones, we explore the perspectives of various experts regarding barriers to and opportunities for increasing the recruitment of Black students into PT programs in Canada. We conducted this qualitative study using semi-structured interviews. Participants included seven Black physiotherapists, one Black PT student, and two university staff members responsible for recruiting Black students into clinical training programs. Data were analyzed using the DEPICT framework and engaging the theories of Ahmed and Jones. Participants discussed how the field of physiotherapy is oriented around whiteness, which serves to exclude people who are Black. Three themes spoke to this interrelationship: PT as a white space; the white orientation of PT limits Black people; and co-creating an inclusive PT profession. We close by inviting those in the field of PT, including in higher education, to unlearn inherited processes, and engage with humility, reflexivity, and vulnerability, in order to fuel material change. We suggest how the field might reorient itself to actively resist structural racism and ensure more equitable physiotherapy education and care.

Introduction

There is growing recognition that structural racism, and anti-Black racism in particular, infuse societal institutions in North America, including higher education and healthcare.1-3 The impact of these systems of inequality is evidenced in a number of ways, including the underrepresentation of Black students and the overrepresentation of white students in clinical training programs. Scholarship analyzing racism is at a nascent stage in the rehabilitation sciences,4-6 and in physiotherapy (PT) in particular.7,8 In contrast, there is increasing scholarship in cultural studies and critical race studies that attends to the ways that structures of power, including institutional structures in higher education, serve to reproduce existing inequities.9-11 The intention of this article is to draw upon critical scholarship from these fields to consider the underrepresentation of Black students in PT programs in Canada.

We are an interdisciplinary research team, including six recent physiotherapy graduates who identify as East Asian (RL), South Asian (JJ), Indo-Canadian (RM), multi-racial (CE), and white (GJ, PW); and three advisors: one Black physiotherapy clinician educator (MS); one white critical physiotherapy researcher (SN); and one white health humanities and performance studies scholar (JG). We come from a range of geographical locations across Canada, including urban and rural settings, and identify with a range of communities of difference.

We recognize that the ideas discussed in this article may be self-evident to some Black, Indigenous, and other racialized readers. Our aim is not to harbor long-known experiences of racialized readers, nor to suggest we have discovered anew such experiences within PT, which have been researched and discussed at length in other fields within higher education.12-15 Rather, our aim is to contribute to a growing body of critical scholarship on racism in the context of PT, which is woefully needed. As such, while our long-term aim as interdisciplinary researchers and scholars is to open up discussions within a multi-racial readership, with this particular article we assume a PT audience that is disproportionately composed of people who are white.

In this article, we share the results of a qualitative research study that illuminates ways that the field of physiotherapy ‘orients’ itself as white, which excludes Black and other racialized practitioners.9 Our paper unfolds thus:

First, we explicate our conceptual framework rooted in cultural studies and critical race theory, with particular focus on the scholarship of Sara Ahmed9 and Camara Jones.16,17

Next, we provide a summation of literature related to structural racism in social institutions—including healthcare, rehabilitation, and higher education—and describe our study design. Following this, we analyze how the field of physiotherapy is currently oriented to and around whiteness, and how Black people, including Black students, are routinely made to feel different because of their race, or are not included at all.

Three Themes

This work is organized into three themes: (1) PT as a white space; (2) white orientation of PT limits how Black people enter and move within the field; and (3) co-creating an inclusive PT profession. Building on these insights, we suggest how the field might ‘reorient’ itself to actively resist structural racism and ensure more equitable physiotherapy education and care. We close by inviting those working in the field of PT, including in higher education, to unlearn inherited processes and ways of doing that have informed current structures of the field of PT, and to engage with humility, reflexivity, and vulnerability, in order to fuel material change.

Our Conceptual Framework

Race is a social construct that was created historically to justify the subordination of people defined as non-white in order to advance social and economic interests of people defined as white, including enslavement and colonization.10,11,18 There is no biological basis for race.16,19 Over time, the structure of racism has become deeply entrenched and normalized throughout societal institutions, including education and healthcare. Anti-Black racism is a form of racism that targets people who are Black, and which includes a history of slavery in Canada, forced resettlements, immigration practices, violence at the hands of police, and specific laws that have led to a lack of equitable access, opportunities, and outcomes for Black people.20 The presence of racism (and anti-Black racism) can seem invisible to some because people are socialized to view it as normal—particularly, those who benefit from this structure.9,21 In this study, we use the term racialized to emphasize that race is a socially-constructed concept created to define positions of superiority and inferiority. Furthermore, we draw on the work of cultural theorist Sara Ahmed and critical race scholar and public-health physician Camara Jones to understand racism as institutionalized and personally mediated.9,16,17

Institutionalized racism occurs at a structural level and can be understood as “differential access [of individuals] to the goods, services, and opportunities of society by race,”16(p1212) which often manifests as an inherited disadvantage. Ahmed’s thinking around the interrelationship between individual bodies and broader social spaces is useful here.9 According to Ahmed, the social world must be agreed upon and structured by people who inhabit it. People within particular social spaces must be “oriented” or in line with each other, in order to have access to things within the space. Extending this to race and Blackness, Ahmed discusses how reaching for particular “things” (eg, goods, services, and opportunities) can be “stopped” (eg, through exclusion) for Black people within “white spaces.”9(p111)  A “white [social] world” is ready for only certain kinds of bodies and this world is “inherited,”9(p111) so that “to inhabit a white world with a Black body” holds the potential to be “disorienting” (eg, unwelcoming within the dominant orientation).9(p129) Formal institutions, such as universities, are oriented toward whiteness, which might seem invisible or normal to white people; however, racialized individuals might feel “uncomfortable and feel exposed, visible, and different.”9(p133) This institutionalized racism, where spaces are structured in particular ways to ensure certain (white) people can access goods, services, and opportunities while hindering other (racialized, Black) people, additionally makes prejudice and discrimination seem normal.

Personally mediated racism can be understood as both prejudice, meaning “differential assumptions about the abilities, motives, and intentions of others according to their race” and discrimination, meaning “differential actions toward others according to their race [emphasis added].”16(p1212-1213) This form of racism is often understood as what “racism” is, focused only on interactions between people. Ahmed’s concept of “the White gaze” helps illustrate how implicit ways of thinking about race lead to discriminatory actions.9 These experiences of personally-mediated racism might initially be disorienting for a racialized person, but may become “normal” when repeated over time. These interrelated levels of racism, informed by Ahmed’s work on the interrelationship among bodies and spaces, directly impact individuals’ lived experiences, including the possibility of accessing and entering the PT profession.

Literature Review

Structural racism operates through societal institutions, including healthcare, rehabilitation, and higher education, to limit opportunities among Black, Indigenous, and other racialized people in Canada.20,22-25 James et al highlight how rehabilitation science unwittingly reflects and reproduces structural racism by “absenting the role and impact of racialization” within the field.4 Grenier draws on critical race theory to illuminate how anti-Blackness, anti-Indigenous colonial relations, and Orientalism have and continue to influence the ways occupational therapy is taught and practiced in Canada.5 Martin and Kipling found that the experiences of Indigenous students at two Canadian nursing schools were shaped by racism from individuals, groups, and institutions.26 Beagan reported that racialized students in a medical school in Canada experienced marginalization through segregation, struggled to respond to racist jokes and comments from patients and staff, and were less likely to identify the advantages enjoyed by white students (eg, being granted student-doctor status).27 In 2017, Anderson DeCoteau et al used Jones’s framework to report experiences of institutional, personally-mediated, and internalized racism among medical students at a Canadian medical school.28

Research on racism within the field of physiotherapy in Canada is beginning to develop. In 2016, Gasparelli et al called for anti-racism education in PT in response to the report of the Truth and Reconciliation Commission of Canada.29 In 2017, Canada’s national professional magazine, Physiotherapy Practice, produced a special issue focused on issues of diversity and equity.30 In 2019, Vazir et al used Jones’s framework to illuminate institutional and personally-mediated racism experienced by racialized physiotherapists in Canada.31 Their findings aligned with reports among PT students in the UK of feeling like an outsider and being forced to navigate marginalizing behaviors by people who are white.32 Both studies call for changes to institutional structures and practices that produce these forms of exclusion.

Long-Term Effects of Racism in Health Professions

The long-term effects of institutionalized racism impact Black students’ possibilities in many health professions. A Canadian study found multiple barriers for entry into nursing programs for Black students, including gaps in academic preparation that impacted students’ ability to meet program entry requirements, lack of awareness about the profession, limited financial resources, and geographical distances.33 Similar barriers were identified for racialized students entering American physiotherapy programs.34,35 Racialized students in the UK were found to be twice as likely to have limited knowledge of physiotherapy than of medicine or nursing.36 Studies have begun to identify factors that support racialized students to enter physiotherapy programs in the US, including a racially-diverse faculty and student body,35,37 early exposure to the profession,34,35 and family influences.34

Strategies for Increasing Racial Diversity in Health Professions

Although there are no known studies investigating the recruitment of Black students into Canadian PT programs, a number of studies have explored recruitment strategies for increasing racial diversity in other healthcare programs in Canada and the US. Common efforts among these programs include changes to student admissions, curriculum development, faculty recruitment, support services, and community engagement.33,38,39 While these types of changes may be necessary, Cox et al described the need for a transformational shift within the profession in terms of understanding and dismantling its colonial underpinnings as a prerequisite for increasing the number of Indigenous students entering Canadian physiotherapy programs.40 In this inquiry, we turned our attention to the underrepresentation of Black physiotherapists in Canada. Specifically, we explored experts’ perspectives regarding the barriers to and opportunities for increasing the recruitment of Black students into Canadian PT programs.

Methods

Study Design, Participants, and Recruitment

This critical qualitative study explored considerations for increasing the recruitment of Black students into Canadian PT programs.41,42 Participants were sought purposively for their ability to inform these considerations, and included: (1) students currently enrolled in Canadian PT programs who self-identify as Black; (2) physiotherapists in Canada who self-identify as Black and who attended a Canadian PT program; and (3) university staff involved in the recruitment of Black students into PT and/or other health professional programs. We recruited through the research team’s professional networks across Canada, and email recruitment notices through national professional organizations. This study received approval from the University of Toronto’s Health Science Research Ethics Board.

Data Collection and Analysis.  One-on-one semi-structured interviews lasting 30 to 70 minutes were conducted at a location convenient to both the participant and interviewer (either in-person, via Skype, or via phone). Interviews were transcribed verbatim, checked for accuracy, and uploaded to NVivo. All student researchers conducted interviews, supported by an interview guide and training from two of the advisors. Data collection and analysis occurred concurrently to allow new information to inform subsequent interviews. Our analysis was guided by the DEPICT model, a multi-stage collaborative process designed to ensure rigor while being inclusive of novice researchers (see Table 1).43 Throughout the analysis process, we engaged with Ahmed’s and Jones’s ideas about race and racialization to help mediate and understand the participants’ narratives.9,16

Results

We met with 10 participants as part of this study: 7 Black physiotherapists, one Black PT student, and 2 university staff members whose longstanding role has been to promote recruitment of Black students into health professions programs. Overwhelmingly, study participants discussed the ways the field of physiotherapy is currently oriented to and around whiteness, and that Black people, including Black students, are routinely made to feel different because of their race, or are not included at all. We identified 3 themes that speak to the interrelationship between the whiteness of the field of PT in Canada and the ways Black people are limited in their movement within that field, or are not able to enter at all.

Theme 1: PT as a white space, articulates how the field of physiotherapy is oriented toward and around whiteness by the ways that white people have constructed the profession, including professional training programs.

Theme 2: The white orientation of PT limits Black people, focuses on the ways Black people are limited to enter or move within PT as a field due to its whiteness.

Theme 3: Co-creating an inclusive PT profession, is an articulation of the ways the field needs to reshape itself to include diverse ways of being and doing, including Blackness, in order to increase recruitment of Black students.

PT as a White Space

Participants discussed ways that the field of physiotherapy is oriented to and around whiteness, which has negative implications for their entry and movement as Black people within this white space. The student participant discusses how whiteness is reflected in the dominant image associated with physiotherapists:

I just think that PT is not something that Black people have been…it’s not something that has penetrated aspects of different Black cultures…I mean…a stereotypical image of a physical therapist… I think it’s very Caucasian. At least that’s the image that I’ve kind of—that comes into my mind. And I think that image isn’t conducive to Black people wanting to get into PT. —(PT Student)

The student describes how a Black person may not identify with or imagine themselves in the PT profession due to its whiteness, which is shaped by the people who inhabit it as predominantly white. As Ahmed reminds us, the institution, including professional training programs, is “an effect of the repetition of decisions made over time [by people within it], which shapes the surface of institutional spaces.”9(p133) Here, the student participant notes:

We [Black individuals in the physiotherapy space] just kind of take it for granted, kind of take it as a colorless experience. But it is an experience that—it’s very much shaped by the majority of people who are in that program. —(PT Student)

While the whiteness of the PT space is apparent or visible to Black people, participants discussed how this whiteness may not be apparent to those whose identities align with the orientation of the space (ie, those who are white). One student participant describes this invisibility as follows:

…[T]here’s a culture in place that is in a sense almost invisible to the people who are comfortable within and the people who are the majority within that culture. —(PT Student)

As Ahmed discusses: “whiteness is only invisible for those who inhabit it.”9(p133) The lack of awareness of the white orientation of PT for white people creates an atmosphere for institutionalized racism, meaning structures are in place to support whiteness, including resultant limited access for Black people. The whiteness is “around” and is “assumed to be given.”9(p133) For Black people, this both limits entry into white spaces and limits movement within the space, as discussed in the next theme.

The White Orientation of PT Limits Black People

The orientation of the physiotherapy space around whiteness limits the ways Black people come to enter and move within it. Participants discussed the ways personally-mediated racism, ie, assumptions about race that lead to discriminatory (inter)actions, was a significant way they were made to feel different or reminded of their Blackness within the white PT space. This exposure of difference within a white space was significant in terms of the ways Black participants felt they could move into or within the PT space.

As an example, this physiotherapist participant described an experience where they were “made [B]lack” through an interaction with a colleague. As this participant discusses, up to that point, communication with their white PT colleague had only taken place over the phone. Here, the participant discusses what happened when the two met for the first time in person:

[She said] “You know, I had no idea you were Black.” I’m like, “Well, you probably

wouldn’t, though, because you hadn’t met me…” And she said, “No, no, no,

 but you speak so clearly and you…” […] She couldn’t even think that what

 she was saying was really pretty rude, you know. But those kind of things,

you deal with that… And she knew me as white. Some of that pre-judgment of how you’re supposed to speak. —(Physiotherapist)

Although this interaction occurred in a professional context, not in school, this participant’s experience is relevant to the ways personally-mediated racism has implications for the movement of Black people within the broader field of PT. This example highlights the ways this individual was “exposed” as Black upon being seen by a white physiotherapist in-person.9(p133) The white colleague is aligned with and can easily move within the white PT space already, and makes bare the participant’s race through her comments, thereby making or “exposing” them as Black. In this way, this colleague embodied white ignorance, in that she was largely unaware that it was her comments that made the participant different and not their skin color. Africana philosopher Amir Jaima,44(p217) citing Mills,45 discusses white ignorance as the ways that white people are unable to understand the world that they have made. This lack of awareness, which in this case resulted in a personally-mediated racist interaction, sustains institutional racism in that it discourages Black people from entering and moving within white spaces.

Study participants discussed how this exposure of Black as different limited entry into professional training programs. As an example, a physiotherapist participant discusses a Black colleague who decided to reject his offer to a PT program after learning more about the racial construct of the profession as white:

…[He] interviewed, got in, talked to a student, uh, another… Black student who was there, and… that [ie, the whiteness of PT as a profession] heavily influenced his decision in fact to… turn down the spot when it was offered for him. —(Physiotherapist)

Here, this participant’s colleague was “stopped” from entering the white PT space as a Black individual.9(p139) Those who are white access and move into this white space without extensive consideration because whiteness aligns with the profession. In contrast, a Black individual either must “check” their Blackness within a space, or they are stopped from entering it in the first place.9(p139) Being “stopped,” then, can cause that individual to choose a different path, rather than if the “motility” had been afforded to them akin to white individuals within the PT space.9(p139)

This whiteness of the PT space also has implications for the ways Black people move within it, including the ways experiences and opportunities might be restricted. As an example, this physiotherapist participant recounted an experience that occurred during their PT training program:

Everything I wrote [as part of my physiotherapy training program] for, like, the next 2 years, I never got higher than a 76%… Until the last assignment… it’s anonymous, so you’re not allowed to use your own name at any point through this document…So… I get 98.5%. —(Physiotherapist)

As this Black participant discussed in another part of their interview, they had previously received high grades for academic writing throughout their undergraduate academic career. When they entered the white PT space for professional training, they were unable to attain high grades when their individual identity was “exposed,” or made visible or different, as Black.9(p139) When their Blackness was made invisible through the anonymizing process in that particular assignment, higher grades became attainable.

Participants indicated that a dramatic restructuring, or reorientation, of the PT profession is required in order for people who are Black to no longer be limited by the whiteness of the PT space. We explore this idea in the next theme.

Co-Creating an Inclusive PT Profession

As part of reorienting the field of PT, participants discussed specific ways the profession needed to be more inclusive, including re-creating PT as diverse and built upon authentic relationships and community needs. This authentic relationship-building can take many forms, but ultimately the aim is to create a diverse field where Black students and practitioners belong, and a range of life experiences, cultural perspectives, and ways of being and doing are valued. As an example, participants discussed the ways that, as part of recruitment into university programs, particular kinds of preparatory work tend to be valued over others. In the quote below, the university staff participant highlights how those already working within white PT spaces are biased in assessing recruitment criteria toward experiences that are upheld and valued by whiteness:

If you have folks… who’ve had the resource[s] at their disposable to go off and do, like, non-profit work…and you have students who…had to work part-time at [a restaurant] … . there’s still subjectivity and unconscious bias that creeps in…. So that’s why it’s important to have greater representation in terms of the folks that are making the decisions when they, when they look at it. —(University staff)

This participant highlights how “even bodies that might not appear white still have to inhabit ‘whiteness’ if they are to get ‘in.’”9(p134) Through the recruitment process, this unconscious bias that the participant mentions aligns with Ahmed’s discussions of institutional recruitment and the ways it “functions as a technology for the reproduction of whiteness.”9(p133) Recruitment indicates a particular “direction” and allows the higher education program, as well as the profession more broadly, to “renew and restore.” 9(p133) In this way, recruitment is a structure to accept certain kinds of people while keeping others out, with the potential to uphold institutional racism. To “get in” or “inhabit” the institution (and by extension, the profession of PT), applicants must enact particular values through the kinds of work they do before entering, such as non-profit work, which is vital to be included yet unevenly available to prospective students. The participant’s suggestion of more diverse recruitment officials is one important way to address this issue.

Participants also suggested the importance of having Black faculty leaders, teachers, and staff within Canadian PT programs. A physiotherapist participant discussed the importance of this:

Once you get out into the working world, you’re going to have to deal with people from different backgrounds… And I don’t think that that same level of diversity is really represented within any of the university programs, whether it’s from a faculty perspective or the instructors that come in to do, like, clinical skills or are TAs for some of the courses. — Physiotherapist

This physiotherapist discusses the importance of diverse faculty and instructors as a way to prepare students to be able to better serve racially-diverse Canadian populations. We argue that this diversity is also important as part of reorienting the space of PT more broadly. Following Ahmed’s statement that “white bodies do not have to face their whiteness” because it is a “given” and not an “obstacle,” and that the field of PT in Canada has been constructed as white, including more diverse faculty leaders and other instructors expands perspectives and possibilities for what comes into reach for students.9(p132) If “institutions provide collective or public spaces,” and white bodies gather, shape, and extend those institutions in certain directions, then it follows that the inclusion of Black faculty and instructors helps to reoccupy spaces so they become not “given” as white.9(p132) This includes the ways all students are educated to care for a diversity of people in the clinical world, as well as the potential for the institution’s whiteness to be disrupted and reoriented.

Participants also discussed the importance of authentic and inclusive community-building with diverse partners and communities. As an example, participants discussed the importance of outreach with racialized young people, such as earlier exposure to PT through career fairs at elementary and high schools, summer mentorship programs, and partnerships with Black student organizations. Throughout this process, Black physiotherapists and leaders would engage with youth, as discussed by this participant:

Getting people of color in those professions in front of people, of students of color, [helps them] to be, like, “This is an option for you, like, this is a real thing that could happen.” — Physiotherapist

Developing this kind of community outreach holds the potential for Black youth to imagine their own futures within PT, as well as the ongoing disruption and reorientation of the PT profession.

Additionally, as part of community-building, one university staff participant suggested:

If you want to have an equitable outcome, you need to have an inclusive process that includes all stakeholders there… so, like, the community at the table, community members being external to the university. We have students at the table as well, all giving their… their input in terms of the design. —(University staff)

This participant highlights the important relationship between equitable and authentic processes and outcomes. If administrators and faculty members want to achieve diverse program outcomes (by which we mean diversity in the profession, and that Black physiotherapists belong and practice as Canadian-trained professionals without barriers), then program processes themselves must be diverse, meaningful, and enacted such that Black people are centered and belong. In this way, it is not only for white people already within the profession to make space, or include Black people, since this implies that current spaces are adequate for Black people to be included.

Rather, as this participant suggests, for a new design of PT programs, Black people must belong to a process that legitimately meets community needs and values, and upholds a range of experiences and perspectives beyond whiteness. Recognizing that these inherited white processes and spaces could be otherwise, and that they currently limit what Black people can do, is essential for their disruption and reorientation—thus allowing new possibilities to come into reach.9(p130) This participant suggests more racially diverse community members need to be at the table as part of the process; however, as we argue in the following Discussion, this also requires a dismantling of unjust structures and discriminatory ways of seeing and doing that keep Black people out.

Discussion

We begin by considering the relevance of the phrase having a seat at the table, as discussed by one of our participants, by following Ahmed’s recognition that “to take up space is to be given an object, which allows the body to be occupied in a certain way,” or “to feel at home.”9(p138) In different ways, study participants discussed the relationship between Black people and the white space of the PT profession in Canada. Based on their discussions, we suggest that institutions are not neutral, but are “orientation devices, which take the shape of ‘what’ resides within them.”9(p132) The “what” referred to here is whiteness, shaped historically and contemporarily by white people, which is assumed to be “around,” like water for fish. Movement is not easy for Black people who do not align with this whiteness, and many are often stopped from entering the PT space in the first place. As Ahmed reminds us, recruitment into institutions, including PT training programs, “functions as a technology for the reproduction of whiteness” and “creates… what [the institution] imagines as the ideal.”9(p133-134)

The participants’ narratives also illustrated the interrelatedness of institutional racism and personally-mediated racism.16 Personally-mediated racist interactions—as assumptions about race that lead to discriminatory (inter)action—have upheld institutional structures that stop Black people from moving within the PT space or from entering at all. By supporting or upholding whiteness, institutional structures make Black people different, and create the context for personally-mediated racism based on white ignorance.44,45 Allowing for the movement of Black people into the field of PT in Canada requires more than opening the door, or making space at the table; it requires whiteness to be made different.

It follows then, in taking this statement of having a seat at the table seriously, that it is insufficient to suggest that Black people simply pull up a chair. As our participants discuss, when Black people enter white spaces, they are exposed as different and “stopped.” Ahmed might describe this as a dis-orientation; it is disorienting for the Black person experiencing the “stop,” but it also holds the potential to disorient the white space. “When [Black] bodies ‘arrive’ that don’t extend the lines already extended by [white] spaces, then those [white] spaces might even appear slantwise or oblique.”9(p.135)

These insights have direct implications for action if the goal is to increase the recruitment of Black students into PT programs. We must not insist that Black people “pass through” whiteness, or relish in “the presence of minorities and racialized others as an ‘eccentric’ effect.”9(p135),46(p26) As a profession, we must not force alignment with a space that will never fit. Rather, we advocate that this disorientation provides an opportunity to consider what is exposed about whiteness. How might the field of PT make ourselves different, and see the whiteness as something that is non-neutral as opposed to something taken as given? Rather than seeking to make space, how might we dismantle the table itself and jointly reconstruct it so there is no option but to have multiple people and perspectives at it? To quote one of our study participants, what is required is “a reorientation of what you believe the profession is.”

Two Future Directions

By suggesting those working within the field of PT in Canada attend to the disruption as an opportunity, we point to the possibility of capitalizing on the loss of orientation as potentially productive.47 We offer two directions that hold the potential to contribute to this reorientation: (1) advancing critical race theory in PT, and (2) enacting anti-racist education and practice.

Advancing Critical Race Theory in PT.  First, we align ourselves with James et al, who deftly call out the under-recognition of the impact and role of racialization and racism in rehabilitation science research and clinical practice.4 The small body of scholarship about racism in the context of PT in Canada is limited both in quantity and in engagement with critical race theory. Critical race theory takes the starting point that race is socially constructed and that racialization has structured society, which results in racism being positioned as ordinary and expected throughout societal institutions as opposed to something that is aberrational.1,10 Critical race theory embraces an intersectional approach, which understands the unearned advantage and disadvantage produced by racism to be shaped in complex and powerful ways by other historic systems of inequality (eg, colonization, ableism, heterosexism).11

This approach centers “storytelling” and “counter-storytelling” as key tools for unlearning harmful beliefs that are understood to be true.42 Importantly, this approach is emancipatory in its orientation, such that scholarship is part of the praxis toward liberation. Critical race theory was borne in legal studies and has flourished in other fields (eg, education48 and social work49), but is at a nascent stage in PT and the rehabilitation sciences broadly, with several notable exceptions.4-6

Enacting Anti-Racist Education and Practice.  Second, we advocate for members of the PT profession in Canada, and especially those in positions of leadership, to enact anti-racist education and practice. Here we invite an embrace of Jaima’s call to address white ignorance, which results in reproducing exclusivity and hierarchies of knowledge, and advocate for a centering of Black and other racialized perspectives as part of reorienting the field of PT more broadly.44 We advocate Nixon’s framing of “practicing critical allyship” as an orientation for people who find themselves in a position of unearned advantage in relation to systems of inequality.21,50 In the case of racism, this call for practicing critical allyship applies to people who are white, and for anti-Black racism in particular, the orientation applies to anyone who is not Black.51

This anti-oppression approach calls for action that is in solidarity with people who are historically oppressed to resist and dismantle these social structures that are harmful for all. This is in contrast to the dominant orientation that positions people “on the top of the coin” (ie, in a position of unearned advantage, or privilege) to operate from a motivation of altruism or helping.21 This approach invites white people to anticipate and resist the emotions (eg, shame, denial, guilt) and behaviors (eg, shutting down, making claims to good intent) that sabotage unlearning and progress toward racial justice.52 Further, in line with critical race theory, this approach sees learning and unlearning not as an end, but as the means to the end of concrete social change.1,10

The challenge for PT is to reflect and act on what “practicing critical allyship” will look like in education and practice. How might we center the expertise, perspectives, and bodies of Black people in all aspects of the profession? How might we embrace and advance widespread learning on structural racism, especially for people who are not Black, and use new insights to fuel concrete action? How might we embrace anti-colonial and anti-racist pedagogy in our teaching? PT leaders producing statements of solidarity with Black communities can be seen as an important step, but how might these rhetorical commitments be translated into action?53,54

Last year saw the creation of the Black Medical Student Association of Canada, followed several months later with public calls to action for all medical schools in the country to, among other goals, improve representation of Black students in medical schools.55 How might we invite and make room for the wisdom and experiential expertise of our Black and other racialized PT students to help drive the evolution of the profession? A crucial step in this movement is support for the emerging Black Physiotherapists Association of Canada, which stands to be a source of mentorship and wisdom as we move toward co-creating a more inclusive profession.

Limitations

This analysis draws on the narratives of 10 individuals. While our data support this initial analysis, further research is needed with larger and more diverse samples to more comprehensively understand this issue. For instance, we do not engage with the vast heterogeneity among Black people and populations, nor do we explore the intersections of racism with other systems of inequality, which can produce complex forms of disadvantage. Furthermore, this analysis focuses on whiteness and Blackness, and does not explore the role of non-Black racialized people in terms of experiencing racism and also potentially upholding anti-Black racism. A key limitation of this study is the identification of all members of the research team except for one as non-Black. We have taken steps to deepen our insight regarding the influence of each of our positionalities on the analysis, and we have sought guidance from Black colleagues with expertise in critical race theory; however, we recognize that this analysis may be impoverished due to the lack of experiential expertise and formal training in critical race theory held by our team.

Conclusion

Queer and cultural theorist Jack Halberstam writes of the importance of unlearning as part of recognizing certain inherited processes and ways of doing that are assumed to be more legitimate or valuable than others.47 This requires engaging with a vulnerability, humility, and even a foolishness, meaning a willingness to risk being wrong, but to try with openness and curiosity anyway.56,57 This not knowing seems to fly in the face of everything the academy, including PT programs, aims to perform: certainty, objectivity, and seriousness.58 Yet, it is this capacity for humility and re-learning that is required to reorient the profession. Our analysis offers an introduction to imagining PT differently, which we hope will be embraced with curiosity and an appetite for greater anti-racist learning and action. This research was completed in partial fulfillment of the requirements for a MScPT degree at the University of Toronto. We thank our participants for their time and wisdom; the Ontario Physiotherapy Association Central Toronto District, and Dr. Barbara Gibson (Department of Physical Therapy, University of Toronto) for their funding contributions; and Nancy Salbach and Kelly O’Brien for their guidance. We also thank Stephanie Lurch for her helpful comments on an earlier draft of this article.

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About the Author(s)

Paulina Wegrzyn, MScPT

Paulina Wegrzyn, MScPT, graduated from Western University in 2014 with a BA in Classical Studies and a Minor in Greek and Roman Archaeology, and from the University of Toronto in 2019 with her Masters in Physical Therapy. Since graduation, she has focused her clinical practice in the areas of pelvic health and outpatient orthopaedics. Her humanities background helps inform and facilitate her biopsychosocial approach to treatment. She strongly believes that a background in the humanities fosters creativity, empathy, and critical thinking in rehabilitation professionals.

Celina Evans, MScPT

Celina Evans, MScPT, graduated from the University of Toronto with a Masters in Physical Therapy in 2019. She also holds a Bachelors in Human Kinetics (Hons) from St. Francis Xavier University. She practices as an acute care physiotherapist at Surrey Memorial Hospital, in a position which rotates annually. Since graduation, her areas of practice have included oncology/palliative care and stroke, interspersed with several stints covering the COVID ICU and/or medical wards. Serving the ethnically, linguistically, and socioeconomically diverse population of Metro Vancouver, she uses her studies in the humanities to assist her patients in achieving equitable health outcomes, and to provide culturally sensitive services in whatever languages her patients may require.

Gina Janczyn, MScPT

Gina Janczyn, MScPT, is a graduate of the University of Toronto with a Master of Science degree in Physical Therapy. Prior to finishing her Master’s degree, Gina attended Ontario Tech University and obtained her Honours Bachelors of Health Science degree. Currently, Gina works full-time in a private clinic focusing on orthopaedics and neurological rehabilitation. Gina recognizes the importance of acknowledging humanities and social justice, especially in healthcare. Gina focuses on providing holistic, client-centered care in an inclusive environment for all her clients.

Gina Janczyn, MScPT

Gina Janczyn, MScPT, is a graduate of the University of Toronto with a Master of Science degree in Physical Therapy. Prior to finishing her Master’s degree, Gina attended Ontario Tech University and obtained her Honours Bachelors of Health Science degree. Currently, Gina works full-time in a private clinic focusing on orthopaedics and neurological rehabilitation. Gina recognizes the importance of acknowledging humanities and social justice, especially in healthcare. Gina focuses on providing holistic, client-centered care in an inclusive environment for all her clients.

Remi Lu, MScPT

Remi Lu, MScPT is a physiotherapist working in private practice orthopaedics and sports rehabilitation. Remi graduated from the University of Toronto with a Master of Science in Physical Therapy and is continuing his education within the Canadian Physiotherapy Association’s Orthopaedic AIM system. Remi believes that continuing education in the humanities as a healthcare practitioner is integral to best serving the population’s healthcare needs, and it is a key element to improving health outcomes at both a community and individual level.

Rahim Manji, MScPT

Rahim Manji, MScPT works in the community as a Neurological and Musculoskeletal Physiotherapist. He completed his undergraduate degree in Honours Kinesiology at the University of Waterloo, and his Masters of Physiotherapy at the University of Toronto. Rahim constantly seeks to understand the lived experience of his clients from a medical, socioeconomic, and cultural perspective to provide a more holistic form of healthcare. Rahim also believes that, in order to keep Canadians healthy, we must provide equitable access to healthcare to all Canadians.

Meredith Smith, MScPT

Meredith Smith, MScPT is an Assistant Professor in the Teaching Stream within the Physical Therapy Department at the University of Toronto. She also is the Physiotherapy Academic Clinical Educator at Toronto Rehabilitation/University Health Network and continues to practice clinically at Balance Physiotherapy. She is a graduate of the Masters of Physical Therapy program at the University of Toronto and holds a Bachelors in Physiology from Michigan State University. Clinically, she has worked with clients with a variety of conditions with a focus on clients living with neurological conditions. Meredith has also been involved in research related to racism and oppression. She feels it is important to have humanities incorporated within the curriculum for health professionals to provide a foundation in how society and culture including racism impact opportunities, education, health and access to healthcare.

Stephanie Nixon, PhD

Stephanie Nixon, PhD is Vice-Dean (Faculty of Health Sciences) and Director (School of Rehabilitation Therapy) at Queen’s University. Prior to joining Queen’s in 2022, Stephanie was a professor in the Department of Physical Therapy and the Dalla Lana School of Public Health at the University of Toronto for 15 years. Stephanie is a straight, white, middle-class, able-bodied, cisgender, settler woman who tries to understand the pervasive effects of privilege. She draws on the humanities to explore how systems of oppression shape health care, research and education, and the role of people in positions of unearned advantage in disrupting these harmful patterns. Stephanie developed the Coin Model of Privilege and Critical Allyship as a way to translate core ideas about anti-oppression with others who, like herself, occupy multiple positions of unearned advantage.

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