We Are No Longer Alone: Student Panelist Reflections on the Advancing Accessibility and Disability Equity Summit
Table of Contents
Introduction
The American Council of Academic Physical Therapy (ACAPT) Advancing Accessibility and Disability Equity Summit was designed to explore the lived experiences of disabled therapists and therapy students. An open call was issued to all ACAPT member programs in the months preceding the event, inviting disabled DPT students to apply and attend. Multiple students applied by providing a brief biographical overview and statement on why they desired to engage in the Summit. Five students were subsequently invited to attend and share their experiences on a student panel during the first day of the event. What follows are their own written reflections and observations of this experience, in their own words.
The Students Speak
The five of us were incredibly honored to speak on a panel at the ACAPT Advancing Accessibility and Disability Equity Summit about our experiences as DPT students with disabilities. Each of us come from different backgrounds and represent the diverse experiences of living as a person with a disability, but as we reflected on what the Summit meant to us, three common themes emerged from our conversation: Community, Empowerment, and Optimism.
Community
Amanda:
In disability advocacy spaces, I tend to be the only DPT student. When surrounded by DPT students, I tend to be the only student with a disability. This Summit marked my first time being surrounded by a diverse and talented community of disabled clinicians and students. It was the first healthcare space where I felt I could truly be my whole self without judgment. Knowing that I am not alone and that I have such a supportive community encouraging me to succeed has helped me become more confident as a clinician and as a human.
Emily:
My fellow panelists and other attendees with my same diagnosis were validating and encouraging, and it is difficult to put into words the comfort those connections had and continue to have on my life. I am eternally grateful.
Greg:
One of the most rewarding aspects of the conference was meeting other students and professionals with disabilities. Conversations with these individuals revealed a shared determination to break down barriers and challenge stereotypes. Many shared practical advice on navigating clinical rotations, advocating for accommodations, and pursuing leadership roles in the field.
Mackenzie:
I was reminded how lovely the disabled and physical therapy communities are, and how the intersection between the two is exactly where I belong. Meeting and talking to the four other speakers felt as if I was catching up with old friends already. These other students innately and intimately understood my experiences and struggles in ways my classmates and other academic peers could not.
McCall:
Before the conference, I felt that if I was not doing the work to advocate for myself and other PT students with disabilities after me, then no one else was doing the work and it would never get done. The Summit showed me that there were others bearing the burden with me and that I am not alone. To say the least, it was incredible to be in a room with so many people who were there as advocates for PTs and PT students with disabilities. They were there for me, doing the work that at times I feel is not getting done. They were all there not just as advocates, but as accomplices. I had more meaningful conversations in the short time spent at the Summit with a room full of strangers than I had had in a long time. I felt a deep sense of peace, joy, and belonging.
Empowerment
Amanda:
I was shocked and delighted to find that the conference attendees actually wanted to learn about our experiences and hear our ideas! As someone with ideas that are frequently perceived by others as “unrealistic,” the engagement from the audience during our student panel was incredibly validating, and reinforced my belief that disability equity is not as complicated or impossible as people make it seem.
Emily:
This Summit created space for preliminary conversations to happen. The continued steps are to dismantle complacency and implicit bias, creating an inclusive reality where needs are met and legal rights are honored. Let’s work together to include each disabled individual as a whole—not who they are because of their disability, not what they can and cannot do because of their disability, but for who they are as a human being.
Greg:
This experience has deepened my understanding of how disability enriches rather than detracts from professional practice. It has also clarified my aspirations. I aim to be a voice for students and patients with disabilities, ensuring that their needs are represented in both education and clinical care. My goal is to collaborate with institutions to implement systemic changes that make physical therapy education and practice more inclusive. I hope to mentor future generations of physical therapists, sharing the knowledge and experiences I have gained.
Mackenzie:
One moment from that morning that is etched into my mind permanently was when we were presented the story and experience of a therapist who is legally blind. I immediately recalled a conversation with a professor in my program where they told me about how a previous student had been encouraged to—and did—drop out after being diagnosed with a condition causing progressive vision loss. The statement made was, “You need to see to be a physical therapist.” Yet here, in front of me, was the proof that that was false. That previous student had been needlessly denied an opportunity—and their dream—because of systematic ableism. It became abundantly clear in that moment that my knowledge of the ADA—although not widely upheld or enforced—was the only thing protecting me from sharing that student’s fate.
McCall:
There are still people who believe that I cannot or should not be a PT, even after being a successful student throughout school. The weekend of the Summit was full of people who know my Cerebral Palsy will make me a better PT, not a weaker one. On that weekend in Chicago, everything said and everyone there reassured me that I am where I am supposed to be and that I am going to be a great PT. I did not realize how much that was exactly what I needed at the time.
Optimism
Amanda:
In healthcare and academia, it usually seems like DEI-related improvements are implemented too slowly, or not at all, and it is easy to become pessimistic as an advocate. Although there is still much work to be done to ensure that disabled students and clinicians are welcomed and appreciated within healthcare spaces, I believe that this Summit will result in some concrete positive changes in the physical therapy profession, especially regarding implementation and wording of technical standards.
Emily:
It was an awfully dark place I was in prior to attending ACAPT’s Accessibility Summit in June 2024, struggling with access to my accommodations and relentlessly advocating for my rights as a disabled student in a DPT program. I was feeling isolated beyond compare and so broken. One of the ways I cope is writing, and this is a reflection of my feelings:
they take away my humanity when they do this to me
they make me hate myself when they do this to me
they make me the one to blame
and they’re blaming me for something i cannot control
something i have laws protecting me for
and yet, i am always pinned down
struck out
and strung out to dry
fighting for my life
to keep the breath in my lungs
completely, utterly alone
the insanity comes rushing in
and i enter the asylum saying,
“i wish i was never made this way.”
over and over and over and over again.
I came to the Summit seeking connection, honesty, vulnerability, and most importantly, hope. I left with more than hope. I was inspired to continue to stand tall and take up space in every room I walk into regardless of my disability. I gained a newfound self-confidence through the Summit’s teachings on how to better articulate conversations around access and inclusivity.
Greg:
Hearing from seasoned professionals who had overcome similar challenges gave me a renewed sense of confidence. Their stories of resilience underscored the importance of representation in shaping an inclusive future for physical therapy. Speaking at this conference was more than a professional milestone; it was a profoundly personal journey of growth and connection. It reinforced my belief that diversity, including disability, is a strength that enhances our profession’s ability to deliver compassionate, innovative, and effective care. The insights gained from this experience will continue to shape my approach as a student and, eventually, as a licensed physical therapist. Most importantly, the conference reminded me that we are not alone in our struggles or our triumphs. By sharing our stories and learning from one another, we can create a more inclusive and equitable future for all.
Mackenzie:
I realized how much bigger this event was than just talking about our experiences. We were discussing re-writing technical standards, identifying systemic ableism in curriculum, modifying admissions requirements and processes, etc. This was a real meeting of the minds to solve the issues blocking the accessibility of our profession. I quickly began taking notes on these topics to take back to my program.
McCall:
I left knowing that I had people in my corner to ask for resources, give me advice, fight on my behalf, or even just listen and be outraged with me when I experience ableist and unjust acts. I left knowing that it is not a weakness for me to ask for the accommodations I need to succeed in the classroom, clinical setting, or workplace. I left calling people friends who were strangers just a few days before. I left knowing that I have a voice and should not be scared to use it, and with fear being replaced with hope for my future as a physical therapist with a disability and the physical therapy students with disabilities who will come after me.
Call to Action
This Summit created an opportunity for us to find each other, and we now know that we are no longer alone. Although we shared the lived experiences of five individuals, there are many stories yet to be told—each deserving of the opportunity to be seen and heard. There are still barriers to break down and commonalities to be found. We ask that you:
- Continue moving forward, creating waves, and raising your voice to advocate relentlessly for the rights of physical therapy students with disabilities.
- Continue to strive toward equity in all walks of life.
- Continue to find community in those who support your mission.
- Continue to be empowered within your identity.
- Continue to resist those who try to suppress your identity, and those of other marginalized groups.
- Never lose hope.
About the Author(s)
Amanda Michel
Amanda Michel (she/her) is a DPT student at Simmons University (graduating May 2025) with a passion for disability justice. She received PT and OT services as a child for developmental motor delays and was later diagnosed with autism and ADHD. Amanda uses her experiences as a patient in the medical system to relate to individuals with disabilities currently seeking care and to advocate on an individual, community, and policy level. Before beginning higher education, Amanda worked as a professional ballet dancer while leading efforts to increase the accessibility of dance education for students with disabilities. As a PT student, she worked as an adaptive sports coach and served as a student intern with the APTA of MA DEI Committee and as a member of APTA’s Disability Justice and Anti-Ableism Catalyst Group. She has presented research at APTA’s Combined Sections Meeting and the APTA of MA Annual Conference, and she served as a student panelist at ACAPT’s Inclusive Horizons Summitt. She was also featured in APTA Magazine’s July 2024 issue. Amanda’s clinical interests include pediatrics, neurology, and acute care, and her research interests include the intersection of disability identity and therapeutic alliance. As an artist and avid reader, Amanda believes that the humanities are essential in delivering engaging, patient-centered care.
Emily Reester
Emily Reester (she/her) is a student at Saint Joseph’s University in Philadelphia, PA, pursuing a Doctorate in Physical Therapy with an anticipated graduation in January 2026. At age four, Emily was diagnosed with bilateral sensorineural hearing loss, and she has worn hearing aids since to engage with the world around her. Her advocacy journey began early, from participating in IEP and 504 planning meetings in her primary education to presenting at the Alexander Graham Bell (AG Bell) Association for the Deaf and Hard of Hearing’s bi-annual conference at sixteen. She continued sharing her story at local colleges and participated in advocacy events through AG Bell. She recently spoke at ACAPT’s Inclusive Horizons Summit in June 2024. Inspired by physical therapy in high school, she’s passionate about helping others despite facing challenges as a person with an “invisible” disability. Emily believes that her disability has shaped her into the person she is today. To Emily, the humanities are an integral part of understanding lived experiences of individuals and help foster connections of community that are meaningful, beautiful, and vulnerable.
McCall Rae
McCall Rae (she/her) is a DPT student at Tennessee State University graduating in Summer 2025. She was born with Spastic Diplegia Cerebral Palsy and received physical and occupational therapy throughout childhood. At the point in her life when she began to contemplate what career she would like to pursue, physical therapy stuck out because she knew the significant impact it made in her life and wanted to walk with others as they worked through their own rehabilitation journey. Knowing the importance of having incredible advocates at every point in her life who played a part in her pursuing her goals, she strives to be an advocate for others and to be the person who encourages them to go after their goals, no matter how big, small, or impossible they may seem. One of the many things McCall enjoys about the field of physical therapy is the opportunity to spend one-on-one time with people, getting to know them and hear their stories while also providing the treatment they need. During her time at a campus ministry as an undergraduate student and later as employee at that same ministry, she began to see the significance that taking the time to see, listen to, and get to know someone by spending intentional time with them and being present can have. Here, she also gained exposure to the humanities and began to recognize the power that they have to bring people together, cultivate relationships, and allow us to feel seen, known, and foster a sense of connection to the people and the world around us.
Mackenzie Kennedy
Mackenzie Kennedy (she/her) is a student physical therapist at the University of North Georgia, currently pursuing her DPT and holding the credential of an ACSM Certified Exercise Physiologist. With a strong foundation built upon shadowing, volunteering, and working within the physical therapy field since 2018 across numerous settings, Mackenzie brings both practical experience and a deep commitment to fostering inclusivity to her academic pursuits. Recognizing the importance of accessibility and disability equity, she has pioneered new guidelines and ideas for inclusivity within the UNG physical therapy program, actively paving the way for future students. Looking ahead, Mackenzie will be transitioning to a full-time therapist role with Benchmark Physical Therapy in the greater metro Atlanta area, where she intends to continue her vital work in promoting inclusivity, with a particular focus on bringing in LGBTQ+ inclusive practices. Drawing from her own lived experience navigating the world with Ehlers Danlos Syndrome, she offers a personal perspective to the crucial conversations surrounding accessibility and disability equity within healthcare. As a student panelist at the “Advancing Accessibility and Disability Equity Summit,” she shared reflections on her journey and the importance of fostering a more inclusive environment for both patients and future clinicians. Mackenzie’s clinical interests include pediatrics, chronic pain management, and the complexities of connective tissue disorders, areas deeply informed by her personal understanding of navigating healthcare with a disability.
Gregory Zambrano
Gregory Zambrano (he/him) is a Doctor of Physical Therapy (DPT) student at the Massachusetts College of Pharmaceutical and Health Sciences, living with Hereditary Spastic Paraplegia (HSP) and receiving physical therapy for as long as he can remember. His personal experiences with disability drive his passion for improving accessibility and inclusion within healthcare. Gregory emphasizes the importance of empathy in patient care, using his own journey to advocate for better understanding and inclusion. Through his studies and advocacy, he strives to foster compassionate care and improve rehabilitation outcomes for individuals with disabilities.
This work is licensed under a Creative Commons Attribution 4.0 International License.
Table of Contents
Congratulations to Doctor of Physical Therapy Student, Katie Spencer (Marist University), winner of the annual Student Essay Contest, co-sponsored by the American Counsel of Academic Physical Therapy (ACAPT) and the Journal of Humanities in Rehabilitation (JHR). The eighth in an annual series, this national contest offers a creative opportunity to ignite critical reflection in Physical Therapy students across the nation to support holistic approaches to patient care. This year’s essay prompt was:
In clinical practice, physical therapists frequently encounter moments of uncertainty—cases where clear answers or established protocols may not exist for a given problem. Navigating this ambiguity requires not only clinical expertise but also the capacity to adapt, reflect, and respond to new and complex situations. The Master Adaptive Learner (MAL) model emphasizes lifelong learning and adaptability in these uncertain moments, encouraging clinicians to continuously reflect, learn, and innovate in their approach to patient care.
In this essay prompt, we invite students to describe their experiences of navigating ambiguity and uncertainty in clinical practice or education, and offer examples of how their encounters with the health humanities—ie, engagement with literature, ethics, storytelling, or the arts—have influenced their approaches to healthcare. How have they helped you cultivate the skills to become a Master Adaptive Learner (one who is more reflective, adaptive, and innovative)? How have the humanities enhanced your ability to manage uncertainty with empathy, curiosity, and creativity? In what ways have these disciplines guided your growth as a resilient and adaptable clinician in training?
A blanket of heat suffocated me in the small, overly-crowded room. Black garbage bags over the windows. Babies crying. People speaking in an unfamiliar language. Women and children with the look of desperation. With my face flushed, sweat dripping everywhere, I wondered, how will I make this work?
I was in the middle of Syria, sent to provide medical care, yet nothing in my training prepared me for the reality I faced. These were refugees seeking safety from civil war. Neighboring countries fearing for their national security pushed them further south. State actors, paramilitary, and militias, all pursuing their own interests without regard for the welfare of the people. A humanitarian crisis is an understatement. There was no protocol for treating under these conditions. These patients need me. Get it together.
Her
Amidst the chaos, a young girl with dark, unkempt hair caught my attention. Her sandals were too small for her feet. A bright-red Minnie Mouse shirt showed her belly, noticeably malnourished. She followed me through the day, watching me treat each patient. She became my partner, handing every child I treated candy from my bag. Through an interpreter, she shared that she “dreamed of becoming a doctor like me.” I smiled and replied, “Maybe one day you can.” Her face dropped. I realized that I had made a mistake. The interpreter informed me that insurgents had burned her school down. How could I have been so ignorant to say such a thing?
I had prior experience in resuscitative surgical care in sterile and safe environments in the United States, but that sandy and war-torn Syrian village contrasted to the point of being surreal. Instead, I was providing rehabilitative care to villagers whose pain, both physical and mental, was constant. I treated goat herders suffering from chronic pain and lifelong malnutrition. I treated children with developmental disabilities, fashioning shoe inserts from just a pliable splint and an ace bandage. I listened to my patients, a challenge via an interpreter, to understand their impairments and find solutions. I listened to a woman explain that sometimes she had trouble breathing when domestic tensions were high. Another woman shared her story of fertility concerns. These were mothers, daughters, and sons. All of them were plagued by conditions that people back home would see specialists for, but that was not an option there. This was their lived experience, and for the kids, the reality of their childhood. I learned how to adapt to any environment, trusting myself to be innovative when resources were low, and stakes were high. It seemed to become more difficult as the day wore on, and the resources inside dwindled while the line outside kept growing. In that Syrian village, healthcare was simple, yet still so complex, boiling down to one simple question: How can I do the most with the least?
The host nation’s forces would refill my cup of tea as a gesture of respect, while the patients offered me their stories of pain and hope, translating their trials and tribulations into emotions I could deeply feel. Each villager had a story, reinforcing that healthcare goes beyond what the eye can see. Their stories were a brutal reminder of our different worlds, where theirs showed me what resilience and compassion truly are.
Now, halfway across the world from that sweltering, overcrowded room, I am coming to understand that physical therapy is about appreciating our patients’ stories, hardships, and dreams. When you genuinely listen, you find that in helping them, you help to heal yourself.
Me
As a child, I would write fictional stories with my mom at the kitchen table every week. Then she was gone. The hurricane came next, washing away the memories left of her. Then my father left too, as if there was nothing left to stay for. My childhood disappeared in the wreckage, and with them, so did my writing. For years, I buried reflection under the weight of survival, to make it to the next step in my life, convincing myself to keep pushing through. In sharing this with you all, I have rediscovered my writing amidst the debris. My writing has led me to process—to become more at ease with everything I have seen, lost, and even become.
The Master Adaptive Learner Model is built on reflection, but that purpose extends beyond growing as a clinician. It demands a responsibility to take your experiences, learn from them, and make a difference in this world. I have seen firsthand what happens when a child’s future is stolen before they even had the chance to dream; however, I have also seen that even in the darkest corners of war, compassion endures.
Us
Thus, I will stand where medicine, ethics, and humanity collide, embracing the inherent paradox of being both a soldier and a healer, and choose to do good. I hope to stand side-by-side with that young girl—excuse me, that young doctor— and, one day, inshallah (God willing), make a difference together.
About the Author(s)
Katie M. Spencer, SPT
Katie Spencer is a Doctor of Physical Therapy student at Marist University in New York. After experiencing generous community support through various childhood hardships, she made it her life-long mission to continually support those who did not have anyone. To engage with health humanities firsthand, she enlisted in the U.S. Army at 17 years old as a medic where she provided care to marginalized communities, both domestically during times of crises and overseas in austere environments. In her free time, she enjoys exploring hidden swimming spots and off-the- map towns with her canine best friend, Raqqa, whose name is a tribute to the stories shared with you of the resilient Kurdish women who have touched her life deeply.
This work is licensed under a Creative Commons Attribution 4.0 International License.
Table of Contents
International student experiences are increasingly common within health professions including physical therapy.1 Whether students are connecting to their altruistic nature or seeking to fulfill an academic requirement for service learning or clinical education, there are a variety of reasons why one may elect to engage internationally during physical therapy training. Reported benefits of international experiences include improved communication, world view, cultural humility, and desire to work in resource-limited settings after graduation.2 Much of what a student clinical experience will entail outside of the United States will depend on the location of the experience and on program-specific expectations.2 Beyond that, the human factors unique to each exchange and individual cannot be planned.
In this example, we followed an American student who elected to engage in reflection to process a challenging and novel situation in a foreign clinic. As he accounted for cultural factors and attended to the dynamic between the family and the medical center where he worked, he learned to adapt while simultaneously finding his own voice. Yet an evident dichotomy between his own uncertainty and need to be the ‘expert’ remains. This experience, one that pulled together the tangible with the intangible, is one that will live alongside the student as he transitions to his own independent practice. Following is Mitchel Fenrich’s personal account of his clinical rotation in Tanzania.
Arrival—and a Special Case
In early 2022, I arrived in Tanzania as an eager physical therapy student ready to engage in a clinical rotation at the Dodoma Christian Medical Center (DCMC) in Dodoma, Tanzania. Unlike my clinical experiences in the United States I was living in on-site housing and could see DCMC from my temporary home. Each day I walked the path to the physical therapy clinic while soaking in the warm sunshine and fresh air. During this early time in Tanzania, I explored the city of Dodoma, tried new foods, and adjusted to the flow of healthcare.
A few weeks into my 10-week rotation, Nuru, my clinical instructor and a Tanzanian physiotherapist, and I had the opportunity to evaluate and treat an infant we would come to believe was at high risk of having cerebral palsy. As someone with an interest in working with children, and specifically those with disabilities, the subsequent physical therapy management of this child’s case proved to be one of the most impactful parts of my experience in Tanzania. What follows is my honest reflection and recall of this experience through which I confirmed my desire to become a pediatric physical therapist.
Photo 1: Entrance, Dodoma Christian Medical Center
Photo 2: Dodoma Christian Medical Center
Encounter and Evaluation
This story begins when a staff member at DCMC sat across from me at lunch and told me about his daughter, Davina. She was 20 months old and was missing key developmental milestones. After this initial meeting at the cafeteria, I talked with Nuru; a plan was made for the child to be brought into the physiotherapy clinic for an evaluation. Previous notes in the electronic medical record from the pediatrician at DCMC described the infant’s full-term birth as a difficult delivery with mild/moderate birth asphyxia, as well as noting weakness of the right arm and leg. Nuru had seen the child on one occasion at age 14 months, and at that time, our co-worker’s child was scooting on her bottom on the floor to explore her environment, but had not begun standing, walking, or crawling. Nuru also noted right arm hypertonicity and disuse.
Photo 3: Nuru in one half of the physiotherapy clinic
Photo 4: View of the other half of the physiotherapy clinic
Evaluation Session
The evaluation took place a few days after my interaction with the child’s father at DCMC’s cafeteria. At this time, Davina was just a few months shy of her 2nd birthday. During the subjective portion of the evaluation, we learned that her parents were concerned she was still not standing and walking unsupported, not using her right arm/hand, and showing limitations in communication. During the objective piece of the evaluation, our relevant findings included confirmation of hypertonicity of the right arm and leg when compared to the left, no standing or walking without support, no creeping or crawling, and solely using her left hand for reaching tasks. Using pieces of the Hammersmith Infant Neurological Examination,3 Davina’s hand and arm asymmetry were clear. At rest, her right hand was in a near-fist position, while the left hand rested open. The right arm rested in a dystonic position in comparison to the left, and there was increased resistance to passive right shoulder flexion and right forearm pronation/supination when compared to the left. We were also able to complete the gross motor subdomain of the DAYC-2,4 which indicated Davina was in the 6th percentile.
As we synthesized the past medical history, current physical exam, and insights from her parents, we came to believe a high risk of cerebral palsy clinical diagnosis was warranted. Davina displayed motor dysfunction (observable hand and arm asymmetry, low score on DAYC-2,4 disuse of right hand and arm), as well as having a clinical history of a labored birth with associated impairment in oxygen and blood flow to the brain, as reported by the pediatrician. These criteria in combination allow for the clinical diagnosis of high risk of cerebral palsy to be used.5
Perception of Disability in Tanzania
Cerebral palsy is a heavy label. We did not want to be wrong, but this is a very critical time-period for the child—the range of 12 to 24 months. The patient is still at an age where we could maximize neuroplasticity in movement training and try to maximize motor function.
Through conversations with Nuru, I learned that if a child is born in Tanzania with a disability (eg, cerebral palsy), it can be perceived as a punishment for something negative the parents did in the past. Unfortunately, it is common for these children to be kept out of the public eye (eg, the community, school) for this reason, and it can be common for people to hide their diagnosis and to not seek the help they, or their loved one, need.6 In the United States, I had previously spent a significant amount of time at Easterseals Wisconsin Camps, an organization supporting and empowering people with disabilities across the lifespan. This experience allowed me to connect with and befriend many people living with autism, Down Syndrome, cerebral palsy, spina bifida, and other conditions, offering me insight and understanding into people’s lived experiences with disability. It allowed me to realize how powerful and dehumanizing the stigma around disability can be, even in the United States. I frequently heard about people’s experiences of being excluded, misunderstood, teased, and the lack of support, leading individuals to feel isolated, broken, or unwanted.
A Key Point of Cultural Sensitivity
At one point during the evaluation session, I directly used the phrase “cerebral palsy” while talking with Nuru about our findings. I didn’t realize it at the time, but after the evaluation was over, Nuru told me the parents’ expressions changed and their faces fell when I used those words. This prompted a conversation between Nuru and me around views of disability. She recommended communicating the signs, symptoms, and observed clinical presentation when talking with the parents instead of directly using the term. This became even more important when her parents shared that they were being told by others to take Davina to another town to have surgery on the dystonically-positioned right elbow. Nuru and I educated the parents about how we believed the positioning and hypertonicity of the elbow was neurologic in nature, not orthopedic, and that we did not believe that surgery was indicated. This was also a more appropriate approach, as the pediatrician ought to be the one to formally establish a neurological diagnosis such as cerebral palsy.
With all of this in mind, I was incredibly impressed by how open and supportive her parents were. Their support and love for their child was unwavering, and they sought help for her in any ways that they could. They wanted to better understand her condition, her needs, and any potential developmental considerations, as well as to connect her with whatever resources were available. Nonetheless, I did get a firsthand glimpse into the stigma surrounding cerebral palsy and disability in Tanzania.
Treatment Plan
Through conversations with both Davina’s parents, as well as Nuru, we progressed treatment moving toward the following goals: 1) stand independently; 2) walk independently; 3) use the right hand/arm in reaching tasks, as well as other functional activities. Early Intervention for Children Aged 0 to 2 Years with or at High Risk of Cerebral Palsy,7 which is an international clinical practice guideline based on systematic reviews, included the following recommendations:
- Begin intervention at the time of suspected diagnosis to harness neuroplasticity through specific training.
- Implement task-specific motor training with parental coaching to structure practice beyond scheduled therapy sessions (for adequate dosing).
- Implement bimanual and constraint-induced movement therapy as soon as unilateral cerebral palsy is suspected, since the benefits outweigh the risk of harm from unused neuroplasticity windows and false-positive diagnoses.7
Treatment Sessions
Over the next six weeks, Nuru and I worked to apply these recommendations through 6 treatment sessions, both in-clinic and in-home,8 with the hopes of increasing her independence with mobility, access to her environment (namely her home), and participation in meaningful play. Interventions used to work toward our goals included:
- Helping the child into a quadruped position to promote weight bearing through the right hand/arm.
- Encouraging creeping on hands and knees to give the child another option to navigate her environment (in addition to butt scooting).
- Setting up functional tasks to promote bimanual play and reaching with the right hand/arm.
- Setting tasks to promote standing with decreasing levels of support.
- Providing gait training with a four-wheeled walker with a seat.
Education
Education of the parents was critical, as Davina would need to frequently practice targeted skills in her natural environment to maximally influence both brain and body development, and the parents were eager to implement home programming.9,10 This kind of invested family support was not unusual. In fact, I observed families in Tanzania to be much quicker to get involved with the care of their loved ones than families in the United States. I realized the importance of caregiver education because both medical and rehabilitative care is not easily accessible for many in the country, so families were eager to learn to carry out the rehabilitation strategies at home.
For example, when Nuru and I were working with a 71-year-old woman, it would not be uncommon for her daughter, son-in-law, and granddaughter to also be at the appointment. Family members and friends who joined their loved ones were invested, asking questions, getting involved physically, and providing emotional encouragement and support to their family member. In the beginning of the clinical experience, I was intimidated by all these family members and friends watching me, mostly due to my own insecurities as a developing clinician. After a while, I realized this was not about me at all, but about them and their interest and engagement in their loved one’s care.
Motivation and Creativity
Davina displayed significant progress toward all her goals over the 6 treatment sessions. She was very motivated to begin walking, and quickly caught on to using the four-wheeled walker like a gait trainer. Because she really seemed to enjoy the new-found independence in upright exploration, her family had a child-sized walker built for her (Photo 5). Through observations in our treatment sessions and conversations with her parents, Nuru and I also thought Davina would benefit from ankle-foot orthoses (AFOs) for added support with standing and walking. Her parents were able to obtain a set of AFOs at a nearby hospital (Photo 6). She also displayed significantly-improved tolerance to bearing weight through her right hand/arm, and her parents did a great job motivating her to play with toys with both hands (Photos 9, 10).
Results
By the time it was time for me to leave the country, Davina was able to play using both hands, stand independently, and take 3 to 5 steps unsupported and independently. This progress was very exciting to her parents, as well as for Nuru and me. In the months following my clinical experience, I remained in communication with the family and received periodic updates and videos. About 6 months after I left DCMC, I received videos of Davina independently transitioning from the floor to standing, walking around her living room, and kicking a ball.
Photo 5: Davina’s walker
Photo 6: Davina standing with bilateral AFOs donned
Photo 7: Parallel bars at the physiotherapy clinic
Photo 8: Davina her mother, Winnie, and Mitchel during a treatment session
Photo 9: Davina engages in bimanual play during a treatment session
Photo 10: Davina sits unsupported during a treatment session
Reflections on the Sociocultural Aspects of the Clinical Experience
From the moment I landed in Tanzania, I quickly came to realize I didn’t have the option to lean on a group of peers for support. I felt like an outsider in a way I never have in the United States. For the first few weeks, I felt myself acting cautiously, and in a calculated and guarded way that I never have before. I felt a visceral, deep-seated feeling of being unsettled and ungrounded. My sense of belonging had been challenged. This had nothing to do with the people at DCMC, as they were nothing but welcoming and quick to help me feel included and supported. As I settled in, I appreciated being welcomed into the hospital, and experiencing the hospital staff turn from strangers to co-workers to friends. I grew to understand and appreciate the graciousness, trust, and friendships I developed during my time there.
However, the way in which I was treated during my clinical experience caused me to reflect on the way certain aspects of my identity preceded me. More specifically, my identity as a white, American male with blonde hair, blue eyes, and a Midwestern accent seemed to override my identity as a student. This assignment of status somehow meant I must know things, whether I possessed the presumed knowledge or not. Nuru would frequently turn to me and ask for my thoughts and opinions on a patient through the lens of a colleague, vs. a clinical instructor quizzing their student. I would also get asked questions by physicians and nurses in a manner I wasn’t accustomed to during my clinical rotations in the United States.
It was odd to simultaneously feel internal waves of uncertainty, self-doubt, and being overwhelmed as I worked to create my identity as a clinician, while externally being expected to share my thoughts and opinions at a level I felt I hadn’t yet earned. It felt, at times, like my opinion was valued more because I was a white, American male than based on the knowledge I possessed or the merits I carried. Because I was coming from America, I felt an unspoken expectation to bring new knowledge or a better way of doing things. This position of status/power was not one I sought out, but one I was granted and that preceded me. The power dynamics with respect to certain aspects of identity: male/female, white/black, American/Tanzanian, and student/professional were constantly on my mind. I was aware of the historical context of the white “savior” role in Africa and did not want to come across this way.
Taking Responsibility
This experience required me to take ownership and responsibility for my thoughts and actions. It also encouraged me to remain aware of the power dynamics around me, and to be constantly assessing and understanding my place in them. In times where I didn’t know the answer, I would fall back on the current evidence and the ‘first, do no harm’ mindset.
One part of the clinical experience at DCMC I really enjoyed was my relationship with Nuru, my clinical instructor. Nuru let me do a lot of hands-on work, while she did a lot of the communicating with and interpreting between me and patients—as a majority spoke Swahili, and I did not speak the language. I also needed a lot of guidance adapting to cultural norms that were unfamiliar to me. Both Nuru and other Tanzanians were very gracious when I made mistakes, understanding there was no ill intent behind them. When working with a patient, if I sensed surprise or confusion among the patient or their families, I learned to seek clarification and ameliorate confusion or distress. By paying attention to social cues and maintaining a posture of humility, I learned I could adapt and quickly correct culturally-insensitive behaviors.
Insights for Future Practice
I believe I will be able to translate this experience to my future clinical practice. When working with minority and marginalized populations, I will have a better appreciation of what it feels like to have a shaken sense of belonging, and the challenges of participating in a system that one doesn’t fully understand nor feel included within. I will also bring my understanding of the unearned status of authority that accompanies my identity as a white male in a clinical setting.
Final Thoughts
Leaving Tanzania, and specifically DCMC, was extremely bittersweet. On the one hand, I was excited to return home to see family and friends, and to be one step closer to graduating physical therapy school. On the other hand, I didn’t want to leave the people with whom I had developed relationships over the past several months. As someone who is very relationship-driven, the thought of being able to interact with my newfound Tanzanian friends one day, only to be 8,000+ miles away from them the next day, was difficult. I soothed my sense of loss with a deep self- assurance that I would return someday. This would not be the last time I intended to see my friends in Dodoma. I shared many goodbyes, and frequently settled on the departure as a ‘see you later’, to both the people and the country.
The success and meaningfulness of my clinical experience wouldn’t have been possible without the support and kindness from a multitude of people: to Nuru, for helping me feel settled, supported, and taken care of as a human, while also guiding and empowering me as a clinician; to Winnie and Dickson, Davina’s parents, for trusting me and allowing me to have my first hands-on experience working with a child through the lens of a physical therapy clinician (in training); to the entire DCMC staff, for allowing me to integrate myself into their hospital team and going out of their way to make sure I felt welcome. Thank you, Tanzania, for the richness you provided in such a short period of time.
Photo 11: Mitchel Fenrich, SPT and Nuru Mohamed, PT
Photo 12: Davina, her parents, Dickson and Winnie, Nuru, and Mitchel
References
- Pechak CM, Black JD. Proposed guidelines for international clinical education in US-based physical therapist education programs: results of a focus group and Delphi Study. Phys Ther. 2014;94(4):523-533.
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- Zuurmond M, Seeley J, Nyant GG, et al. Exploring caregiver experiences of stigma in Ghana: they insult me because of my child. Disabil Soc. 2022;37(5):827-848.
- Morgan C, Fetters L, Adde L, et al. Early intervention for children aged 0 to 2 years with or at high risk of cerebral palsy. JAMA Pediatr. 2021;175(8):846-858.
- Gannotti ME, Christy JB, Heathcock JC, Kolobe THA. A Path Model for evaluating dosing parameters for children with cerebral palsy. Phys Ther. 2014;94(3):411-
- Kolb B, Muhammad Harnessing the power of neuroplasticity for intervention. Frontiers Hum Neurosci. 2014;8:377.
- Nithianantharajah J, Hannan AJ. Enriched environments, experience-dependent plasticity and disorders of the nervous system. Nat Rev Neurosci. 2006;7(9):697-709.
About the Author(s)
Mitchel Fenrich, PT, DPT
Mitchel Fenrich is a pediatric-based physical therapist where he primarily works with children with autism. He is a 2022 graduate of the University of Minnesota Physical Therapy Program where he now regularly serves as a lab assistant in the Pediatric course series. He holds a Bachelor of Science degree and a certificate in Global Health from the University of Wisconsin. During his physical therapy training, Mitchel spent time working with a local clinician in Dodoma, Tanzania. In his spare time Mitchel enjoys spending time with family and in the outdoors.
Corri Stuyvenberg, PT, DPT, MA
Corri Stuyvenberg is a Board-Certified Clinical Specialist in Pediatric Physical Therapy with over 25 years as an early intervention, multi-disciplinary team member. She completed her Certificate in Infant and Early Childhood Mental Health and has received her Endorsement® in Infant Mental Health. She is an Assistant Professor in the Division Physical Therapy at the University of Minnesota Medical School, primarily instructing pediatric physical therapy coursework. Corri is also a PhD Candidate in Rehabilitation Science at the University of Minnesota. Her research explores associations between qualities of parent-infant relationships and infant motor development in both term and pre-term infants.
Amanda Sharp, PT, DPT, PhD
Dr. Sharp is the Associate Program Director, Director of Student Affairs, and an Associate Professor in the Division of Physical Therapy at the University of Minnesota. There, she directs a series of courses related to professional development with an emphasis on historical and contemporary issues related to practice. She emphasizes self-awareness, reflection, and advocacy, striving to ensure students consider the complex role of clinical practice, seeing beyond a diagnosis or treatment plan to truly engage with their clients. Dr. Sharp is an educational researcher with a PhD in Higher Education from the University of Minnesota. Her research centers on disability diversity in physical therapy education and she is a regular consultant to students, colleagues, and other professionals on ways to support disability diverse learners in healthcare education. She further retains an active role as a research collaborator with a team focused on the long-term development of clinical educators.
This work is licensed under a Creative Commons Attribution 4.0 International License.
Table of Contents
Congratulations to Doctor of Physical Therapy Student, Caitlin Miller (George Washington University), finalist of the annual Student Essay Contest, co-sponsored by the American Counsel of Academic Physical Therapy (ACAPT) and the Journal of Humanities in Rehabilitation (JHR). The seventh in an annual series, this national contest offers a creative opportunity to ignite critical reflection in Physical Therapy students across the nation to support holistic approaches to patient care. This year’s essay prompt was:
Advances in AI technology are poised to transform the landscape of rehabilitation, raising intriguing questions about its impact on humanism in the field. How do you envision the integration of AI technology in rehabilitation impacting the essence of humanism in patient care? Discuss potential benefits and challenges in maintaining a compassionate, patient-centered approach while utilizing AI-driven techniques. Reflect on the role of empathy, personal connection, and tailored treatment plans in humanizing the rehabilitation process amidst increasing reliance on technological solutions. Draw insights from contemporary viewpoints on writing effective PT application essays, emphasizing the importance of weaving personal experiences and stories into your response to convey your understanding of AI’s potential impact on the humanistic dimension of rehabilitation.
Introduction
The use of Artificial Intelligence (AI) to improve patient care in physical therapy has enormous potential. AI may improve the efficiency and accuracy of diagnosis and prognosis while facilitating an evidence-based plan of care. If physical therapists utilize AI consistently and effectively, these positives may improve the standard of care across the profession. However, incorporating AI in patient care requires individuals to recognize that data used by AI reflects human bias.
Human Bias in AI
An example of human bias is the use of stereotypes; stereotypes enable us to process information quickly and categorize objects without becoming overwhelmed.1 However, stereotypes are harmful when they are applied to groups of people, such as around race, age, or gender.1 Stereotypes can lead to harmful beliefs—conscious or subconscious—about certain groups, and these beliefs can negatively impact patient care by affecting who researchers select to participate in studies, the health conditions that they prioritize, the interventions they investigate, and ultimately whether these interventions will be affordable or accessible for all people.
Some professionals fear that exclusively relying on AI would reinforce the results of research that reflect human bias and remove or diminish the humanistic dimensions of care. Research that uses AI may not accurately represent factors such as a patient’s race, age, or gender, and could be lacking for certain health conditions. If practitioners allow this information to guide treatment at the expense of centering each patient’s individual values, experiences, and needs, the humanistic aspect of care may be diminished.
To protect the role of humanism in physical therapist-patient relationships, the information AI provides within the context of research and clinical care ought to be approached thoughtfully and cautiously. This information ought to be used as supportive data, alongside evidence-based methods of clinician evaluation, as well as with consideration of the specific needs, experience, preferences, and expectations of our patients.
Humanistic Care: Mirroring
The humanistic dimension of care is demonstrated by physical therapists’ ability to mirror our patients. Mirroring is a term to describe what happens when a person interacts with another person by actively listening, extending empathy, seeking to understand, and believing in the inherent value of the other person. Student physical therapists learn to make eye contact with patients, to sit close, without a computer screen between us, and to ask questions mindfully, listening attentively to their responses while maintaining awareness of each patient’s demeanor and nonverbal communication.
Human beings have a profound capacity to connect with and understand each other, and this connection is the first step to mirroring. The second step occurs when a patient recognizes that a clinician has truly seen them by observing how the clinician listens, speaks to, and regards them. What is uniquely human about these exchanges is the capacity to connect with another person and reflect a level of witnessing and understanding back to them.
To effectively mirror our patients, physical therapists must regard each patient as an individual with a unique history and life experience, without allowing bias or assumption to diminish understanding. How a person experiences pain, grapples with physical limitations, grieves a life-altering diagnosis, values their work and social roles: each of these aspects of a person’s life is important to acknowledge and honor.
Being Present
When physical therapists encounter a patient about whom we may possess bias related to their identity, it is even more important that the practitioner slow down, recognize the bias, and make concerted efforts to make clinical decisions based upon the individual’s needs, goals, and expectations, as well as evidence-based clinical judgment, rather than preconceived notions based on erroneous stereotypes or assumptions. Practitioners can challenge biases by paying attention and recognizing when we are making assumptions based on past experiences or ideas, and redirect our perspectives and thoughts toward a place of humility and curiosity. To bring the uniquely human ability of mirroring each other to physical therapy, clinicians must be present with patients, and open to understanding and prioritizing the diverse array of possible experiences, needs, and expectations being presented to them.
The profession of physical therapy typically enables one-on-one time with patients, offering a unique opportunity for the relationship between patient and physical therapist to deepen. The guidance and collaboration between a physical therapist and patient can be transformative if practitioners are mindful of personal biases and assumptions, and center the patient’s experience and needs while carefully incorporating information from AI to guide patient care.
Conclusion
Leveraging AI to improve patient care in physical therapy may lead to excellent outcomes, especially if physical therapists continue to prioritize understanding patients as individuals, as well as recognizing and challenging the inherent bias in the data used by AI. Clinicians using AI should mindfully consider how to effectively and ethically integrate information that AI provides with the information the patient provides. Only the patient holds the wisdom of their life experience, needs, goals, and expectations. Incorporating the patient perspective, alongside AI-generated information as a complement to clinical judgment, into the care of each individual, is crucial to preserving humanism as central to the therapist-patient relationship.
AI Statement: I did not use AI in the writing of this personal narrative because I value my own process of writing and rewriting as I form and edit my work.
References
- Kahneman D. Thinking, Fast and Slow. Farrar, Straus and Giroux; 2011.
About the Author(s)
Caitlin Miller, SPT
Caitlin Miller, SPT is a first-year Doctor of Physical Therapy student at George Washington University. She graduated with the Class of 2017 from Georgetown University with a double major in Theology and Government. She relishes the joy of movement in her own life as a competitive ballroom dancer and instructor, and her passion is to support and guide her patients on their journey to achieve the movement goals that give meaning and joy to their lives.
This work is licensed under a Creative Commons Attribution 4.0 International License.
Table of Contents
Congratulations to Doctor of Physical Therapy Student, Michaela Magpile, SPT (Columbia University), finalist of the annual Student Essay Contest, co-sponsored by the American Counsel of Academic Physical Therapy (ACAPT) and the Journal of Humanities in Rehabilitation (JHR). The seventh in an annual series, this national contest offers a creative opportunity to ignite critical reflection in Physical Therapy students across the nation to support holistic approaches to patient care. This year’s essay prompt was:
Advances in AI technology are poised to transform the landscape of rehabilitation, raising intriguing questions about its impact on humanism in the field. How do you envision the integration of AI technology in rehabilitation impacting the essence of humanism in patient care? Discuss potential benefits and challenges in maintaining a compassionate, patient-centered approach while utilizing AI-driven techniques. Reflect on the role of empathy, personal connection, and tailored treatment plans in humanizing the rehabilitation process amidst increasing reliance on technological solutions. Draw insights from contemporary viewpoints on writing effective PT application essays, emphasizing the importance of weaving personal experiences and stories into your response to convey your understanding of AI’s potential impact on the humanistic dimension of rehabilitation.
Introduction
Freshly moved into my dorm to start my first semester as a Student of Physical Therapy, I spoke to my friend over bowls of pho at the closest Vietnamese restaurant, after we had taken a dance workshop in the city. “I feel like I know my ‘why’ so acutely,” I said between mouthfuls of noodles. “I feel like I choreograph because it’s the most authentic way I can connect with another person.” I laughed at my own banality. Unlike other art forms, dance had always felt the most personal to me.
As someone who creates as a choreographer and dancer, I get to be both the speaker and the speech, the artist and the art. Creating in this way, from and for my own body, I can communicate with my audience through an art form that is characteristically human and that has existed long before the development of modern technology. Simply the act of dancing, too, requires few tools outside of our own bodies. It doesn’t require the possession of a musical instrument, nor a pen, nor even music. Like the practice of physical therapy, dancing only requires one’s physical body, and in general, all external tools are optional.
Now, as I enter the second semester of my graduate program in physical therapy and observe the integration of artificial intelligence (AI) technology into society, I have a greater appreciation for the similarity between artists who prioritize authentic connection with their audiences and clinicians who prioritize the soulfulness of the patient-provider relationship; making art and providing patient-centered care both seem to stem from genuine, human-to-human communication, regardless of the use of external tools.
Messy but Necessary
One could argue that because AI was developed by humans, that whatever art or plan of care it generates is proximal enough to human authenticity to be effective. But it is the messy, variable nature of humans that cannot be reduced to mere algorithms. It is from this mess of feeling and experience that the most sincere and effective conversations can be had, whether they be in the context of art or patient care.
How many degrees of separation from humanness are needed for a piece of art to lose its authenticity? At what point does the use of AI in clinical practice start to compromise the impact of the patient-provider relationship?
AI as a Useful Tool
AI is often framed as a complementary tool, as opposed to a replacement, for artists and clinicians alike. Although it has the potential to be highly powerful in ways that simulate human intelligence, it may be helpful to view AI as a tool, in the same way as a musical instrument, a pen, or even music is viewed, as a complementary tool or adjunct to certain forms of art. If a dancer can use music as a tool to support their work and still be considered a real artist, so too should a clinician be able to conscientiously use AI and still preserve the essence of humanism in their practice.
I imagine that AI could be helpful in synthesizing and summarizing the results of various clinical studies to assist with the creation of treatment plans, or, when a list of symptoms is pasted into an interface, that it could be useful in helping clinicians more quickly reach an accurate physical therapy diagnosis. This may allow clinicians to more effectively engage in evidence-based practice.
However, relying solely on AI to make clinical decisions sidelines the value of human-to-human conversation when the provider and patient usually have an opportunity to collaborate on the plan of care. The development of a treatment plan is highly dependent on the patient’s specific goals, concerns, and lifestyle, and ignoring the unique nuances of their situation, in many ways, displaces aspects of their humanity.
Finding a Balance
Instead, for example, clinicians can use AI to develop a sample treatment plan, while also allowing their critical thinking skills, effective conversations on patients’ personal factors, and their past clinical experiences to inform their decisions. In this context, the clinician is the artist using technology as their tool.
Empathy, creativity, and the inherent subjectivity of the human experience are admittedly time-consuming themes to address and thus, they are often dismissed in a capitalist society. However, the principles of humanism are essential to the work of rehabilitation professionals, and understanding the limitations of AI in its ability to account for the diversity of patient experiences is critical for optimizing quality of care.
Society is yet to see the point at which this use of AI becomes excessive and maladaptive, and this boundary will likely be debated over time of implementation.
Nonetheless, one point will consistently hold true: that the purest forms of empathy and art can only come from something that possesses a soul. Human nature is the raw material that no tool can replace; it is the muse for which AI can only ever imitate.
Conclusion
Once I am a fully-licensed physical therapist, I hope that I can use my skills to thoughtfully employ the correct tools in the most effective way, while still honoring my humanity. Like the art of dance, the act of simply caring for and connecting with another person does not require the presence of a musical instrument, nor a pen, nor music, nor even AI.
And reflecting on my motivation to pursue this profession and of my appreciation for the complexity of the human experience, I am reminded of my ‘why’ so acutely: I value the unique opportunity that physical therapy presents to engage with another’s soul.
Acknowledgement of AI Use: I did not use AI to assist me in writing this essay because it is a tool that I did not consider to be necessary to create this work. Not every piece of choreography calls for music.
About the Author(s)
Michaela Magpile, SPT
Michaela Magpile, SPT (she/her) is a dancer, choreographer, and first year Doctor of Physical
Therapy candidate at Columbia University Vagelos College of Physicians and Surgeons. She
graduated in 2022 with a Bachelor of Science in human biology and a minor in business from the
University of California San Diego. Her experiences in the San Diego dance community and
being exposed to the various health concerns of that population have led her to pursue a career in
physical therapy, and she hopes to leverage her education and passion for the humanities in order
to grow as a more effective ally to her future patients. Outside of class, she enjoys attending
Columbia’s Narrative Medicine workshops, volunteering at the student-run clinic CoSMO and at
Alvin Ailey American Dance Theatre, working as an English language tutor, learning from her
favorite choreographers in the city, and curating obnoxiously specific playlists on Spotify.
This work is licensed under a Creative Commons Attribution 4.0 International License.
Table of Contents
For me, as a child, contentment arrived in the form of a pencil and paper. I drew pictures throughout my childhood. I continued to draw occasionally through college, but time limitations and other commitments led to a nearly 10-to-15-year post-grad absence from drawing. One afternoon while sitting on the porch with my family, I noticed a petunia had fallen onto the table from a hanging basket. I had a pencil nearby, so I picked it up and began to sketch. I noticed at first it was challenging to create an accurate representation of the contours and contrast of the flower petals, but gradually I was able to get back in the ‘zone.’ I shared my drawing with my family and heard myself describing how I translated my vision of the petunia to paper. It was this ability to connect with others through art in a unique, relatable way that made it so rewarding, and I was motivated to continue engaging with this familiar creative process.
Bridging Art With DPT Instruction
In my experience, I have also seen how art can have a substantial impact on the viewer in several ways, from drawing out various emotions to creating a means for deeper discussion or understanding. Hence, I set out to explore ways to bridge art with my current role as a core faculty member in a Doctor of Physical Therapy (DPT) program. In my quest for bringing art into my professional life, I thought about the physical therapy (PT) profession and some of the aspects that make it unique from other health disciplines. One concept that stood out was the many ways physical touch, or tactile perception, are utilized when performing the duties in PT. I decided to direct my art to the concept of physical touch as a foundation of trust between the patient and clinician.
Illustrating Trust Through Touch
In formulating ideas to illustrate the construct of trust through physical touch and the nuances of physical touch in PT practice, one scenario stood out. In this image that I created (Figure), the clinician provides light hand hold while the patient maintains a single limb stance—communicating the idea that trust is an extension of physical touch, and vice versa. The physical therapist’s open hand with light touch demonstrates warmth and confidence in the patient while still being available to physically support the patient if needed.
In order to interpret the subtle changes in a patient’s response during a dynamic clinical scenario such as this, one must appreciate the nuances, intent, and value of physical touch in this context. During this intervention, the patient trusts the prescribed exercise will help them reach their goals in a manner that maximizes benefits while simultaneously minimizing risk. By varying the amount of touch during the intervention, it displays the physical therapist’s confidence and trust in the patient as the patient gains independence as part of the rehabilitation process. The decision-making process of when and how to use physical touch during patient care is an important learned skill, and this drawing helps to encourage clinicians or students to consider its application and desired outcome.
Formulating the Image
I recall that as I was completing this drawing, there were several decisions that needed to be made. Initially, I was going to provide a detailed representation of the hands only, while leaving the other objects vaguer (gait belt, clothing, etc.), as I thought: 1) a focus specifically on the aspect of physical touch would resonate differently with the viewer, and 2) I had never drawn clothing in great detail before! The clothing, although somewhat technically difficult, became one of my favorite aspects of the drawing, as it adds a layer of texture and movement that otherwise would have been absent. This decision, and the reward it produced, adds motivation to take more risks during the creative process in the future.
Although I have never sculpted, the process of charcoal drawing, blending, and removing/adding contrast makes me think there are some similarities with sculpting. There were parts of the drawing that initially did not turn out how I had intended, but the ability to modify and ‘sculpt’ certain parts of the drawing allowed flexibility to take certain creative risks to a degree. One example, again, was the clothing. The pants were initially quite dark throughout, which made it difficult to discern and appreciate the details of the folds/tension of the fabric. I decided to lighten the fabric by removing some of the charcoal with the intent to allow the viewer to notice the position of the lower extremities with greater ease. This flexibility that accompanies charcoal drawing is one aspect that makes it an enjoyable medium to use in this way.
Visible Thinking
To better appreciate how this artwork might inform one’s teaching/practice, I met with several DPT students to garner their perspective. We met virtually as a small group and went through the Visible Thinking process of ‘See, Think, Wonder’ from Harvard University.1 This strategy encourages students to carefully observe what is in front of them, make thoughtful interpretations and express their viewpoints, and create a sense of curiosity and inquiry.
Among medical learners, the use of visual thinking strategies may improve several attributes relevant to clinical practice, including our skills in observation, interpretation, and critical thinking;2-5 tolerance for ambiguity;6 fostering of empathy;6 and development of a sense of wonder.7 Developing wonder among medical students has been promoted due to its several potential benefits, such as fostering the delivery of humanistic patient care, developing a commitment to lifelong learning, and encouraging innovation.7,8
Student Insights
After a brief period of quiet viewing, the students discussed their observations of the artwork. The first theme that emerged was the notion of helping (from the physical therapist), but also trusting and allowing the patient to use assistance as needed. This concept was further explored by the supportive hand hold; the patient wearing a gait belt, but it’s not being used for support by the physical therapist; and the positioning of the physical therapist in front of the patient versus directly to the side or behind. Some felt the scenario reminded them of a dance, where one partner would lead while the other followed.
The concept of trust was mentioned on several occasions, even without the students knowing the title of the artwork. The students also pointed to the lack of facial cues and having to rely on the patient’s body posture to appreciate various qualities of this task. Was this task challenging? Enjoyable? Engaging? Hearing reflections through the lenses of DPT students helps to inform my teaching by encouraging me to adapt based on their current level of understanding, and how their questions or perspectives may evolve over time as they are introduced to diagnoses, rehabilitation techniques, and experiences from clinical education.
One aspect of the artwork that was noticed among the students is the lack of a visual background or setting for this patient-clinician encounter. Honestly, there was not much intentionality behind this, but as I spent more time with the drawing and hearing the student feedback, I believe this allows the viewer to imagine this scenario occurring in a variety of settings (outpatient, hospital, etc.), so the viewer is not limited in their interpretation by setting alone. The lack of background, along with other features in the drawing, may contribute to the sense of wonder and its relevance to clinical practice as discussed earlier.
Clinical Questions
After having time to sit with the drawing, the viewer may begin to question the reason, or diagnosis, for the patient being in PT, and why the patient is specifically performing this task. The viewer scans for clues in the drawing that may help fill in the necessary details to lead them down one diagnostic path versus another. The mystery around the patient’s condition also encourages the viewer to recall various patient presentations discussed in the classroom or observed clinically, in order to develop a working hypothesis when assimilating various pieces of information from the patient’s history and examination. One of the aims of this drawing is to ignite the critical thinking process, which is often threaded throughout DPT curricula.
Conclusion
In conclusion, my reintroduction to drawing has been rewarding on multiple levels, most notably the enhanced ability to connect with others and share ideas. As an educator, artwork allows me to better understand the student perspective through facilitated discussion—offering insight to adapt my teaching practices to meet their learning needs and provide an opportunity for further conversation in clinical reasoning. I am grateful to have found a creative outlet that allows me to explore concepts in clinical practice and education from a different perspective, including the construct of trust through physical touch in physical therapy practice.
References
- Harvard Graduate School of Education. A Thinking Routine – See, Think, Wonder. Available at: https://pz.harvard.edu/sites/default/files/See%20Think%20Wonder_3.pdf. Accessed March 1, 2024.
- Agarwal GG, McNulty M, Santiago KM, Torrents H, Caban-Martinez AJ. Impact of Visual Thinking Strategies (VTS) on the analysis of clinical images: a pre-post study of VTS in first-year medical students. J Med Humanit. 2020;41(4):561-572. doi:10.1007/s10912-020-09652-4
- Naghshineh S, Hafler JP, Miller AR, et al. Formal art observation training improves medical students’ visual diagnostic skills. J Gen Intern Med. 2008;23(7):991-997. doi:10.1007/s11606-008-0667-0
- Dolev JC, Friedlaender LK, Braverman IM. Use of fine art to enhance visual diagnostic skills. JAMA. 2001;286(9):1020-1021. doi:10.1001/jama.286.9.1020
- Schaff PB, Isken S, Tager RM. From contemporary art to core clinical skills: observation, interpretation, and meaning-making in a complex environment. Acad Med. 2011;86(10):1272-1276. doi:10.1097/ACM.0b013e31822c161d
- Bentwich ME, Gilbey P. More than visual literacy: art and the enhancement of tolerance for ambiguity and empathy. BMC Med Educ. 2017;17(1):200. doi:10.1186/s12909-017-1028-7
- Zheng D, Yenawine P, Chisolm MS. Fostering wonder through the arts and humanities: using visual thinking strategies in medical education. Acad Med. 2023:256-260. doi:10.1097/acm.0000000000005519
- Evans HM. Wonder and the clinical encounter. Theor Med Bioeth. 2012;33(2):123-136. doi:10.1007/s11017-012-9214-4
About the Author(s)
Brandon Ness, PT, DPT, PhD
Brandon Ness, PT, DPT, PhD is an Associate Professor and serves as the Assistant Director of Curriculum in the Doctor of Physical Therapy Program (Boston, MA) at Tufts University. Brandon’s research interests include health humanities, disability and accessibility in physical therapy education, and educational technology. Brandon believes that art allows him to connect with others in a unique, relatable way while exploring concepts in physical therapy practice and education. He has always enjoyed seeking opportunities for innovation in teaching/research, and the visual arts offer a creative, engaging means to understand different perspectives.
This work is licensed under a Creative Commons Attribution 4.0 International License.
Table of Contents
Congratulations to recent graduate of Northwestern University’s Doctor of Physical Therapy Program Hannah Sy, the winner of the 2023-2024 Student Essay Contest, co-sponsored by the American Counsel of Academic Physical Therapy (ACAPT) and the Journal of Humanities in Rehabilitation (JHR). The seventh in an annual series, this national contest offers a creative opportunity to ignite critical reflection in physical therapy students across the nation to support holistic approaches to patient care. This year’s essay prompt was:
Advances in AI technology are poised to transform the landscape of rehabilitation, raising intriguing questions about its impact on humanism in the field.
How do you envision the integration of AI technology in rehabilitation impacting the essence of humanism in patient care? Discuss potential benefits and challenges in maintaining a compassionate, patient-centered approach while utilizing AI-driven techniques. Reflect on the role of empathy, personal connection, and tailored treatment plans in humanizing the rehabilitation process amidst increasing reliance on technological solutions. Draw insights from contemporary viewpoints on writing effective PT application essays, emphasizing the importance of weaving personal experiences and stories into your response to convey your understanding of AI’s potential impact on the humanistic dimension of rehabilitation.
Note: This essay prompt was generated by ChatGPT when given the prompt: “Write a physical therapy student essay prompt on the following topic – how will AI technology impact humanism in rehabilitation?” OpenAI. (2023) ChatGPT Aug 18 version. [Large language model] https://chat.openai.com/chat
We have chosen the topic of artificial intelligence and machine learning for our 2023-2024 essay contest prompt in recognition of the tremendous opportunities this technology offers in our world, as well as the profound societal implications. It is precisely in this space of creative tension that the skills we gain from the humanities provide critical insights to help us interrogate, embrace, and ultimately shape what this revolutionary technology is asking of us as humans.
Introduction
If I asked Katniss Everdeen in The Hunger Games what her mission in life is, I imagine I would receive an arrow straight to the heart. Without food, while fending for her life, her entire faculty is geared solely toward survival, and life mission statements would most understandably not be on her priority list. On the other hand, I imagine Princess Rapunzel in Tangled would have an answer in a heartbeat. She leaves the comfort of her tower in search of belonging and greater meaning to her life, made possible because all her basic needs are met.
With each need met, assumedly, one’s capacity to meaningfully engage with themselves and the world around them increases. This phenomenon of having the ability to reallocate one’s mental, emotional, and intellectual capacity depending on circumstance, parallels the philosophy of Maslow’s hierarchy of needs and offers an imaginative lens to envision the potential impacts of artificial intelligence (AI) in rehabilitation.
AI and Humanism in Patient Care
What if we imagined the impact of AI on the essence of humanism in patient care through Maslow’s philosophy? In a physical therapy rendition of Maslow’s pyramid, I believe humanistic patient-centered care would be the pinnacle. Humanistic care sensitive to a patient’s values, cultural background, and preferences is essential for quality patient care.
Imagining the potential impact of AI on humanistic patient care would not be feasible without reflecting on the current state of humanism in patient care. Prior to physical therapy school, I was a rehabilitation technician in a high-volume outpatient orthopedic clinic. Repeated emotional stresses due to managing a high patient load, resulting in burnout was so prevalent that therapists tried to convince me not to pursue the profession. As a third-year student physical therapist I have navigated numerous health systems in various clinical settings. The aggregate of my clinical experiences informs my perspective that the essence of humanism in patient care has long been and continues to be threatened by productivity standards and documentation load. The intricate and systemic interplay of reimbursement rates and health system business models impacts the lived experience of physical therapists, and most often shows up in the form of burnout.
The prevalence of physical therapist burnout is good reason to consider that perhaps the essence of humanism in patient care is already at stake, and AI can serve to increase the humanistic capacity of clinicians. The potential for AI is boundless in rehabilitation, and even the most pedestrian of applications would offer benefit to a clinician’s humanistic patient care. Consider that if AI could generate an evaluation or treatment note based on objective inputs that I provide, my documentation burden would decrease. In turn, my time, attention, and mental capacity that would have been allocated toward documentation would be newly available to be directed toward being present with patients.
My History as Guidance
During the initial weeks of my long-term clinical rotation in acute care oncology, I found that I did not have the mental bandwidth to fully engage with patients on a personal and emotional level. Managing lines and tubes took my full attention, so I had trouble simultaneously talking with the patient to take a subjective exam. I did not attempt to get to know patients during sessions because observation of their gait pattern and guarding appropriately took the entirety of my focus. I failed to acknowledge family members in the room because I was intent on accomplishing everything on my mental checklist. As tasks became second nature with each week, my ability to engage thoughtfully increased. I became available to offer a listening ear without attempting to rush out of a session when patients wanted to verbalize their emotions. My ability to read the room increased, resulting in the ability to gauge if there was a witticism I could offer to make a patient smile. My needs of mastering psychomotor tasks, safety, and clinical judgment had to be met before I gained the capacity to be fully present and empathetic.
AI’s Potential for Cultivating Humanistic Care
Using AI-driven techniques in rehabilitation does not challenge humanism of patient care but rather the skill of patient care. My education equips me with the skill and knowledge to develop personalized treatment plans. With its processing power, AI can also develop tailored treatment plans for each patient when provided with the necessary data. Computer intelligence’s ability to perform an aspect of my role as a Doctor of Physical Therapy may render my skills redundant, but it would not render me less human.
The advantage of AI in patient care is its ability to solve complex problems with its capacity to process copious amounts of data. Patients, however, are more than data points. They are people with unique personalities, dreams, and stories. Thoughtfully engaging with these aspects of who patients are requires human connection and makes their care humanistic. Artificial intelligence as it currently is, has no capacity to develop relationships. So long as this is true, AI can only address the levels underneath the pinnacle of a physical therapist’s hierarchy of needs, and thus increase their capacity for humanistic patient care.
Statement regarding use of AI in authoring this essay:
Since this piece is subject to human review, I chose to forgo the use of AI out of the belief that my writerly voice wields more effective storytelling power to express my personal narrative.
About the Author(s)
Hannah Sy, PT, DPT
Hannah Sy, PT, DPT is a recent graduate from Northwestern University’s Doctor of Physical Therapy Program. She graduated from Azusa Pacific University with a Bachelor of Arts in Allied Health, and her liberal arts undergraduate education informs her curiosity and love for pursuing knowledge in both the humanities and sciences. She is the recipient of the Advanced Healthcare Practice Scholarship Program Grant from the California Department of Healthcare Access and Information and the Edna Foster Wright Scholarship from Northwestern University. Her clinical interests include cancer rehabilitation, and professional interests include leadership development and creating cultures of value and belonging. In her free time, she enjoys reading, longboarding, making pottery, crocheting, and conversing over a cup of coffee.
This work is licensed under a Creative Commons Attribution 4.0 International License.
From Individuals With Aphasia and Brain Injuries to Poets: How the Book I Don’t Think I Did This Right Came to Be
Table of Contents
I Don’t Think I Did This Right is a collection of poems by individuals throughout the United States with stroke-based aphasia and traumatic brain injuries (TBI). This group of poets, who meet weekly through Zoom, is known as the Thursday Night Poets. The Zoom event developed out of local aphasia and brain injury groups. The Chippewa Valley Aphasia Group has provided weekly community aphasia group programming since 1997. This group was founded by Mayo Clinic Health Systems–Eau Claire (MCHS-EC) speech-language pathologists (SLPs) Mary Beth Clark and Tom Hintgen. In the late 2000s, when he took a position at the University of Wisconsin–Eau Claire (UWEC), Dr. Tom Sather began providing weekly services through the Blugold Aphasia Group. In 1999, Mary Beth Clark and Dr. Jerry Hoepner, both employees at MCHS-EC at the time, started the Mayo Brain Injury Group, which has offered monthly meetings ever since. After moving to the University of Wisconsin–Eau Claire in 2008, Jerry founded the Blugold Brain Injury Group, which offers bi-monthly meetings to individuals with acquired brain injuries on opposite weeks of the Mayo Brain Injury Group. As UWEC is a teaching institution, graduate SLP students co-facilitate each of these groups. What follows is the story of how a group of people learned about the power of poetry.
Sparked by the Pandemic
The COVID-19 pandemic created a need for additional connections and space for expressing the sense of isolation that members of brain injury groups were feeling. Individuals in our aphasia groups were feeling the effects of social isolation imposed by the pandemic as well. So, individuals from the Chippewa Valley Aphasia Group and Blugold Aphasia Group were invited to join individuals from the Blugold Brain Injury Group and the Mayo Brain Injury Group. The facilitators began to seek out additional opportunities for members to connect virtually, outside of our regular meetings. As a first step, Jerry invited Douglas Kidd, a TBI survivor and advocate who had started a support group in the Toledo, Ohio area and written about recovery and living with TBI, to speak. He came to an adjunct virtual meeting to describe his experience—and just happened to share some of his poetry.
It was clear from his poems that writing poetry about his experience was cathartic and healing. Inspired by his use of poetry as a way to express his inner struggles and renegotiate identity, group members were asked if they would be interested in a three-week poetry workshop. A handful of members responded with an unresounding, “Sure, we’ll try that. Why not?” response. Most of them had either never written poetry before, or it had been many years, even decades since they had. Their idea of poetry was something less accessible, less personal, than what they were about to encounter.
How It All Came Together
In 2017, speech-language pathology professor-researcher-clinician Dr. Michael Biel presented at the Aphasia Access Leadership Summit in Florida about a poetry workshop he co-facilitated for individuals with aphasia. After hearing this presentation, Jerry Hoepner, Tom Sather, and Mary Beth Clark invited Michael to the 2018 Chippewa Valley Aphasia Camp. Michael agreed to come, but only if he could bring Brendan Constantine, a Los Angeles-based poet and Michael’s co-facilitator. That set the wheels in motion. At camp, Brendan had a unique ability to acknowledge the competence of campers with aphasia and make poetry feel so accessible.
Fast-forward to 2020, and Jerry reached out to Brendan to see if he would consider co-facilitating a similar workshop for individuals in the brain injury and aphasia groups. Brendan enthusiastically agreed; the first workshop date was set for Thursday, October 29, 2020. The plan was for two to three Thursday evening sessions. At the end of the second week, Brendan asked, “Does anyone want to do this again next week?” The response was a resounding “Yes.” Each session for the next several weeks ended with the same question from Brendan and the same response from the attendees. At some point, we implicitly decided that this would become an ongoing program. From that point forward, the Thursday Night Poets became a bonified group. Now, individuals living throughout the United States participate in the group.
“We Don’t Think We Did This Right…”
There’s a story behind the title of the first book by the Thursday Night Poets. Each week, Brendan would end our sessions with homework for the following week. Often, he shared an inspirational poem or two, provided a short, written prompt, and discussed possibilities. True to his inner acknowledging and revealing competence principles, he also shared that if this prompt didn’t inspire them, they could ditch it and write whatever they wanted. The following week, we began sessions with sharing poems related to the homework prompt.
A common, almost universal, response was: “I’ll share, but I don’t think (or I don’t know if) I did this right.” It became such a habit that each time a poet said it, we expected something quite amazing. Not getting it right meant not doing it the exact way that Brendan expected or wanted, or how a ‘real poet’ would respond to the prompt. Rather than rejection, the response to the homework was instead an embrace of something unique, unexpected, and beautiful. The poets began to learn that there is not one ‘right’ way to write poetry, there are many. They began to realize that their challenges with word finding, formulation of syntax, and memory deficits were strengths when it came to poetry. In fact, several poets commented on the fact that poetry helped them to overcome those challenges.
Finding New Identities
As the group members relaxed, the pressure to use a specific word or phrase in a particular way decreased and they often found the words and phrases they thought were missing. It was like watching identities bloom and re-emerge. Every time we thought the group had produced their best poem, we marveled when they returned the following week having expanded their potential to meet new heights. Students were also transformed, as their initial apprehension about how poetry related to therapy was replaced by an awe of the power of poetry to reveal the growth in our poets’ ability to express themselves each week. They too were learning how to acknowledge and reveal competence and how to foster engagement in something meaningful and identity-changing.
From Ragtag Attendees to Poets
In the world of aphasia rehabilitation, Aura Kagan (1998) coined the concepts of acknowledging and revealing competence.1 Acknowledging competence is the practice of communicating to an individual with aphasia (or anyone for that matter) one’s recognition of their knowledge, capability, and intelligence. Likewise, revealing competence involves taking the perspective that the individual with aphasia has meaningful things to share, and when they encounter struggles expressing their thoughts, the communication partner ensures a means of response by supporting other modalities of expression (e.g. writing, written choices, drawing, gesturing, etc.). These are core principles of counseling and communication that well versed speech-language pathologists employ with any individuals with communication impairments.
At the outset, most of the attendees were not poets—perhaps with the exception of Douglas Kidd. Some individuals only initially attended for something to do during the pandemic, which we all expected would be ending soon anyway. Some were just there to listen and learn. Brendan had a way of engaging attendees in the beauty and accessibility of poetry. Brendan also teaches poetry to teenagers at the Winward School in Los Angeles—an independent, college preparatory school for grades 7 to 12. He clearly knows where to begin when selecting poems that feel approachable, not stuffy, or off-putting, to novice learners and would-be poets. Brendan has an uncanny ability to match his poems to where learners are at, beginning with approachability and gradually pushing the bounds as learners grow. This pairs well with his ability to infuse confidence, competence, and risk-taking values into his learners.
Acknowledging and Revealing Competence
In aphasia rehabilitation terms, Brendan acknowledges and reveals the competence of the poets. He adheres to these principles intuitively and as well as any trained SLP. Brendan’s ability to incrementally ramp up the level of challenge, to meet learners where they are, coupled with his ability to acknowledge and reveal competence, are central to the transformation attendees experienced as a part of Thursday Night Poets. A few months into our weekly meetings, the regular attendees were hooked. They were now card-carrying, full-fledged poets. This was infused into their identity, and they began to refer to themselves as poets.
Brendan’s Perspectives: A Poet, a Teacher, a Kindler of Words
One of the reasons I teach poetry is that it keeps me teachable. This is because it scares me to death. I’m a career author with several books to my name and a body of published work, and yet it’s fair to say that the apprehension I felt on entering my first classroom hasn’t diminished for 25 years. Though it has changed some.
At the beginning, I mostly worried about embarrassing myself. Gradually, however, my frustrations matured into a genuine terror of wasting anyone else’s time. It’s been my experience that most people who sign up for a poetry class already have something they need to express, something urgent. Even those students—of which I was one—attracted by the romantic identity of ‘poet,’ likewise carry a surplus of unexpressed feeling. Thus, the notion that I might inadvertently ‘ruin’ poetry for someone else—by making it inaccessible, or worse, boring—is a distressing one.
But, as I say, it’s perhaps this vulnerability that keeps me from becoming too set in my opinions, promotes surprise, lets me change my mind. I know several professors who are emphatic that all the great ideas have been taken and that no one, certainly no student, has anything new to say. I can’t help but wonder if this attitude is a hazard of being too comfortable. So, while I still panic before every class, by the end, I’ve learnt something.
Such has been the case with the Thursday Night Poets for the last three years. The writers in this group routinely inspire me to put aside what I think I know about poetry. They show me again and again its potential for clarity and empowerment. And perhaps most important of all, they remind me who poetry is ‘for.’
If your only experience of poetry is its most public face—that is, if you pick up a poetry magazine or go to a reading—you might conclude that its practitioners are rather remote and cliquey; only poets tend to read it or attend events. One reason for this is the fact that the estimated audience for poetry in the country fluctuates between 5% and 11%. The number of Americans currently excited about Pickleball is 20%.
Another isolating factor is that with such a limited audience, the only way to make a career of it is to claim to be a professional. But how exactly does one qualify as a professional empath? In my opinion, such distinctions only serve to discourage. The truth—and the great lesson exemplified by the authors in this anthology—is that poetry belongs to anyone in need of an emotional vocabulary. Indeed, I say as much in my Foreword for the book.
As has already been emphasized, the Thursday Night Poets group is made up of writers who share an experience of aphasia or traumatic brain injuries. Their abilities to process language have been compromised in different ways, and yet, through poetry they have discovered a new means of expression, a new way to ‘speak.’ They render plane throughout this collection of what Paul Valery called the “language inside language.”
Another thing these poets demonstrate consistently is the authority granted by metaphor. For instance, in poems such as ‘My Hands Remember’ by Sheree Nelson or ‘The Ring’ by Rochelle A. Anderson, both poets show us a world where everything is capable of witness, from our hands to whatever they can hold or point to. And when the poet speaks on behalf of the phenomenal world, their words are unimpeachable. One might as well argue with the moon.
Let me be clear, I’m not a speech pathologist, nor have I made an organized study of either aphasia or TBI. However, since Fall 2020, I have watched astounded as a group of people who previously had struggled to make their hearts and hopes known, manifest clear and intuitive voices. Further, they now speak for each other. I do very little at our meetings now (!) but listen and learn.
Jerry: Creating I Don’t Think I Did This Right – and Beyond
I Don’t Think I Did This Right reflects the Thursday Night Poets’ early poetry work. Our poets, though proud of their book, often reflect on the growth and improvement they have sustained since its initial compilation. Creating this book was integral in forming the group attendees’ identities as poets. Some of the poems are reflections on their journey with aphasia and brain injury recovery. Other poems are simply expressions of other life experiences, or their take on one of Brendan’s prompts. As the poets began to explore and experiment with this mode of self-expression, they wrote poems that use different cadences, visual formats, phrasing, stanzas, poetry genres, and topics. This resulted in poems that are beautiful, sad, joyous, and introspective, providing a glimpse into the souls of the authors. Individual styles and voices emerged, which have carried on through the poets’ more recent works. It is also important to note that the creation of the book from the order of poems to the painstaking process of formatting and editing was done by the poets to ensure that it was a true reflection of their work. Having written a few textbooks myself, these tedious steps are akin to weathering a storm, a badge of honor. I’m so proud of the poets for their tireless commitment to the process of producing a book.
I’m happy to share that the Thursday Night Poets have released their second book, Poetry is Chocolate. This second volume illuminates the growth of our inaugural poets as well as introduces our newest members who joined the group after the first book was in production. Poetry is Chocolate is a collection of the poets’ reflections on the experiences of stroke and brain injury, recovery, and living with aphasia and TBI.
It’s remarkable how a simple idea can grow to something so significant. The Thursday Night Poets group simply created a space where individuals with aphasia and brain injuries could connect with one another, exploring poetry as a vehicle for self-expression. Brendan planted the seeds through his prompts, humor, and encouragement. He nurtured their awakenings as poets. My students helped to structure the meetings, balancing time between poetry writing and guiding the book project. This required a great deal of clinical skill in order to guide while keeping the poets in charge of decision making. Ultimately, the poets are responsible for the eloquent words. While at first it may feel paradoxical, asking people who have trouble expressing themselves to do just that through poetry, we learned that there is power in poetry.
Kathryn Paulson: From the Poet’s Perspective
Emily Dickinson once wrote, “I am out with lanterns, looking for myself.”
When I first read this line, I got goosebumps. I felt like Emily wrote that for me. Experiencing an acquired brain injury (ABI) has not been a blessing, but it has been an opportunity. One of the things that was stolen from me following my ABI was my identity. Today’s society teaches you that who you are is closely linked to what you do for a living. Prior to my ABI, I was a respiratory therapist for almost 19 years. After my injury, although I eventually returned to work as a respiratory therapist in a smaller hospital with fewer hours, I found that I could no longer do the job in a way that was important to me and still have any semblance of a life. It took me a while to figure that out. Poetry gave me an opportunity to rediscover. Myself. And language.
My life changed on December 20, 2016. I fell at home on my concrete driveway slipping on black ice. I sustained a skull fracture with a subarachnoid hemorrhage near the temporal lobe of my right brain. So began the journey to my lifelong recovery. Back in October 2020, our group, led by Jerry Hoepner, was able to explore the benefits of poetry for people with acquired or traumatic brain injuries and aphasia. Poet Brendan Constantine, a Los Angeles based poet, along with speech language pathology student clinicians from UW-EC and Jerry, offered three online classes to explore the basics of poetry and how, with some prompting, individuals could write out their feelings, experiences, and their stories. We have met almost every week since then. I have even taken to teaching and moderating classes when other instructors can’t attend. Poetry is different from other writing because often, the rules can be broken. That definitely works to our group’s advantage. Brendan made it clear from the beginning that he treated our class no different than any of the other classes he taught. We were writers; we all just happened to have our brain injuries in common as well.
Reading and writing poetry has changed my life. It has changed my perceived identity. After my fall, my self-esteem, among other things, had taken a blow. I didn’t realize it then, but I felt lost. I was no longer a respiratory therapist. I was just Kathryn, Kathryn with a brain injury. I felt the change more than I let on, even today. I am gaining confidence and continue to tell my story to a wider and wider audience, realizing how many people in this vast universe our stories will help.
I have begun to heal in ways traditional therapy for brain injuries never touched. Poetry helps me understand myself better. Reading and writing poetry helps me quiet my chaotic mind. I read, see, and hear words in a distinct way now. I want my written words to positively affect others, both with brain injury and without. I still struggle with certain cognitive changes, headaches, and fatigue. I believe that will always be part of my life. But I refuse to let it be my whole life. I am now a poet. A published poet, as a matter of fact. Our group has now written two books.
Individually, I have also published “Coal Smoke” in Rattle (2022), “Empty Bottles” in TBI Hope and Inspiration (2022), and “Carry It With You” in Poets Choice (2023) in the Zest with Pets edition. Some of my poetry has been born of pain but reflects my strength. Some of my poems are quirky, some are just about ordinary things. Most of my poems have some story behind them.
Any individual with any type of conflict, be it ABI/TBI, PTSD, stroke, eating disorders, anxiety, depression, or abusive situations can benefit from writing. It doesn’t have to be poems. But if it is, the poems don’t need to be published in order to make them useful. The poems don’t even have to be ‘good.’ In fact, most of the poems I have written, I wouldn’t categorize as that (good). (What poet does think that?!) I have found solace in scribbling my feelings down after a hard day or a stressful event. I put it away and ignore it. When I feel like I can come back to it, I usually end up typing it out and that helps me process my feelings. I may edit those feelings into a poem, I may not, but I have those poems to prove to myself and others that it is possible to get through hard situations. I fight my evils with poetry. Poetry has taught me to fall in love with words, even those words I still lose today. It forces me to use other words and those other words can be what makes my poetry the strongest. I refuse to let my mind erasify my life.
ERASIFY
One thousand six hundred and ninety days ago
I didn’t realize immediately
the depth of my losses
how my mind
would erasify my life
References
- Kagan A. Supported conversation for adults with aphasia: methods and resources for training conversation partners. Aphasiology. 1998;12(9):816-830.
Table of Contents
Resources
To purchase the collection of poetry, I Don’t Think I Did This Right, click on the following link: https://www.biaw.org/books
About the Author(s)
Kathryn Paulson, Poet
My name is Kathryn Paulson. I am a seven-year TBI survivor. I fell on black ice, fractured my skull, and had a subarachnoid hemorrhage on the temporal lobe of my right side. My recovery has included some of the typical therapies, but when I started writing poetry in October of 2020, I began to heal in ways traditional therapy never touched. I feel seen, while regaining an identity as someone other than a person with TBI. Poetry helps me understand myself better and has allowed me to help fellow survivors. My poems have been published in Rattle, TBI Hope and Inspiration and Poets Choice. Along with the Thursday Night Poets, I have contributed to two chapbooks: “I Don’t Think I Did This Right,” published in 2022, and “Poetry is Chocolate,” published in 2023. We are currently working on our third book. With my work at the Brain Injury Alliance of Wisconsin (BIAW.org) I continue to be an advocate for brain injury survivors, families, and caregivers.
Brendan Constantine, Poet
Brendan Constantine is a poet and educator based in Los Angeles. He has written several collections of verse and his work has appeared in many standards, including <em>Poetry</em>, <em>The Nation</em>, <em>Best American Poetry</em>, and <em>Poem A Day</em>. He currently teaches at both the Windward School and with the Los Angeles County Museum of Art. Since 2017, he has been developing workshops for writers living with Aphasia and Traumatic Brain Injuries (TBI).
Jerry Hoepner, PhD, CCC-SLP
Jerry Hoepner, PhD, CCC-SLP is a Professor at the University of Wisconsin – Eau Claire in the department of Communication Sciences and Disorders. He teaches courses in anatomy and physiology, neuroanatomy and neurophysiology, acquired cognitive communication disorders, dysphagia, and counseling. Dr. Hoepner co-facilitates the Blugold Brain Injury Group, Mayo Brain Injury Group, Thursday Night Poets, and Chippewa Valley Aphasia Camp. His research addresses video self-modeling interventions for individuals with cognitive communication disorders, project-based interventions, aphasia camp outcomes, motivational interviewing, counseling methods and training, undergraduate research outcomes, course-embedded clinical experiences, and instructional pedagogies. He is a co-founder of the <em>Teaching and Learning in Communication Sciences and Disorders</em> journal. In 2022, he co-founded the ASHA SIG20 for counseling. Dr. Hoepner is the co-author of “Clinical Neuroscience for Communication Disorders: Neuroanatomy and Neurophysiology” by Plural Publishing. In 2018, he received the University of Wisconsin – Eau Claire, Excellence in Mentoring in Research, Scholarship, and Creative Activity. In 2020, he received the University of Wisconsin Systems Regent’s Teaching Excellence Award. In 2021, he was awarded Fellow of the American Speech-Language Hearing Association. In 2023, he received the Council of Academic Programs in Communication Sciences and Disorders Distinguished Contribution Award for enriching education in CSD.
Rupal M. Patel, PT, PhD
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This work is licensed under a Creative Commons Attribution 4.0 International License.
A Seat at the Table: A Reflection on Engaging Disabled People and Their Families in Research and Service Design
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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.
This work is licensed under a Creative Commons Attribution 4.0 International License.
The Case for Disability Justice in Physical Therapy Education and Practice
Table of Contents
Congratulations to Doctor of Physical Therapy Students Vanessa Lista, SPT (Neumann University) and Priyanka Bhakta, SPT (Emory University), finalists of the annual Student Essay Contest, co-sponsored by the ACAPT Consortium for the Humanities, Ethics and Professionalism (CHEP) and the Journal of Humanities in Rehabilitation (JHR). The sixth in an annual series, the CHEP-JHR Student Essay contest offers a creative opportunity to ignite critical reflection in Physical Therapy students across the nation to support holistic approaches to patient care.
This year’s essay prompt was:
“The American Physical Therapy Association (APTA) recently added the core value of inclusion to our profession’s Core Values, as efforts have increased to address diversity, equity, and inclusion (DEI) in clinical and educational environments. However, people with disabilities often remain in the margins during DEI-related discussions, and little consideration is given to the importance of the representation of individuals living with disability in our educational programs and professional clinical settings.
“Given our professional training and overdue efforts to address DEI across professional settings, what perspectives and/or key strategies could shape our profession to be more inclusive of individuals with disabilities? What can be done, both collectively and individually, to promote a culture of inclusion, belonging, and respect for persons living with disabilities within the field of physical therapy? Why do you believe these efforts will be effective? How will this effort pay off with improved patient care?”
In Spring 2021, I was both nervous and excited to begin filling out my application to physical therapy (PT) school. However, I was soon hit with a reverberating pang of disappointment and confusion when I realized I had to classify my minor in Disability Studies as “Other/Not Listed,” and my minor courses as “Special Topics” because the extensive drop-down menus had no options related to this field, despite it being incredibly relevant to PT practice. I couldn’t help but wonder why this focus was lacking in the application:
If a legitimate and growing academic field that has been developed by and for people with disabilities is not even recognized by the literal gatekeeper of the PT profession, is our profession truly prepared to meaningfully increase inclusion of people with disabilities within its educational and clinical spaces?
A New Focus on Advocacy: Disability Justice
This early experience did not deter me from joining the physical therapy profession; rather, it strengthened my desire to advocate for Diversity, Equity, and Inclusion (DEI) efforts related to people with disabilities within PT. However, in order for advocacy to become commonplace for all providers, I believe that clinicians and PT institutions as a whole must be challenged to truly contemplate ‘disability’ and its intersections with the field of PT.
As a Disability Studies student, I was introduced to Disability Justice, an anti-ableist movement-based ideological framework developed by disabled activists. This framework is built upon 10 core principles:
- Intersectionality
- Leadership of those most impacted
- Anti-capitalist politic
- Commitment to cross-movement organizing
- Recognizing wholeness of all individuals
- Sustainability
- Cross-disability solidarity
- Interdependence
- Collective access
- Collective liberation.1
The principles of leadership of those most impacted and cross-disability solidarity specifically call for prioritizing the insight and leadership of members of various impairment classifications and of all disability groups in any actions to increase disability inclusion and confront ableism—the system of oppression that is the basis for discrimination and prejudice against people with disabilities and people whose bodies or minds diverge from societally constructed norms.2
I believe that these specific principles, and this framework overall, offer the best means to challenge our profession to think about disability more critically and to ensure that inclusion efforts related to people with disabilities are truly appropriate, meaningful, and effective.
Disability Justice and PT
I first began to personally understand the power of applying Disability Justice principles to physical therapy while working in PT research and outpatient clinic settings. I had noticed that ‘disability’ was often understood and referenced by clinicians as being solely related to visible physical impairments. However, through my Disability Studies education, I had learned that many people with disabilities identify with the term ‘disabled’ as a social identity. I also learned that the broad disability community is inclusive of individuals with ‘invisible’ disabilities such as those living with chronic illnesses/pain, cancer patients and survivors, and neurodivergent individuals, among others.
I have found that sharing simple comments in any setting—clinical, academic, or otherwise—can help folks broaden and improve their perspectives of disability and accommodations, such as pointing out that everyone who uses eyeglasses and contacts are technically visually-impaired and that their glasses and contacts are assistive devices. Illuminating the diversity in disability and the accommodations we have come to naturally provide for some individuals can, in my experience, serve as an opportunity to underscore that as a society we already understand some accommodations as commonplace and that we must extend that same effort to others who are still facing ableism in its various forms. Thus, I believe that by bringing necessary attention within PT to the diversity within ‘disability’ serves to both bring the principle of cross-disability solidarity into DEI efforts and calls on us to take steps toward inclusion of people with all types of impairments and disabilities.
Disabled Folks in Leadership Roles
Leadership by the most impacted is a key principle of Disability Justice and underscores that in order for inclusion efforts in PT to be effective and truly meaningful, they must all be led by people with disabilities. This principle necessitates that individuals and professionals with disabilities, including disability advocates and disability justice activists, are called into our professional conversations to serve as leaders in the development and implementation of all DEI efforts across PT education and clinical settings.
Teaching Partnerships
One meaningful example of how this principle can be integrated into PT education is the University of Toronto’s critical Disability Studies core course for first-year PT students. This course includes equitable teaching partnerships with local disability communities enacted through small-group sessions for students with disability community members who develop, review, and revise content as well as facilitate disability scenarios grounded in their experiences that the PT students discuss in the sessions.3
Staff, Faculty, and Designer Recruitment
Additionally, recruitment of disabled individuals, activists, researchers, and clinicians to PT program staff and faculty would provide opportunities for individuals with disabilities to lead and enrich PT education and research. Furthermore, PT educational and clinic spaces should be prepared with input from disabled universal design consultants and stakeholders such as students, patients, and faculty in order to be maximally accessible and adaptable to the needs of all individuals, including those with sensory sensitivities to touch, sounds, and/or light.
This tenet also calls for expanding accommodation policies for disabled PT students; however, as reflected in an article4 published last fall in JHR, there are inherent tensions in accommodations for students in PT programs. This is yet another opportunity to call in disability advocates and disabled students to serve as leaders for the re-evaluation and potential expansion of accommodations in PT programs to ensure equitable and effective educational experiences for PT students with disabilities. By taking steps to center individuals with disabilities at the heart of our profession and educational institutions, patient care will also improve as these individuals may also use their lived experiences to lead efforts to combat ableism within PT institutions and practice.
Envisioned Futures
Ultimately, I believe that Disability Justice is a dynamic and powerful tool that should be adopted by individual clinicians as well as PT education, clinical, and professional institutions. By implementing Disability Justice into PT and prioritizing leadership by disabled folks, we can envision—and bring to fruition—futures for the profession and practice of physical therapy that better understand the diversity within disability, and that are truly more inclusive of people with disabilities.
References
- Berne P. 10 Principles of Disability Justice. Sins Invalid blog. Published September 17, 2015. Accessed December 18, 2022. https://www.sinsinvalid.org/blog/10-principles-of-disability-justice
- Lewis, TA. Working Definition of Ableism: January 2022 Update. Published January 1, 2022. Accessed October 27, 2024. https://www.talilalewis.com/blog/archives/01-2022
- Yoshida KK, Self H, Willis H. Values and principles of teaching critical disability studies in a physical therapy curriculum: reflections from a 25-year journey—Part 1: Critical Disability Studies Value Framework. Physiother Can. 2016;68(4):315-318. Doi: https://doi.org/10.3138/ptc.68.4.gee2
- Dhillon S, Moll S, Stroinska M. Accommodating students with disabilities in professional rehabilitation programs: an institutional ethnography informed study. J Humanit Rehabil. Published November 14, 2022. Accessed September 28, 2023. https://jhrehabredesign.ecdsdev.org/2022/11/14/accommodating-students-with-disabilities-in-professional-rehabilitation-programs-an-institutional-ethnography-informed-study/
About the Author(s)
Priyanka Bhakta, SPT
Priyanka Bhakta, SPT is a Doctor of Physical Therapy student in the Class of 2025 at Emory University in Atlanta, Georgia. She graduated with the Class of 2021 from UCLA with her Bachelor of Science in Physiological Science and a minor in Disability Studies. She is the current Senior Digital Graduate Editorial Associate for the Journal of Humanities in Rehabilitation. She is passionate about finding ways to integrate anti-ableism into physical therapy education and practice and hopes to integrate disability justice into the field of physical therapy and her future work as a clinician.
This work is licensed under a Creative Commons Attribution 4.0 International License.