This interview was done with Camarie Shepard (she/her), an Occupational Therapist in Pittsburgh, USA. She completed her Master’s degree in Occupational Therapy (OT) at the University of Pittsburgh and is currently running her own private practice.
Camarie has bilateral leg spasticity and mild myopathy affecting all four limbs. She has double vision, is hard of hearing, and has an auditory processing disorder.
She has always had leg spasticity, but it only started seriously impacting her mobility the year she started graduate school.
In terms of mobility aids she most often uses a forearm crutch on her right side. For days where more support is needed she uses a LifeGlider (which she describes as a reverse walker for adults). Occasionally she also may borrow a manual wheelchair or an electric scooter.
Camarie’s practice provides telehealth, community-based services, and special education advocacy. Additionally they participate in public speaking engagements. Although she primarily does telehealth, she also does group activities with a local group home. She sees a wide range of ages and diagnoses such as Autism, ADHD, and Dysgraphia (to name a few). She is fluent in American Sign Language allowing her to see Deaf clients, and she ensures her practice is queer-friendly.
In the following interview Camarie discusses her experience with graduate school and professional practice in relation to her disabilities.
Graduate School
How did having a physical disability shape your grad school experience?
The biggest thing that it made difficult was fieldwork. We had to really think about what
fieldwork placements would be a good match for my skills and my access needs.
The pandemic greatly shaped my experience. When classes had to go remote faculty
checked in on me to see if I needed anything. I actually thrive in remote classes because I am able to have optimal positioning for my spasticity as well as optional access for my
vision and hearing. The biggest challenge came when we needed to figure out fieldwork
placements for me prior to the vaccine being available. My disabilities make me high risk for negative covid outcomes. We struggled a little in figuring it out but in the end we came up with a plan for telehealth that worked really well for me.
“The biggest barrier I faced was other people’s perception and institutional inflexibility.”
What type of barriers did you face in grad school?
The biggest barrier I faced was other people’s perception and institutional inflexibility. I
often was in the position of having to prove what I could do. Often for me, the best
accommodation is just flexibility. I need flexibility with absences to accommodate doctors appointments and flexibility with deadlines to accommodate pain flare-ups.The lack of flexibility in a lot of graduate school programs really is a barrier.
Did you feel supported in grad school? By faculty, other students, etc…
I felt very supported by my fellow students and in particular by other students with
disabilities. They were the ones who told me not to quit when I wanted to give up.
Having to advocate for yourself constantly is frustrating and exhausting. Once I developed a rapport with my faculty it became easier. I remember in particular when we were struggling with figuring out a fieldwork placement for me, my advisor decided to take a strength-based approach and came up with a customized program that played to my strengths. It ended up being the best experience of my degree.
Is there any advice that you would give to students with physical disabilities applying for or in school now?
Never trust anyone else to know your rights. I conducted some research while I was in
school about the experience of OT students with disabilities and one of the common themes that we found was students being told inaccurate information about their rights.
You will need to know your rights and advocate for yourself. Keep a good paper trail. Have discussions in email rather than in person or on the phone. Talk to your office of disabled student services before you have a problem rather than after. Insist on your
accommodations even if a professor says “it’s not that hard”. Keep track of your absences. Know what to do if a professor tries to deny you an approved accommodation. Find your disabled peers and find disabled mentors because sometimes you really just need to talk to someone who has been in your shoes.
Do you feel accessibility (in general) has changed between since you started school?
I was really lucky to be on a DEI curriculum committee during my time in graduate school. I was also really fortunate to speak to a disabled student who came in immediately after I graduated. I was able to talk with them about their experience. It would seem that they had a much smoother experience than I did and I am hopeful that maybe I played some small part in making that happen.
Professional Practice
Can you talk about seeing clients in person vs. Telehealth?
When I am seeing clients in person I need to do some extra homework to find out what the space we are going to be working in is like. I need to know if the space has stairs because that affects which mobility aid I choose to use. If I am working with a new place I need to think carefully about how and when to disclose my disability. For example I provide services to a group home and while the facility isn’t fully accessible, they are very welcoming and willing to make accommodations work.
How does having a disability AFFECT your practice?
I am far more affected by the ableism of other people than I am by my disability. Having to justify my role in my field and explain my value is frustrating. Every time I apply for a new state license I have to go through an extra step because I am disabled. I am currently licensed in two places and fighting with a third state that wants me to disclose private health information so they can determine if I am fit to practice in their state. I believe this is an unfair burden on disabled practitioners because our non-disabled colleagues are not subjected to this violation of privacy. If a self-attestation of ability to practice is sufficient for non-disabled practitioners it should be sufficient for disabled practitioners as well.
How does having a disability INFORM your practice?
I believe it informs my practice in that I often have a better idea of what my clients are going through. I have the ability to help them when they need to advocate for themselves. When it comes to spasticity, I’m better able to identify triggers and ways to minimize the spasticity, compared to peers without that lived experience. For example I had a family that I was working with that didn’t realize the colder weather could affect their child’s spasticity.
“I am far more affected by the ableism of other people than I am by my disability.”
Do you feel supported by your employer? What do they do right / what can they improve?
I am very lucky to have the privilege to go into private practice and be my own boss. This
was a choice I made primarily because it allows me better accessibility.
What would you like other health professionals to know about disabled health rehab workers?
I am your colleague and I am a resource to you. I have the lived experience of being a disabled person. I will see things you missed and I will think of things you wouldn’t have. Instead of viewing me as the person who needs help transferring patients, see me as the resource I am. Remember, transferring patients is not what makes our field special.
What would you like patients to know about disabled health rehab workers?
You can be honest with me about what you are going through. I am your safe place to be upset, to be angry, to be frustrated. You don’t have to worry about upsetting me, offending me, or mincing words around me. We are a team and we are going to figure out how to help you navigate the world the best way you can.
Camarie’s practice can be found at @PassionFlowerFamilyServices on Facebook and Instagram.
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