Story: Maintaining My Health with a Disability
Or: How to Find Health-Supporting Spaces in an Inaccessible World
Photo Description: Author in her motorized wheelchair wearing sweatpants, sneakers, and a colorful blue and purple shirt with short brown hair and glasses. She is smiling slightly as she stretches into an adapted side-angle yoga pose.
As a person with a disability and multiple chronic conditions to manage, it can get complicated to manage my health and maintain it so that I don’t have an unnecessary health emergency and end up in the hospital or worsen my conditions for the long term. Besides just the inherent complexity of my health, I have to manage all this around inaccessibility and ableism.
One example is that I have experienced a few times instances of going to urgent care for something basic like an infection and have been turned away and told to go to my primary care physician because they don’t want to treat a disabled person. (I don’t know why? I am not that scary unless you make me angry!)
Here’s the thing: I don’t go to urgent care for fun and giggles. I go when my regular doctors are unable to see me due to full schedules and I know I have an issue that needs immediate attention or will significantly worsen if it is not addressed quickly. One of these times I ended up in the emergency room. Another time I had to be hospitalized after going to the ER. All for lack of a basic screening where I just needed antibiotics, which I had explained because I know my history and body well.
For some reason the sight of my wheelchair threw off these medical practitioners at urgent care. Highly-trained doctors and nurses assumed I couldn’t just need antibiotics for an infection and that instead I needed “special” care. (If anyone finds out what “special care” is, can they let me know? It’s a mystery to me!) This is a result of ableism, or assumptions about people with disabilities and our health needs being different than other human bodies — which is untrue.
Even Disabled People Need to Maintain Their Health
It may be silly to have to say this, but even disabled people need the tools to maintain their health. I would argue even more so because my health is more complex due to managing multiple conditions, some that arose with time from my juvenile rheumatoid arthritis (following many years of damage to my body), some with aging, some as a function of my long-term disability, and so forth.
I spend a lot of time thinking about my health and working on it. Not just medical appointments with a rotating list of specialists (primary care, rheumatology, podiatry, orthopedist, dermatology etc.), but also nutrition, exercise, and quality rest.
My husband says that I am one of the hardest working people he knows when it comes to exercise. First, because it is harder for me to even do any exercise. And second because I do it regularly and challenge myself to keep my body as strong as possible. I am constantly fighting against my disease and disability to maintain my strength as much as I can.
Finding Accessible Health Spaces
It hasn’t been easy to find the medical practitioners who have (relatively) accessible offices and equipment. Even more important is finding those with the mindset I need: not of curing my conditions and disability, because this is not possible (and its a waste of time, energy, and money to maintain this fiction), but of working with me to manage my health, conditions, and disability.
In order to maintain my health, I need accessible health spaces like exercise classes, therapists, pools, gyms, and so forth. This has been the biggest struggle for me — to find places outside medical facilities (which already have many accessibility problems) that are both physically accessible and welcoming.
Years ago, I discovered yoga and it was incredibly helpful for maintaining my strength, limited range of motion, and managing my chronic pain. It was so beneficial I used to travel 45 minutes each way to get to a class every Saturday for gentle yoga, which was slower paced and where I learned adaptations for my practice. After a couple years I had learned a lot and wanted to step up my yoga practice with additional challenges, so my teacher suggested I try the next level up. I signed up for the new class and was so excited to try it out, but when I arrived the new teacher took me aside and told me I was not welcome, that I needed more attention than she could provide, that I should leave and go back to the other class. Despite my protests that I knew adaptations and would just do what I could, she did not relent and I left very disheartened and discouraged (about both exercise and humanity, to be honest).
I had believed that yoga and exercise were for everyone. But I learned from this and other experiences that many people don’t agree. Although I complained to the studio management, I never received an apology — only a refund for the classes that I had paid for. I never went back, not even to my old class. I didn’t want to pay money to an organization that did not want me or appreciate me.
Over the years I have tried different yoga and exercise teachers and found better attitudes, more open and encouraging ones. But I find myself always being wary, always waiting to be rejected and excluded.
Forging My Own Health Path
Even before my negative yoga experience, finding exercise programs was difficult. Gyms never seemed accessible (even the gym in my building, which I pay for in my monthly condo fee, isn’t accessible!) and I didn’t know how to use the equipment with adaptations that would work for me. I would buy DVDs or video recordings to learn different exercises. Periodic sessions of physical therapy were also helpful for learning beneficial exercises.
But it never felt cohesive and I would go for months not exercising because I lacked the knowledge and confidence to do it myself. It makes me sad to look back on those years, how much I feared exercise and felt so ignorant about doing it. I think about the lost strength and motion, about how the rheumatoid arthritis was grinding at my joints and I was missing a tool to help sustain myself.
It’s a hard thing, but I came to realize that I had to forge my own health maintenance plan. The doctors I visited could prescribe medication, physical therapy, and surgery — but no one was able to guide me on the day to day living with my conditions and disability. So, I struck out on my own, meeting with various nutritionists, reading up as I could find resources, and exploring various kinds of exercise.
It’s taken a long time, but I am proud of what I have learned and how I have found exercise that I like, eating habits I can enjoy, and a better management of my overall health. Video recordings and virtual exercise classes that have grown much more numerous in their variety and offerings during the pandemic have been a huge boon. I love being able to do regular exercise in my own home and not have to brave the judgement or rejection of others because my camera is off and no one knows I am disabled. But in the classes welcoming of disabled people I can turn on the camera and confidently participate.
Although my health journey continues (and I am sure will present challenges or turns in the road), I feel more stable and confident because I have a strong foundation and numerous resources. Whatever challenges may come, I have more confidence that I can handle them and that I can maintain my health as much as possible with both my conditions and disability.
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Thank you for sharing this and I’m so sorry about that yoga teacher. I’m a big fan of yoga and I firmly believe it’s for EVERY body and I’m angry on your behalf!
What you said about the extra importance of maintaining your health when disabled and chronically ill really resonated with me. I work SO hard within my limits to take care of my body - because if I don’t I decline that much quicker. People really don’t understand how hard we try to care for ourselves (and how hard it can be to access care as well).
Wow! Kelly, I am in awe of how you keep keeping on. I hope you will collect these pieces and others in a book or some more-21st-century medium one day, to benefit people of all abilities.