Encountering Ableism in Healthcare

When I was being diagnosed, my initial MRI revealed that I had long lesions over several sections of my spinal cord. While I knew nothing about the disease I was about to be diagnosed with, I understood that any damage to my spinal cord was bad news. It meant I would eventually need a wheelchair. But at 36 years old, I was in no way ready to live my life from a chair. Hearing this news, some people in my circle began actively avoiding me and eventually (thankfully) drifted out of my life.

After being misdiagnosed with multiple sclerosis, a specialist, frustrated because their treatment wasn’t working, said I should “just get a wheelchair and be done with it.” I fought back tears on the ride home. This was their way of saying they’d given up on me, which was devastating.

A decade later, I had a different outlook. I’d hit a wall in coping with the high level of pain from NMO, arthritis, osteoporosis and exhaustion from being chronically anemic. I had more bad days than good and struggled to keep up with my busy life. Climbing stairs was getting harder. Standing in my kitchen for more than five minutes caused painful back spasms. Grocery shopping was so exhausting that by the time I got to the cashier, heart pounding, I’d be sweating and nauseated. I’d abandon the checkout process to my husband and search for a place to sit down. I felt my sense of independence and normalcy slipping away. Something had to change, so after much consideration, I decided it was time for a wheelchair.

I trusted the first person on my care team that I approached. I was sure they would support my decision. When I broached the subject, I mentioned that I thought it would be best for me to get a power wheelchair because I had no feeling in my arms and hands due to spinal cord damage from NMO. I was afraid I’d get my fingers caught in the spokes of a manual chair and break them. I also have significant arthritis in both shoulders so I couldn’t manage wheeling a chair long term.

Their response was “Oh, but your husband could push you.” 

“But he works long hours and I want my independence!” I replied. 

“Do you really think that if you’re in a wheelchair, you should be out by yourself?” they asked.

I sat there stunned, unable to believe what I was hearing. For the next week, I couldn’t get this conversation out of my head. 

After I’d had time to recover from this troubling experience, I approached a second member of my care team. They very quickly shut me down with  “Oh, you’re just frustrated.” and that was that. I very rarely ask for help and I couldn’t believe that the one time I was clearly asking, no one was listening. I sat with that for a long while.

Finally, I gathered up the courage to ask a third person. I took a deep breath and once again made a case for getting a power wheelchair, steeling myself for another rejection. Instead their response was, “Yes, we will start the paperwork right away.” It was as if my request made perfect sense and they had just been waiting for me to be ready. I felt like I could finally breathe.

It took me a long time to feel ready for a power wheelchair and to drum up the courage to ask for what I needed. It was shocking to be met with outright ableism by the very people whom I was counting on to support and advocate for me. I internalized the negative messages I’d received from those around me about how using a wheelchair was “giving up,” that I would no longer be me, that I was a burden and that it wasn’t OK to be a mobile user. (A mobile user is someone who still has the ability to walk, but requires the use of a wheelchair to improve their quality of life.)

Fortunately, in the years since I was diagnosed, I have grown as a person and I’ve been able to work through some of the ableism I’d internalized. I got to a place where my quality of life overrode any sense of shame I had about needing the use of a wheelchair. I came to view a wheelchair as a tool for independence and freedom. It enables me to go about my life in less pain, which in turn allows me to live a fuller, happier life.

I wish that attitudes about disability were different and that I could have had the support I needed from everyone on my care team. This experience opened my eyes to how others perceive me. It’s definitely had an impact on the level of trust that exists between us. 

***

Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.