Me vs. the Medical Model
When I was diagnosed with rheumatoid arthritis at the young age of two years old I had no idea that I was also being drafted into a lifelong battle between the reality of living with chronic disease and disability and fighting the medical model of disability.
In 1990 when the Americans with Disabilities Act was signed, the nation awoke to a whole new understanding of the experience of disability. Basically, the whole of history had previously considered illness and health issues as a defect in the person. Disability was an experience to be ashamed of and managed through curing or hiding the person away. But this new law recognized that much of the disability experience is actually dictated by how we build our physical world and the attitudes of our society.
Ever since I was a young child receiving treatment and physical therapy for my RA, I felt this gap in understanding. I inherently understood that the challenges I faced were not only about my achy joints and growing physical limitations. My doctors were trying to cure me, but I was trying to learn how to live my life and thrive no matter my disability.
The medical model approach to disability basically sees people as diseases or conditions that must be cured or managed. It fails to recognize the person or the fact that people can have terrific lives, even while living with disabilities and illnesses. The most striking examples for me were all the doctors who gave up on me because I was not improving with my RA. When drugs didn’t work and my slow decline and increasing joint damage continued, they would throw up their hands and shuffle me out the door.
But I didn’t just stop having RA! And my disability did not evaporate by being ignored! So my family and I had to figure things out largely on our own. Sure, I continued seeing doctors to manage my RA treatment, but our struggles extended so much further. I had to figure out how to live my life with a disability and find solutions for achieving the vision I had for quality of life.
I still remember my childhood rheumatologist and how he was a different sort. He saw me as a person, a little girl with a future. And while I don’t remember the specific conversations, I do remember him speaking with my parents about seeking quality of life for me. As I grew into a teenager, I pondered what this meant and what I would have to do to move towards maximizing quality of life.
Every individual’s path is different, but for me it was about finding a new normal with RA. I knew I wanted to go to college and that it meant finding a place that would support my disability and need for wheelchair access. I knew that I wanted to work, which meant not only finding a job I enjoyed and could do, but also one in a place that would embrace someone with physical disabilities. Working also meant finding a place to live with ready options for getting to and from my job. These needs were not just about finding the ramps (or a physically-accessible environment), but also the people who could accept (and maybe even appreciate) difference.
I will never be cured. If they find a way to stop RA, I will still have nearly 40 years of joint damage and resulting disabilities. I will always be someone living with a disability, but that is the key point—I not only aim to live, but to thrive. The medical model has nothing on me.
Have you managed RA fatigue better than you used to?