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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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • jeannettevance1
    2 years ago

    Thank you so much for your article. I admire your strength. I was just diagnosed with RA about 6 months. My first bout with it was very bad, I couldn’t get out of bed or walk without major pain. I am a little better now and exploring the different meds to take. I do know my life has changed and every time I think this is to hard, I think of someone like you who has lived with RA for a long time. I had no idea RA was such a serious illness until I got it myself. I try to educate as many people as I can about the seriousness of RA. To many people have the idea that you can cure RA with diet and exercise and bless there hearts they do not know what they are talking about. I hope you got or you are working towards your degree. Having goals and dreams are so important. I was a high school teacher for many years and I would always encourage my students to reach for there goals and dreams. You are also a wonderful writer maybe you could write a book about RA. So many people need to know what’s it’s like to live with RA. Best of luck to you!!

  • Kelly Mack moderator author
    2 years ago

    Hi Jeannette, thanks so much for your kind words. I’m sorry to hear about your struggles with RA, but very much hope you have a good doctor and that treatment is helping. You are right in that many people do not know how serious RA can be. Hope that you find this website helpful for coping with this disease. Best, Kelly

  • Richard Faust moderator
    2 years ago

    Thank you so much for writing jeannettevance1. Sorry to hear about the diagnosis, but glad reading about individuals like Kelly helps you realize what a full life you can still have. I should point out that I am Kelly’s husband. You mention degrees and Kelly may not want to blow her own horn, but I feel no inhibitions about doing it for her. She was not only the first person in a wheelchair to attend her college, but also has a Masters in communication and is a high level communications professional. RA need not hold somebody back! I thought you might also like this article she did in the form of a letter to her younger self about all the things she would overcome, learn, and the life she could/would live: https://rheumatoidarthritis.net/living/talking/.

    You mention exploring treatments, please know that they have advanced dramatically in a short period of time. This article from our editorial team gives an overview of treatments, with links to more specifics: https://rheumatoidarthritis.net/treatment/. This additional article from Kelly looks at the evolution of treatments in her lifetime, with hope for what the future holds: https://rheumatoidarthritis.net/living/the-evolution-of-ra-treatments/.

    Finally, know that you are always welcome to come here for support and information. Taking care of the emotional you can be just as important as the physical (it is all linked). Glad to have you as a member of the community. Best, Richard (RheumatoidArthritis.net Team)

  • kat-elton
    2 years ago

    Thanks for a really well-done article. I relate to everything you said. As you so well stated the medical model has a hard time fitting people like us in to their equation. We have so many symptoms that belie explanation and since cure is probably not an option for some of us were not the most fun patience to work with I’d imagine. But just like you, that doesn’t play a part in my every day life, as all I do every day is to try to live as well as I possibly can, to give back when I can, and to always find a reason to smile. Thanks again!

  • Kelly Mack moderator author
    2 years ago

    Thanks so much Kat! You are right — all we can do is live our best life, every day! And give back when we can. 🙂 Sending hugs and support, Kelly

  • Lawrence 'rick' Phillips
    2 years ago

    The ADA has been a godsend to so many of us. I know when it was passed I was skeptical it would have meaning for people with disability. I need not have worried, The law has incredible meaning and I am so happy it does.

    Like yourself, I will never be cured either of RA or diabetes, I gave that up long ago. I am however interested in something so much bigger, the health of my grandchildren. Now that is priceless.

  • Kelly Mack moderator author
    2 years ago

    Thanks so much Rick! Really appreciate your kind words of support. Here’s to better health for the future! Best, Kelly

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