Yesterday, I was at a conference about cerebral palsy, mostly attended by medical professionals like surgeons who have spent their lives researching my disability. They understand it through the lens of medicine and science, considering how to make spines straighter and muscles looser. I admire them immensely and I can say without a doubt that many of the surgeries and therapies they suggested and developed have given me a better life. As someone whose life began as a 30- week- old premature baby on a respirator, I owe these great minds for keeping me alive. But as one of the only people with CP in the room, being in this medical environment was peculiar. So much of medicine is about “pushing the limits”, “defying the odds”, and “fixing the body.” Yet there I was in the back of the room, seated in a power wheelchair and unable to walk just as medicine had predicted for me. I am a quadriplegic. “The most severe form.” The reality that all these doctors work to outwit with science. It is very difficult not to internalize the feeling that there is something “wrong” with me when all the medical rhetoric is focused on reducing the incidence of people like me. Through the scientific lens, I represent a “poor outcome” which seems so ridiculous because I have a very happy life. I love my wheelchair and the soft buzz it makes. I love the way my disability has connected me with a diverse tribe and I love that it will put even more people I wouldn’t have met otherwise in my life. I am more than “OK” with the life and the body I have. But I still think about how difficult it is as a young person finding her identity to balance the value of medical intervention with value of self-acceptance. It seems that these concepts are at odds with each other: one founded on “fixing”, the other on “embracing.” It has not been easy to find a place of peace between the two, but doing so has helped me to live a beautiful life. Oftentimes, I think doctors get wrapped up in the science of fixing and do not pause to consider that hearing too much talk about what is wrong with your body can really hurt your heart. So, if I had the chance to address those doctors, this is what I would say.
I admire you. I see your compassion. I see the long hours you work and the time that you sacrifice to help me. You are some of the smartest people I’ve ever met and I am grateful for your devotion. The surgeries and therapies you have recommended over the years have helped me. But there are some other things I need you to know. I need you to look at my life not only in terms of science, but in terms of humanity. I need you to understand that medical intervention isn’t everything, and that life with CP can be great, even if the person never learns to walk. Even if the classification next to her name is “severe.” I need you to know that my relationship with CP is not a simple matter of black and white. It causes some things that are less than desirable, like painful spasms and achy joints. However, the strange duality is that it gives me so much good. My sense of humor. My ability to adapt. Lifelong friends. It is no stretch to say that CP has at least in part created the person I am. So, as you're working, think of this and think of it often. Not everything needs to be “fixed.” I imagine that you have been taught that the ultimate goal is to have the fewest traces of my disability as possible. You may be surprised to know that my primary goals are to manage pain and to do activities of daily living in the easiest, safest way possible even if that means that my muscles and bones are very far from fixed.
By all means, I look forward to your ideas about how to help me but remember that helping does not always look like what you first believe it does. Sometimes, I may need you to lengthen a muscle or straighten a bone. But other times, and much more often, I need you to tell me and tell all of us that our disabled bodies are “OK”. To tell us we are worthy of celebration just as we are. To tell us that our crooked hips are part of our design and that even if we find ourselves marked as “severe,” our lives are a “good outcome.” I hope that you will keep thinking about muscles and bones, but I hope that you will also think about how to make the world more inclusive for us as we are. Things like making buildings accessible, making doors easy to open, and working to end the attitudes that lead to discrimination against us in work and school. Many of these social inequalities are significantly more troubling than CP itself. Most days they feel like the real obstacles. I need you to balance your instinct to fix our bodies with an effort to make life easier and more comfortable in the bodies we have right now.
Yesterday, there was a lot of talk about “imagining the future of CP.” Some of you may believe that the future I see is one in which cerebral palsy no longer exists. But that is not it. When I close my eyes, I see a future where all people with disabilities can go to school without struggle or have a job of their choosing. I see a society where no one is bullied or isolated because of a disability and anyone can access any building. I see a world where people can be independent, but get help when they need it. Where disability and poverty are no longer linked. You are in that future, too, Doc, helping people manage their pain and live long, happy lives. When I close my eyes, I don’t dream of a place where I don’t have cerebral palsy. I dream of a place where it doesn’t matter if I do because either way, I know I will have equal opportunities.
(Image is my power wheelchair headrest, decorated with various buttons. In closest focus is a black button that says "What you do matters" in white lettering)