I want to talk about my own experience of disability and, in a broader sense, about the disability rights movement (which I think is a really under-recognized civil rights movement).
I guess the first thing I want to say is that I’ve struggled a lot with how to present this subject and how to talk about it, because I want this to be a personal talk about myself and my experiences, but I don’t want it to be only about me — I want to talk about broader issues in society and maybe help you think a bit differently about disability than you might have in the past.
That said, I guess I’ll start by telling you about me. If you’re curious about the medical details, I have a rare neuromuscular disorder; I was born with it, and it has affected me in pretty much the same way my whole life, with the exception that in my teens I developed some breathing issues I hadn’t had before and, as a result, a lot more fatigue.
But before I get to that, I want to touch on what it was like for me growing up. I grew up with a pretty obvious disability in a family where we never talked about disability. When I think back on it, I’m not sur e why my parents approached (or, rather, failed to approach) the subject in the way that they did, but I think that they were uncomfortable dealing with it — in the way that disability makes most people uncomfortable — and so they figured that since I seemed to be managing well enough, they could shove it under the carpet. The result, unfortunately, was that I internalized their discomfort with the subject, and of course, since I lived in a society that gave me lots of negative images about disability that I didn’t have any way to counter, I became deeply ashamed of myself. My highest goal in life was to appear “normal” (and I imagined that was possible, even though it clearly wasn’t) — for instance, in high school, I absolutely refused to use the school’s elevator, and instead I struggled on a daily basis with four flights of stairs.
Things changed for me towards the end of high school, when, long story short, I had a major health crisis (some of which had to do with my disability, and some of which was the result of incompetent medical care). It turned into a three-year-long ordeal during which I constantly felt sick and exhausted and couldn’t do much except lie in bed. Because of all this, I had to take a year off before going to college.
That was by far the most difficult, excruciating year of my life. I was completely isolated, physically miserable, unable to get doctors to listen to me or take me seriously, and had no way of knowing if I would get “better” and be able to go to college, or if I would feel the way I w as feeling for the rest of my life. Long story short, I eventually diagnosed myself after doing a lot of internet research, found a rogue doctor who would prescribe the treatment I wanted, and slowly but surely improved (though some long-term physical effects from that period remain, and I still have a lot more fatigue now than I did when I was younger). I managed to go off to college and, as you can all see, I’m now managing (somehow) to live in a foreign country.
But really, the most important thing that happened to me during that year was that I was finally forced to look disability in the face and reconceive the way I thought about it — and this is perhaps the most important part of my story, because it’s where my personal experience ties in with the points I wan t to make about the larger disability experience.
- During that year at home, I didn’t have much to do, and I so I spent a lot of time online, and eventually I came across the online disability rights community, where I was introduced to what’s called the “social model” of disability.
- The social model posits that disability isn’t (or isn’t only) some kind of inherent deficiency within a person, but rather, it’s created by the interaction between a person and the society that fails to properly accommodate them.
- The social model sees disability not as an aberration from what is “normal,” but as part of the diversity of human experience.
- The social model understands that many of the common responses to disability — pity, “there but for the grace of god go I,” the impulse to give charity (which is often connected to pity), the stereotype of the “inspirational cripple” who is lauded for miraculously “overcoming” his or her “challenge s” — are really ways in which people distance themselves from disability, and imagine people with disabilities as somehow alien to them, somehow separate and different, as opposed to full-fledged and complex members of the human community.
- The social model also understands that these responses to disability are ways that non-disabled people avoid dealing with their own discomfort, their own fears, and their complicity in society’s oppressive treatment of the disabled.
When I encountered the social model of disability, it was like a personal liberation — like throwing off chains. I had been struggling for so long with health problems, and while I still, of course, wanted to improve my health situation, I finally realized that whatever happened to me healthwise, I was “okay.” I wasn’t doomed to some kind of miserable shadow of a life because I could no longer pretend I was able-bodied. I didn’t need to be so ashamed of myself, I could look into what assistive devices might help me without feeling like I had to prove that I could manage without them, and I could confront other people’s negative conceptions of disability head-on.
Now, of course, so-called “internalized oppression” isn’t an easy thing to shake off, and I haven’t gotten there completely, though I’ve come a long way since I was 15 or 16. If there’s one thing I want you to take away from my story, it’ s to challenge yourself to think differently about disability and human norms. If you come away from this talk feeling warm and fuzzy, if you come away thinking “oh how inspiring that Jessica has overcome so many challenges in her life!”, then I’ve done something wrong. If I had more time to speak to you today, I’d tell you more details of the disability rights struggle in the US and around the world, how people with disabilities have their lives limited every day by negative attitudes and societal oppression, and how those attitudes and that oppression all too often actually kill people. I want you to be uncomfortable. I want you to be uncomfortable in a way that spurs critical analysis and re-examination, so that you will think about how you may be unconsciously complicit in the problem, and how you can participate in the social change that needs to happen. And I say this all to you in particular because this is one of the strongest, most supportive communities I’ve ever been a part of, and I have tremendous faith in all of you, and I have faith that you can and you will actively participate in the change that needs to be made.