Finding a Place in the Disability Community

By Guest Blogger Maddy Ruvolo, Systems Change Advocate, Marin Center for Independent Living and Youth Caucus Chair, National Council on Independent Living

Two summers ago, I was in a workshop during orientation week of an internship program for students with disabilities. The speaker, a well-known figure in the disability community, told the assembled crowd that there was never any excuse for us not to go to work. “We’re disabled,” she said, “not sick.” Except, I thought, I am sick. That’s my disability. I have a chronic illness.

Dysautonomia, a malfunction of the autonomic nervous system, came into my life when I was 14, a sophomore in high school. For the next three years I would rotate between my basement couch, doctors’ waiting rooms and my kitchen table where teachers assigned by the county would come do school with me for a few hours a week. I was able to regain some stamina in the years since, but the illness remained.

When I was in high school I had no sense that I was part of a disability community. The thought simply didn’t occur to me. People with disabilities used wheelchairs or were blind and I was just a formerly healthy teenager who now couldn’t stand up without feeling dizzy. “I play field hockey and lacrosse,” I continued to tell people, even though that was no longer true.

It took discovering microblogging site tumblr halfway through college (like a true millennial) for me to realize I might qualify as disabled. When I joined, I immediately started talking to other people with Dysautonomia, then other people with chronic illnesses and then all of a sudden I was reading about ableism and the social model of disability and a lightbulb went off.

So now I considered myself disabled. I had language to talk about my experiences, I had newfound heroes to admire, and I had five years’ worth of internalized ableism to unpack. With a handful of friends, I started a club for other disabled students on campus. I started calling out ableism in my classes and grumbling about the lack of disability studies courses. And I applied for the summer internship program for students with disabilities.

I had, of course, always known that “chronically ill” was far from the first thing that popped into people’s minds when they heard “person with a disability.” I knew people looked at me and didn’t think “definitely spends way more time in bed than most college students.” I knew the disability rights movement was started by and for white men in wheelchairs. And I understood that historically, perfectly healthy disabled people had been labeled as “sick,” and that the label had been used to justify discrimination. I get why a healthy disabled person would want to assure their supervisor that they weren’t going to miss work because they were sick. But I knew that I was going to sometimes have to miss work because I was sick, and the disability community didn’t seem to have an answer for how that fit into the movement.

That same summer I went to the first ever conference for people with Dysautonomia. After being immersed in a disability community anti-cure pridefest, it was a little jarring. Surrounded by disability advocates, I had managed to convince myself that I wouldn’t take a cure if it were offered to me because it would change who I was and I was proud to be disabled. And then I went to medical workshops where doctors talked about new research that might alleviate pain and fatigue and I remembered, oh right, I do want a cure. But, I realized, I was still proud to be disabled, though it was a more complex and prickly kind of pride than I had first encountered. Being around people with all types of disabilities had made me sincerely appreciate body diversity as beautiful and interesting. I cherished the communal experience of being around other people who found creative ways of moving through the world.

And yet, there were moments like that workshop pronouncement when I wasn’t sure the movement wanted people like me. In the years since, I have experienced similar moments on occasion – a snarky comment about a newly disabled person feeling traumatized, a joke about people with congenital disabilities being the “real” disabled folks. There is little space in the community to mourn a life before disability or share the pain of such a dramatic change. I’ve realized that although good intentions abound, the disability community still isn’t quite sure what to do with people who acquire their disabilities.

To speak of disability as life-ruining is anathema to long-time disability activists; yet if becoming disabled means you have to move homes or switch jobs or give up beloved hobbies, it is not an unreasonable first reaction to assume your life is over. If you haven’t had much interaction with disabled people prior to your own disability, you will have learned from media representation and social expectations that you have just become an unloveable, lazy object of pity. Likewise, those of us with chronic fatigue and chronic pain (including many people born with disabilities) often have difficult relationships with our bodies. It’s not always easy for us to love our bodies when they have us lying in bed curled up in pain for the fourth day in a row.

So I’d encourage the disability community to embrace the complexity of our bodies and the diversity of our community. Figure out a way to dispel stereotypes about some disabled people without disparaging others. And be patient and welcoming of new members to the disability family. Being embraced by a community is a good way to learn that your life is not over.

About the Guest Blogger

Maddy Ruvolo is a disability activist based in the San Francisco Bay Area. She is the Systems Change Advocate at the Marin Center for Independent Living and the Youth Caucus Chair of the National Council on Independent Living. She also serves as the Class of 2014 Recent Graduate Trustee on the Scripps College Board of Trustees. She graduated summa cum laude and Phi Beta Kappa from Scripps College, where she majored in American Studies. You can find her on twitter @maddyruvolo.