For years I’ve been told I don’t look like a lesbian, a comment widely used to invalidate the sexual orientation of femme-appearing lesbians and imply that we really just haven’t met the right man. I’ve always responded (somewhat snappishly) that I am a lesbian, so I must look like one.
Yet while I have never tried to pass as straight, I do try to pass as nondisabled. When people tell me I don’t look disabled, I’m glad. I think of it as a compliment. While I easily reject the negative associations with being queer, I can’t do the same with being disabled.
According to the Centers for Disease Control and Prevention, "About 60 million people or one in five Americans is living with at least one disability and most Americans will experience a disability at some time during the course of their lives."
One in five. The largest minority group in America.
So why am I so concerned about keeping my disability as hidden as possible, when so many people share disability? The primary reasons are similar to those for staying in the queer closet: protecting employment, worrying about how people will treat you if they know, fear of losing friends, fear of isolation, fear of being seen as damaged, fear of being pitied.
Yet one in five is a huge number. Millions of Americans are trying to get through every day without someone discovering they have something seriously wrong with them, without someone discovering they aren’t normal, without someone looking at them as if they are somehow damaged, less than, broken, sick.
I wasn’t born disabled. I lived a nondisabled life into my 20s. But then things began to go wrong. I had long periods of what 19th-century writers would have called malaise. I wasn’t exactly sick, but I definitely wasn’t well. I was exhausted all the time. I felt hot regardless of the season and in summers could barely stand the heat. My feet felt like they had burning pins sticking in them. Sometimes my hands were numb. After a long day at work, flashing lights would vibrate just at the periphery of my eyes. I often had vertigo.
It wasn’t until I turned 30 that the malaise and other symptoms — none of which I connected to each other — turned more dramatic.
At the time, I was an investigative reporter and traveled a lot. A month-long trip to the West Coast to work on a book ended with me coming back east half-dragging my right leg. I couldn’t remember twisting my ankle (I did wear quite high heels at the time) or anything that would make it difficult for me to actually pick up my right foot and put it back down again in a normal way. I planned to see the doctor on my return, but then it seemed to be OK again, so I didn’t. I chalked it up to overwork, traveling, driving from one end of California to the other doing interviews, sleeping in hotels, and experiencing an earthquake.
I walked or rode a bike everywhere for years and didn’t even own a car until I was 32, so when you’re working 60-hour weeks and are used to being physically active, you shrug off exhaustion as normal. I never got enough sleep. I loved to go out dancing, so often I traded a night in the clubs for the rest I really needed, thinking I’d rest when I was older.
I’m not sure when the symptoms got so bad I could no longer ignore them, but in my mid-30s there came a summer when I simply couldn’t get out of bed. I’d worked myself into true exhaustion, I told myself. But I knew it was more than that. And it was.
The next year I fell repeatedly. I was in and out of my local ER so much the nurses thought I was a battered woman. I broke 13 bones in 18 months and was always in a cast of some sort.
Then I went blind.
My life revolved around being sighted. I was a writer, I read voraciously, I wrote a lot of reviews and criticism. I taught college writing courses. How would I — could I — live without my sight?
It was the ophthamologist who figured out what was wrong. I had optic neuritis — a symptom associated with a disease I knew almost nothing about: multiple sclerosis, or MS. Optic neuritis, fortunately, is temporary, although it takes months to resolve and can cause permanent blindness. ON is one of the signal symptoms of MS.
MS is an autoimmune disease, and all I knew was it was called "the crippler of young adults" when I was growing up. If this was what was wrong with me, then I was now a cripple.
I resisted my diagnosis for more than a year. I walked with forearm crutches, and if anyone asked, I mumbled something about an accident. But then I had an exacerbation that lasted nearly three years and completely derailed my life. My legs didn’t work; I could barely move. Physical therapists and visiting nurses came to the house, which I only left a dozen times in three years, only to go to the hospital. I wrote from my bed. I lived in one room in my two-story house. I was fitted for a wheelchair, which I needed to get around, even from bedroom to bathroom. My then-partner and I split up under the strain. I felt suicidal. I was suicidal. My life was forever altered.
Now I was disabled. Now I was a cripple. The six-inch heels had to be retired, and my biking, hiking, and dancing days were over. But fortunately, my writing days were not. If I and my body were no longer reliable enough for investigative reporting, I’d do features and commentary and write books. But I would not be disabled. I refused that label.
I’ve been in and out of a wheelchair for more than 15 years. There’s a motorized chair in my house, a manual chair in the trunk of my car. A stair glide takes me from the first floor to the second in my house. I walk with a cane when I go out, and I can’t walk far. I still write from my bed. More days than not, it’s difficult to get up out of it because my brain won’t speak to my arms and legs. MS has damaged my sight and given me near-constant vertigo. I wake every day with my hands and feet completely numb and in spasm. Summers are unbearable, as my body no longer regulates its temperature. I rarely leave the house between May and October.
Disability has radically narrowed my life from what it was. When I dream I am always doing the physical things I love that I can no longer do: running on the beach, rock-climbing, biking, dancing. When I begin a new semester of teaching, I arrive in my wheelchair, because I can only sit with my legs unsupported for short periods. I joke with students that my legs start to shake at about the second hour of class, but not to call 911 unless I actually slide onto the floor.
I battle daily perils of disability: I fall a lot, I drop things, I think I can do more than my body will allow, I yearn for my old body that could do whatever I wanted it to. I watch nondisabled people pull into handicapped parking spaces and inform me that they’ll "just be a minute," as if someone with an actual disability has nothing better to do but wait for nondisabled people to run their errands. I listen to people complain about disabled people bilking the government with false claims.
And I hide. I stay as deep in the disability closet as possible. I have conversations with editors while lying in bed, committing all discussions to memory, as my handwriting became completely illegible several years ago because my hands shake or go into spasms. I give webinars because they don’t require my leaving the house. I only do a few investigative pieces a year, because my body won’t allow me to do more.
Ableism, like homophobia, is a thing. It pervades our entire society. The Americans With Disabilities Act is an unreliable farce, and those of us who are disabled — one in five — must battle with employers and landlords, doctors and health insurance companies to get what we need. We have to be activists whether we want to be or not, and yet all the while we must do our best to hide who we really are from those on whom we depend for survival.
But if one in five of us is disabled, that means everyone knows someone with a disability. Every family has one of us, every workplace, every school, every friend. We are everywhere. But is disability addressed in any community — LGBT or any other — or are we shunted aside as much in 2013 as we were centuries ago, kept out of institutions by recent laws, but not by attitudes?
One in five LGBT people has a disability. Do we even think about it as a community, other than to pay lip service to the term "ableism"? I have a friend on Twitter — a trans woman with cerebral palsy — who I would never know was disabled from her exchanges. But I know, because I’ve experienced this myself, that when she goes out in her wheelchair, she’s treated as if she’s not really there. Her smart, witty, articulate self is obliterated by people seeing only the disability. People speak to the person pushing your chair, as if you’ve been rendered mute.
I haven’t been rendered mute. Ableism is the last and perhaps most formidable ism we have to address in our society. Our fear, as a culture, of the sick and disabled is not much evolved since the Middle Ages. We no longer warehouse the disabled, but we still want to. We still want to keep the different bodies out of our line of vision, because disability feels foreign to us, and frightening — perhaps because we know it could be us next.
So this is me coming out crip. I never thought I’d be disabled until I was. The issues surrounding disability are huge and touch all of us, so none of us can afford to ignore them.
VICTORIA A. BROWNWORTH is an award-winning journalist, editor and writer. She has won the NLGJA and the Society of Professional Journalists awards, as well as the Lambda Literary Award and has been nominated for the Pulitzer Prize. Her work has appeared in The New York Times, Baltimore Sun, Philadelphia Inquirer and The Nation, among others. Her book Restricted Access: Lesbians on Disability is available via Amazon or your local bookstore. Follow her on Twitter @VABVOX.