Disability and Representation

Changing the Cultural Conversation

Passing and Disability: Why Coming Out as Disabled Can Be So Difficult

Yesterday was National Coming Out Day. I officially came out as bisexual, and it was a celebration. No angst. No fear. No second thoughts. Just a celebration.

It was a such a contrast with coming out as disabled at the end of 2008, with all of the fear and dread that attended that decision. There have been many times since then that I’ve thought that coming out as disabled was the worst decision I’d ever made in my life. If I could have put the toothpaste back in the tube at those moments, I would have.

Of course, I’m a few years down the road now and feel much more comfortable, proud, and confident. But oh, what a process! And of course, the process never ends. I always have internalized shame, and hatred, and fear to root out of my head. And I still have to deal with a  world of people who don’t understand the physical and social experience of disability. But in general, I navigate these waters much better than I did at the outset.

It’s very difficult to come out as disabled, I think, because we face the dual reality that most people a) hate our bodies absolutely unapologetically and b) consider that hatred entirely natural. It’s for this reason that they can use disability slurs constantly and think nothing of it. It’s for this reason that they can segregate and exclude us as though we’re substandard merchandise to return to the manufacturer. It is still considered natural to react with revulsion against us in a way that other groups have fought against more successfully — not entirely successfully, obviously, but more successfully.

Partly, we face this hatred because our culture worships control and denies the fragile and ever-changing life of the body. Partly, we face this hatred because the medical model has taken over as a metaphor for human life. People are no longer evil. People no longer make bad choices. People are no longer victimized by oppression. People no longer act out of ignorance, or selfishness, or greed. No. Now they’re sick, crazy, brain-dead, retarded, mentally ill, have low IQs, and on and on.

In the face of this hatred, it’s very, very difficult to convince people that you love your disabled body because it’s the one you live in. You say that you love your body, and people look at you as though you don’t quite understand your own reality.

My body hurts a lot these days. But I still love it. It’s the body I was born with. It enables me to experience life. Without it, I’d have no life at all. I might not love every sensation in my body, but I love my body, even on the hardest days, because it gives me life.

© 2013 by Rachel Cohen-Rottenberg


    8 comments already | Leave your own comment

  1. 10/12/2013 | 8:03 pm Permalink

    There are a couple of things that you can do for chronic pain:

    Spray on nigari/magnesium choloride. The ratio is usually one cup to 3 cups boiled water. It’s cheaper to buy nigari from a health food store but you can get it as magnesium chloride from http://www.remarkableredwoodremedies.com/.

    The other method is gelatin/collagen therapy and there are recipes aplenty to be found just by googling. I put the collagen in my coffee and other hot drinks and use the gelatin to make gellies and other goodies but it’s also great in Super Coffee/Bulletproof Coffee. You can get it here:

    You won’t believe how much better you’ll feel and they’re both relatively cheap. And, oh yeah, you’re bisexual? OK, fine by me. = : )

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    • 10/12/2013 | 9:33 pm Permalink

      You are missing the point. This essay is about how a disabled body is one to be celebrated; the author probably has a million and one ways to control chronic pain. By ignoring what she’s saying and offering advice, you’re actually denying the fact that she has a real, disabled body and an appreciation for what that means. By saying “oh, you’re bisexual? Fine by me,” in the same breath, you are absolutely dismissing the fact that being disabled is as much of an identity marker. Stop trying to fix us and stop presuming that you are just trying to help with your suggestions. We are on top of it, I assure you. Trying to fix us means you are trying to erase our disabled bodies.

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      • 10/12/2013 | 10:16 pm Permalink

        I’m physically disabled and have suffered from severe chronic pain for years. These have helped tremendously. Part of the reason people suffer pain is that Big Pharmacy has kept simple cures from us. But by all means, don’t use them and also ask to have my post removed. Then congratulate yourself on being self righteous and rude. And I don’t care what her sexual orientation is. What difference does it make? She is who she is, I’m more interested in helping her so that’s what I did.

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        • 10/12/2013 | 10:57 pm Permalink

          I think there’s been a misunderstanding here, which is understandable, given that people don’t know each other.

          PJ, I get you were trying to be helpful and that it came from a respectful and good-hearted place. I’m not sure the context was right, and I can see how it was misread.

          Anna, I get why you reacted as you did, since this piece, which was about body acceptance and how difficult it is to get there, was probably not the right place for the suggestion. I can see how that would be a trigger. It was a little cognitively dissonant for me to get a suggestion about pain remedies, since I wasn’t concentrating on the pain issue for most of the piece. But it didn’t offend me. I just decided to leave the suggestion be and come back to it at a later time, when the context of the piece wasn’t quite so immediate to me. I do a fair bit of conscious cognitive switching because I tend to need to concentrate on only certain things at a time, so that was okay with me.

          I appreciate both of your perspectives, and I’m good.

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          • 10/17/2013 | 9:08 pm Permalink

            Eloquently and skillfully said, Rachel.

      • 10/18/2013 | 6:37 am Permalink


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  2. 10/13/2013 | 6:19 am Permalink

    I am still waiting to feel secure about my given reality.

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  3. 10/13/2013 | 2:23 pm Permalink

    Indeed, it’s been 20 years since I came out as disabled, and the persistent, contingent quality of this reality still surprises me. The disablist boundaries between “okay” and “them” still live in my head. Then there’s the assumption that “really” disabled people would not welcome my presence.

    The adjustment to this new reality requires, I think, a community that drowns out those internal doubts.

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