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Home / Thoughts / Open letter to the disability community

Open letter to the disability community

Written by Sean on Wednesday, February 22, 2006

I wrote the following "Open Letter" a while back and submitted it to one of the big disability rights publications. They have a reputation for publishing thought provoking, "on the edge" material. I thought that perhaps this might be interesting for them. I challenged readers to rethink their attitudes and told them they couldn’t claim one thing yet refuse others similar claims. Of course, I never heard back from the editor, and it hasn’t been published. Sufficient time has elapsed that I do not believe they will use the material, so here it is!

I’ve often heard hard core disability rights activists make their spiel about the independent living model of disability. They say that there is nothing wrong with having a disability. They assert that their disability, in and of itself, is neutral. They talk about disability pride. And I wonder how true they really are to their beliefs.

I am transabled. I coined this term while thinking that my condition is very similar to that of those who have Gender Identity Disorder, what most know as transsexuals. Some of you may have heard of "wannabes", which is a label you could apply to me, but falls far short of describing my situation. I have always felt, from my earliest childhood memories, that I was in the wrong body, that I should be paralyzed.

Some ask me, "So you want to be a paraplegic?" While the easy answer to that question would be "yes", the real answer is somewhat more complicated. I do not want to be a paraplegic. I need to be paraplegic. But it’s more than a need.

My self-image is that of a para. I am a paraplegic, stuck in the wrong body.

Almost invariably, when I discuss this with people who have a disability, they are shocked. Rarer in my experience is the person who wants to know more and accepts it immediately. Rarer still are those who think it’s actually cool that I and others would want to be like them. We need more open-minded discussion, more exchange so we may understand, and accept each other better.

I’ve been told I was crazy, sick to want this. I don’t refute that assertion. But can a disability rights activist use the label "crazy" in such a way, in good conscience? I can’t help thinking of a button I’ve seen some activists wear. That button says: "You call me a bitch, like it’s a bad thing". You call me crazy, like it’s a bad thing.

Yes, this "thing" can be viewed as a mental illness. In fact, it is scheduled for inclusion in the next edition of the DSM. "Body Identity Integrity Disorder" is what it’s called.

It can be argued that the independent living model view of disability being neutral is debatable. I know that a disability can carry some bad stuff with it. That in fact, there are negatives that do not come from without, chronic pain, for instance.

I know what it is like as much as one can possibly know without actually having a disability. Please don’t make the mistake of thinking I couldn’t possibly know what it’s like. To tell me I couldn’t possibly understand shows a certain arrogance, saying "Only I have had the penultimate of this experience."

How many of you cringe when you hear someone say, "I’d rather be dead than disabled?" Wouldn’t you find it refreshing to hear, "I’d rather be dead than continue living in my able body?" Because that’s where I am.

I’ve also heard some hard core gimps say that being involved in prevention campaigns was not a good idea. You’ve said that you couldn’t in good conscience advocate prevention, because it would then mean that your life with a disability was negative and needed to be avoided. And if a disability is not to be avoided, how can it be bad to seek it out actively?

Because there aren’t any accepted ways to safely achieve the desired disability, perhaps this is all just rhetoric. No doctors in their right mind would proceed with elective amputation of a healthy limb or with spinal cord transection. Something about the Hippocratic Oath, and "do no harm", they say. I fail to see the difference between cutting a leg because a cancer is attacking and threatening the body and life of an individual and transecting my spinal cord because my transability is threatening my life.

I am not writing this out of self-pity. I accept myself as I am. After over 3 decades of living with this, I can finally say I’m not ashamed, I don’t feel guilty anymore.

But I am tired of being nearly systematically rejected by people with disabilities, just because my disability is not well known and is even less accepted.

And for a group - the disability community- that wants acceptance by society at large, wouldn’t it make sense to be more accepting of others? If you truly believe what you say, be more open to transabled folks, and support the wannabe community, or at least, be willing to talk to them with an open mind.

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