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Home / Thoughts / Sean's Thoughts / Choice, experience, authenticity and oppression.

Choice, experience, authenticity and oppression.

Written by Sean on Friday, April 11, 2008

I have been speaking with a disability rights activist on and off for the last several weeks about BIID, transabled issues, and how it all relates to the disability community. She has changed her views significantly and I think that she has gotten to the point where she *gets* BIID. She is telling me, however, that there is still an issue that many of her friends are voicing - they believe because we get to chose when to deal with the physical aspects of disability, our experience of disability is invalidated (no pun intended).

The exact statement she made was:

This is the issue crips are voicing - you get to chose when to deal with the physical aspect of disability, so for them it does invalidate your experience as authenticate and oppressive.

This is an important issue and a tricky one as well. I have often said that I know, as well as anyone who isn’t physically disabled can, what it is like to have a disability. Some folks with disabilities obviously disagree.

The thing is, BIID is a mental illness. We can never turn it off. We have no more control over it than most people have over breathing. We know what it’s like not to be able to turn off something that causes us much pain and hardship. This is not, as mentionned in the quote "the physical aspect", but then, what experience is authentic? Is it the actual physical experience of having an impairment, or is it the disability experience? I agree, I don’t know the experience of a physical impairment - I am not paralysed afterall. But, as long as I am out in public, my experience is indeed authentic. I have experienced the discrimination, the barriers, the pains, and also the joys. But all these things are feelings, they are not physical experiences. My physical experience is not, and cannot be unless I become paralysed, that of a paraplegic. That is true. But then, neither is the experience of someone who has CP, or Osteogenesis Imperfecta, like that of a paraplegic. So the common ground is that of using a wheelchair. The common ground is that of *disability* rather than *impairment*. We have common experiences when we interact in (a non-accessible) society. Those of us with BIID have an authentic (and oppressive) experience when we are denied access to a restaurant because of steps. We have an authentic (and oppressive) experience when we can’t get to a job interview because it is held in a non-accessible building. We have an authentic (and oppressive) experience when we get stuck on the lift of the public bus, half-way down. We have an authentic (and oppressive) experience when we are forced to use a public elevator that was used as a toilet by some vagrant. We also have an authentic (and oppressive) experience when we are faced with discrimination, hate, lack of access, lack of services, lack of help because of our BIID. The list goes on. And what of those with genuine impairments who use a chair but can get up and walk? Are they not genuinely “disabled”? Our experience is much like theirs. But more on that later.

As an aside, it is interesting to note that people with BIID are subjected to discrimination, hate, refusal of help and other nastiness by a majority in the disability community.
How about that, the oppressed becoming the oppressor!

So we do have the "disability" experience.

To support this, I think that refering to part of the Americans with Disabilities Act may be appropriate. One of three protected classes, under the ADA is "those perceived as having a disability" (along with "those who have a disability", and "those who have a history of having a disability"). If it is accepted that even just the perception that you may have a disability opens you to be a subject of discrimination, surely it means that you can have similar, authentic and oppressive, experiences.

I remember having some long discussions with E., a para I had met back when I first started using a wheelchair. It was somewhat uncomfortable for both of us at the time. But it was good in other ways also. When I explained I needed to be a para, she questionned it. She told me something to the effect that in many respects, I knew what it was like. My emotional experience of being AB was similar to her emotional experience of being a para. I am anguished by knowing I’m unlikely to ever be a para, wheras she (and some other paras)are anguished knowing they are unlikely to ever walk again. This emotional experience is quite similar. But this brings us back to of "what is an authentic experience"?

What about the question of choice? It’s a tricky one. I often say I do not have a choice about how I feel. The argument made here is not about how I feel, but about what I do. I *do* have a choice about when I use the wheelchair. My choice is not completely open, however. I can’t in good conscience just jump out of the chair willy nilly, especially when I’m in public. Part of what I consider "ethical" behaviour is to do my best not to cause problems down the line for other wheelchair users (regardless of their reason for using a wheelchair). This means that when I’m in my chair, I stay in and do things as a wheelchair user. I don’t jump out if a curb is too high, a door too narrow, a product on a high shelf, etc. Heck, I’ve even have been unable to control my bladder when the toilets were being used for other purpose than they were designed for (like the teenage couple making out in the accessible stall!), and as a result peed myself.

However, it’s not *only* a matter of “good conscience”. It’s a matter of people’s perception. If we are in an environment where we are known as wheelchair users, then the consequences of jumping out of our chair willy-nilly are disastrous. People would know that we are not physically disabled, they would see us as “faking”… And that would entail ridicule and mistrust - not an acceptable optionl. Further, there is a very real likelyhood that we would no longer be able to use our wheelchairs as a treatment for BIID - which would represent the loss of the only therapeutic activity available to us. We need our wheelchairs because without them there would be a potential emotional disaster regarding our relationships with others. Because I am known as a wheelchair user, as a paraplegic, I cannot get out of my chair. In effect, for the vast majority of my day, I am as stuck to the chair as if I had a physical impairment, because of the conscious choice I made early on.

When I get home, in the privacy of that home, things are somewhat different. I can, and do, use my legs, for a variety of reasons. Part of it is, I must admit, convenience - it is much easier to wash dishes, fold laundry, change lightbulbs when walking than when wheeling. But convenience is only part of it. Another part is that the body insists on moving. There is no choice there. Even when you will it not to, it starts doing things when you don’t expect it. And there are other, personal, things, which I won’t get into in this blog post.

There have been times when I have been wheeling and been royally tired of it, and feeling that need of my body to move. That feeling of wanting/needing to move is quite uncomfortable. However, I had to remain in the chair and endure it, for the reasons mentioned above. It’s not always a joy ride. Chosing to remain in the chair (out of necessity) can be painful and frustrating.

The fact that, in theory, I can get out of my chair and stop the experience is irrelevant. Because in practice, I can’t. I am known, and presenting myself, as a wheelchair user, I can’t just jump out when it’s convenient. I accept the experience as it comes, with all that it entails, as much as I possibly can. The fact that I do walk at home at times is also irrelevant. Being able to get out at home does mean I don’t have the same physical experience, but again, the "disability experience" is not so much about the physical as it is about the emotional and interactions with society. Let’s face it, it’s not really different from others with physical impairments who use wheelchairs in some circumstances, but not in others.

Many wheelchair users with a physical impairment *can* get out of their chair. This fact has been asserted several times in arguments about whether or not transabled individuals should use mobility parking spaces or accessible toilet stalls. So can the disability community accuse us of not having a genuine experience because we do get out of our chair, yet insist that we do when it’s convenient for *them* that we do?

But in the end, it’s not about the disability community, is it? Of course we want, and appreciate their support. But whether or not we have that support, we still have BIID. Their support or lack thereof will make no impact on whether or not we have BIID. It will make no impact on whether or not using a wheelchair is an effective therapy for BIID. They can not like it all they want, and we’re still going to have BIID and using a wheelchair is still going to help us deal with our BIID. Sorry, but it’s not about them. It’s about us, and our disorder, and our right to treatment for it.

Tags: BIID, Disability, Impairment, Oppression, Wheelchair