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Home / Thoughts / Sean's Thoughts / Tricky questions and opening dialogue

Tricky questions and opening dialogue

Written by Sean on Sunday, April 27, 2008

Someone made a long comment in response to a post I recently made, asking several deep and interesting questions, which were too important to ignore, and too important to let them get burried in a thread with another post. And so, I removed the comment and reproduce it here, and I shall address it, the issues and questions within. It’s good stuff, tricky issues. But further than that, I am glad that someone who has a physical impairment is willing to open dialogue, and learn more about us. In the end, she may not agree, but if she disagrees, she’ll do so on an informed basis, rather than knee jerking!

Jocelyn wrote:

I’m dropping in from the totally non-uniform, varied and heterogeneous “disability community” because I have some questions about being transabled.

I have a congenital SCI, T8 incomplete. From my brief look of the website, I worry that the transabled experience of paralysis condenses the entire experience of paraplegia down to 1) using a wheelchair; 2) not using your legs; 3) being unable to do, reach or access something - completely missing out the less socially acceptable and more difficult parts of being a para - bowel, bladder and sexual dysfunction, skin breakdown, spasticity, and dysreflexia.

You make a very cogent argument here in that BIID is a mental illness and thus a disability of another nature. I follow your sociological reasoning, that much of the objective experience of oppression and that sort of “accessibility disconnect” is experienced by PWD and BIID. My question is as a transabled person, do you crave these other facets of paraplegia as well? The idea that anyone would willingly adopt these incredibly difficult, often painful “hidden” facets of being a paraplegic? Or is being transabled more about the experience of paralysis? My concern is that transabled people seek the experiences of people with disabilities that are socially sanctioned and often idealized, such as SCI/paraplegia - society conceals the messier issues of bowel, bladder and sexual dysfunction as ‘distasteful’ so would transabled people truly emulate those facets of disability which are not socially sanctioned or idealized? Are there transabled people who experience or emulate disabilities which are less socially excluded, such as cerebal palsy that impairs speech? epilepsy? brain injury?

Sean you mention in your comment that surgery is the only treatment that would really work - I take this to mean that you would willingly choose to take on ALL of the facets of SCI in your need to reconcile your body with your mind’s picture of how it should look, meaning the indignities that are little talked about.

So my second big question is the issue of ethics. I can appreciate its importance in “pretending” or undertaking wheelchair therapy. It made me think of how accessible bathrooms in our school are currently being made into gender neutral bathrooms for trandgendered people to have a safe place to go as well. The single-room, separate wheelchair bathrooms are re-signed with a man, woman and wheelchair symbol of equal size. People now assume these washrooms are for anyone and thus they are preferred by the student body. Due to the increased traffic and loss of social pressure to not use wheelchair bathrooms, they are constantly busy and in bad shape. We can’t fit in the larger, gendered bathrooms because there are no wheelchair stalls within.

So - my feeling is that if someone else is coming between me and the ONLY toilet around that I can use, and they have another option open to them for the toilet, I will use any means necessary to ensure that I get to use that toilet when I need to. How to transabled people approach this problem? How ethically is it resolved when a transabled person, by virture of the wheelchair therapy, must take up limited resources designed for people with no other option (such as adapted spaces on buses, wheelchair toilets, etc). Is this considered a no-no, or an acceptable cost of the therapy?

sorry to go on so long!

First, no need to apologise for going on so long, it’s all good :) Then, let me see if I can tackle these issues and comments one at a time :)

I always welcome people dropping in from the "disability community", who have a genuine desire to ask questions, and seek understanding of this admitedly complex "phenomenon" that is BIID. While the disability community is indeed "totally non-uniform, varied and heterogeneous", a fact that many in *our* community tend to forget, you have to realise that the BIID community is just as non-uniform, just as varied, and quite as heterogeneous :) There are many flavours and levels of BIID. In fact, I’ve heard disability rights people say there isn’t really a disability community, and I’ve argued that perhaps there isn’t really a BIID community. So my answers to you here are only my answers, and may not be fully representative of how other people feel, think, believe. Caveat emptor!

I have no doubt in my mind that many people in the "BIID community" are ignorant of the "unsavoury" aspects of being a para, such as the ones you point out: "bowel, bladder and sexual dysfunction, skin breakdown, spasticity, and dysreflexia". In fact, I ranted about such individuals, in a way, in a recent post. Different people come at this from different backgrounds and different life experiences. Some are more attracted to *the idea* of having an impairment than they really need it. Some are quite naïve about what their "chosen" impairment really means (and I use the word chosen carefuly here more on that soon). That said, I believe that by and large, the individuals who are "serious" about it, have a solid understanding of what the condition entails.

Now, a quick foray into the question of "choice", which doesn’t address your questions directly, but which is an important one… I say "chosen impairment", but it’s not a choice. For whatever reason, transabled people need an impairment. I did not chose L1 paraplegia specifically, no more than I chose to feel this way. It just has always been there, from before I had a name for what I need. I’ve needed to have paralysis from a very young age, and only later did I learn that paraplegia/SCI around L1 would actually give me what I need.

Yes, what I need, up to, and including bowel/bladder/sexual dysfunction. Obviously, I’d rather not lose sensation in my genitalia, but it would be a fair exchange, to give up my ability to have and feel a hard-on, if only I could finally be in the body that I’ve needed for the last 35 years of my life. Bladder incontinence? Yeah, well, par for the course. Spasticity can be embarassing, and painful and annoying. But it’s part and parcel of what I need, just as sexual dysfunction. Skin breakdown and dysreflexia are more serious issues. While I do not seek these out, I am aware that they are part of the deal.

But you forget other unsavoury aspects of being a para. Chronic pain for many. Sometimes it’s intense nerve pain, other times it merely results from bad posture, sitting in one position to long. I know I’ve got knots the size of melons (that’s how it feels anyway) in my back from sitting at the computer too long, month after month, years after years. My physio keeps telling me about "posture". And even being aware of it, not getting up increases the "damage".

Then there’s also the body wearing down, doing something it was never designed to do in the first place. Arms were not designed to be the main mode of locomotion. As a result, shoulders, elbows, wrists, they all wear down. Bad posture can even lead to herniated disks in the C area, and high T… After 30+ years of pushing a manual chair, my late wife was so riddled with arthritis that she had to move to a power chair. My wrists have been showing signs of arthritis for several years already. I suspect that a power chair is in the future for me as well. I’d rather avoid that, and I take care of my body as much as I can (well, the upper part anyway).

So, yeah, it’s not that I’m not aware of all the less "glamourous" parts of being a para. It’s just that on the greater scheme of things, for me, they are… I was going to say irrelevant, but that wouldn’t be right… perhaps "neutral" is the right word. They are negatives, but balanced by positive, become neutral. Do I *crave* these aspects? Some yes, some no. Bladder incontinence is indeed part of my need. Skin breakdown, well, it’s not. Perhaps it is a matter of scales, scale of danger to the body. I don’t know.

You ask "would transabled people truly emulate those facets of disability which are not socially sanctioned or idealized?". As I am not sure what meaning of "emulate" you intended, I’ll address both ;) Merriam-Webster says that it is either "to strive to equal or excel", or "imitate". In the case of the former, yes, I think I covered that, we’d take these aspects as part and parcel, although perhaps if some of these were optional, they wouldn’t be selected. But they aren’t optional, are they? Bit of the luck of the draw, and so we’ll take it all. As for the later, it is difficult to immitate muscle spasms, or dysreflexia. But many do use cathing or nappies in their daily activities, as part of it all.

Then, you ask about people needing less socialy acceptable conditions, such as CP, epilepsy, and TBI. To be honest, I don’t know. I have never heard of someone saying they needed CP, or epilepsy, or a TBI. I do know, however, people needing to be deaf, people needing to be blind, and obvioulsy people needing to be amputees, but an amputation is on the more acceptable end of the spectrum, and probably deafness and blindness as well. There’s someone I know who needs to have MS. A few people I know need to be quads. One of them includes being vent dependent in her body image. The thing is, when I first got on the internet, transabled folks needing paraplegia were almost unheard of. They existed, but we didn’t really know about them. As time goes by, they are finding their way to this site, or to various Yahoo! groups. We did not create dozens/hundreds of new people needing to be paralysed in the last 5 years. But there are now outlets for them to discover they are not alone, and that they have a real condition. I would not be surprised to start hearing from people needing more "obscure" or less acceptable conditions.

You then ask me if I "would willingly choose to take on ALL of the facets of SCI in your need to reconcile your body with your mind’s picture of how it should look". The answer is a restounding YES. No question, no contest. Though I should add that it’s not only about looks. My body "image" includes the physicality of it all.

Then there is the ethical question you pose. Should people who have BIID use accessible toilets, accessible bus spaces, and let’s not forget, accessible PARKING!!!! For the longest time, I was hesitant about using these facilities. Particularly accessible parking. My late wife (her again) had been a para for a long, long loooooong time, following a car accident. She’s the one that pointed out to me that when I’m out in the chair, I need the accessible parking just as much as she does. She further pointed out that she’d much rather a wheelchair user use the space than some ambulatory person who just happen to be old (excluding those with invisible impairments, obviously).

As for accessible toilets… The situation you describe is far from ideal, but I think it is not the fault of transabled people, but rather the fault of an idiotic bureaucracy that wasn’t thinking through the consequences of how they labelled the stall in question. In the 12 or so years I’ve been using a wheelchair full time, I have rarely come out of the stall when another wheelchair user needed (other than at disability rights gathering, but that’s a different topic entirely). In fact, I can recall two such times. Some might say it’s twice too often, but in terms of abuse of dwindling facilities, I think it really is a non-issue. Far more often have I had to wait (and as a result wet myself a couple times) for people reading the paper in the stall, or getting changed and taking their sweet time. Heck, I’ve even had two teenager come out of a stall, red faced and dishevelled - it was quite obvious what they were up to, and in a way it was rather cute, but still… Should I have jumped out of my chair and used a regular stall? I don’t think so. For me, I could no more do that than a para could. What impact would it have on people around me if they suddenly saw a wheelchair user get up and walk into the stall. What impact would it have on YOU, who can’t get up and go in, if you came by 30 minutes later. What would people think of *you*, because *I* got out? What’s the more ethical approach? To maybe temporarily limit your ability to use the facility, or to cause questioning about the validity of your impairment?

There’s more to it than that though, isn’t there? One could extrapolate this and ask the much trickier questions of "should transabled individuals have access to funding to get adaptive equipment?" Or "should the employers of transabled individuals invest money in modifications so we can hold XYZ job?" Or "should we be entitled to benefits when we aren’t able to work?". These questions in light of dwindling resources and growing demand are tricky ones. In general, the answer is, as far as I’m concerned, yes. It’s obviously not that straight forward. Because of my BIID, I am barely functional. I have avoided hospitalisation because deep down I know they couldn’t help me, but I have friends who ended up in psych wards and on benefits as a result of depression much less severe than my own. I’d qualify for benefits now, just about. So what difference would it make?

But underlying these question is doubt. The doubt that BIID might not be "real". The idea that because it’s in our heads, we can control it more than you can control your legs, bowel, bladder, etc. There seems to me to be an implication here, that one’s need is more real than the other. In fact, it smells a bit as if the actual implied thought is that people with mental illnesses are not as worthy as people with physical impairments to get accommodations.

So you see, the issues are not so self-evident, so clear cut as they appear at first. And it is my turn to have gone on rather at length. Hopefully it opens more of an exchange.

Cheers!

Tags: BIID, Disability, Disability community, Ethics, Paralysis, SCI