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Doing What We Could Not Do
Written by Sean on Sunday, October 4, 2009
A recent comment reminded me of a complaint I have heard regularly from people with physical impairments. Basically, they are saying that we show a certain arrogance by continuing to use our legs, or doing "2-legged" activities, while stating we need to be paralysed or amputees. They seem to think that if we really had the need we say we do, we would immediately abandon things we can do in our AB bodies.
I can see, in part, where they come from. They don’t have a choice. They see us as having a choice. But at the same time, we say we don’t have a choice, yet, go from wheelchair to walking and back to chair on occasion. This would seem to be illogical, at best. Many people with physical impairments I’ve spoken to that highlighted that "issue" seemed to be taking this as a nearly personal insult.
But it isn’t an insult to anyone. It is not mocking anyone either. I am speaking for other people here, but I feel it is appropriate, as it is something oft discussed. We don’t do the things we do to piss anyone off. We certainly aren’t trying to mock anyone.
The thing is, we are NOT paralysed. It is easier, by far, to do house chores while walking rather than wheeling. I have done chores in the chair, often enough. I know I *can* do it. But it is easier to walk. Easier and more efficient. And so I walk. It is hard enough living with BIID, I don’t need to complicate my life even more.
I would gladly give up my ability to complete these chores while walking. It would be a good trade-off to me: Be completely paralysed (hence lose the anguish of BIID), and have more logistical difficulties with cleaning.
Chloe needs to be paralysed. She still skies. She still hikes. No point giving these activities up, which to a point help her relax and find peace, until or unless she is paralysed. At that point, she won’t need the peace derived from skiing or hiking. Because BIID anguish will be cleared out!
Other people have their own other activities they do.
Sometimes, we walk, not because of our own selves, but because it is better for our families, for our loved ones. We compromise for *their* well-being.
The thing is, it is not a cut-and-dry issue, there are many layers of complexity to this.
So, if you’re transabled, what activity do you do using your legs (or senses), which you wouldn’t if you were paralysed, amputee, deaf or blind? What things would you give up, and do you think the exchange would be fair?
Tags: Amputee, BIID, Paralysed, Transabled
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14 Comments
I frequently chat with the guy at work who has complete T9 paraplegia. Inevitably para stuff and wheelchair stuff comes up in conversation some of the time. A couple of weeks ago he volunteered that what he missed most about walking was being able to go to parties of AB friends, because they don’t live somewhere that is wheelchair accessible. I immediately realised that would also be the biggest issue for me if I were an obligatory wheelchair user.
I’ve learnt the hard way that my friends do not live in wheelchair accessible houses. I’ve given up attempting going to parties in a wheelchair. It’s always a leg brace or two, but no chair.
I would definitely prefer to have the option of using leg braces post injury for this reason alone. I am very much a party girl, and it really would upset me to miss out. I am thinking about this right now because I just got dressed up and ready to go out to a party this evening.
3 On 5 October, 2009, Phil said:
If I had to write a “balance sheet” then on one side there could be the words: relief, finally be me, free of BIID, identity, fulfilled wish, grown courage, no more distraction.
On the other side there would be: dancing, bicycling, being like others/being normal, being able to do nearly everything with others and like them, not standing out, reaching the toilet up- or downstairs easily, climb mountains, jump over walls and creeks, walk in the snow, be attractive for gays, walking and running up and down the stairs in all kinds of houses and old church towers, carrying lots of things, …
I think I do lots of things because others expect them and in order to be accepted and part of a crowd. (My therapist even thought this might be a cause of BIID – cutting off who I really am, being too flexible adjusting to others.)
Would the exchange be worth it? Just recently I got a mail from a fresh amputee who said: It is overwhelming what one cannot do.
I think I would be happy, but there would be a sense of sadness, too, after the good-bye to my legs, to running, jumping, dancing and walking… a certain wrench maybe…
Parties are important. Being able to visit everybody regardless where they live.
As a DAK BIID person, I still could, but not as easily as now, often only on my hands and butt.
Maybe if you guys still find it better to do certain things able-bodied, it’s a good argument for seeking some treatment other than spinal cord transections or amputations.
5 On 6 October, 2009, Sean said:
@Martin, certainly more convenient. Not better. The problem, which you seem to be ignoring, is that there are NO other treatment than surgery for BIID. I’ve spent a LOT of my life working with therapists to find a way. And I’m not the only one. I haven’t lightly reached the conclusion that becoming a para is the only way for me.
Yeah right,
And I’m sure John McCain didn’t reach the conclusion that starting a war between the US and Iran lightly. That hardly means it’s a good conclusion.
7 On 6 October, 2009, Sean said:
@Martin, I won’t have a political debate with you on the site. I will, however, reiterate that THERE IS NO known remedy for BIID, other than surgery or self-injury.
This is not a lie. Psychotherapy has not shown to be efficient at changing BIID needs, pain or behaviours. Pharmacotherapy, the same. Don’t just take my word for it. Do a bit of research, read the published research on BIID. You’ll see, people who’s job it is to research, study and understand these things conclude the same thing.
You can also read http://transabled.org/thoughts/sean-thoughts/in-response-to-an-email-calling-me-sick.htm which talks a bit about my own experience getting “help”. But it seems you’re determined to disbelieve what I and other transabled people say about it, so I don’t know that will enlighten you much.
First of all, just because current therapies have not shown to work, does not mean that there isn’t going to be some cure at some point. If anything, the fact that so far medical and psychiatric professionals don’t really take this problem seriously, is proof that the possibility of another cure has hardly been explored, let alone shown not to exist.
After all, how can one hope to treat this thing with medication or therapy if the professionals haven’t really studied it properly? They can’t. So realistically, medication and therapy haven’t been genuinely tried. Depression had centuries of recognition and bipolar and schizophrenia many decades before any real help was developed.
However even without established talk therapy, medication, or other treatments for BIID, I question whether or not becoming a paraplegic is really a good treatment. The fact that so many of this group often present themselves as disabled but still do things a person with their target disability can’t enjoy, raises some big honking Red Flags in my mind. From skiing to housework, it’s like an FTM who is theoretically living full time as a man, but still likes to wear bras and dresses. Would that concern a sex change surgegon? Absolutely!
Some amputees claim to be happy after getting their target disability. But not only is experience with this limited, but paraplegia is a far cry from amputation. There are so many long term issues with paraplegia not just the bladder and bowel stuff and the pressure sores but also osteoporosis and pneumonia. With experience limited to a relatively small number people who mostly have received amputations, I don’t consider it proven that long term outcomes would be good if people were intentionally paralyzed.
Transsexuals are or limited relevance as well, because sex is not a disability.
9 On 6 October, 2009, Sean said:
@Martin, you’re right – It isn’t because psychotherapy and pharmacotherapy haven’t worked to date that something won’t be found in the future. So you’re telling me that I should continue to live in hell, because maybe, if I’m lucky, in 10 or 15 years, a less invasive solution than surgery will be found? That’s a heck of a gamble to take with my life. I have ZERO quality of life currently. I have lived in hell for more than three decades. I have no desire to continue living in hell in the vague hope that something less intrusive might be found. I am not adverse to continuing to search for less invasive solutions, but while we look, we should have access to the only thing proven to work.
Still doing things as AB is merely due to the fact that it *is* easier. It is not arrogance on our part. I would much prefer be unable to do tasks as an AB because I was paralysed. Because I would not be suffering as much as I am now. But since I do have working legs, I opt to make my life fractionaly easier. It is a question of balance. If I balance my emotional strength + physical strength, right now, the winning equation is by doing some things as AB. Were I to be paralysed, the emotional strength would be much higher and I wouldn’t need to do things as an AB to come out ahead.
I am well aware of all complications caused by paraplegia. ALL of them. Including a reduced life expetency. I suspect there are very few transabled people who are poorly informed about those. I’d rather live a few happy years as a para, even with some health complications, than many more miserable years as an AB.
Of course having several individuals for whom amputation was a “cure” to their BIID is not a proof that becoming a para will cure our BIID. But it is a damn strong indication. The fact is, how the heck do you prove that becoming a para works, or doesn’t work, if you don’t have people going down that route? I am convinced that becoming a para is the answer, for me. I only ask the chance to experience it and prove I was right, or prove the contrary, that I was wrong. And if I am, I will be the first to admit it. But I won’t be in any worse position than any other para.
10 On 6 October, 2009, Phil said:
@ Martin
It is so easy to talk about the lives of other people.
What do you really know about Sean, about me and about BIID?
What can you personally offer to help us?
@Martin and all,
It’s important to remember that issues due to paraplegia are not a barrier to surgical treatment of BIID. Once the mind is open to surgical possibilities, there’s a lot of variety available in the treatment. Some patients apparently need the familiar spinal cord transection. Other people just need their legs paralyzed, or otherwise incapable of normal walking, thus needing mobility aids. If this were the surgical aim, then it’s a simple matter to avoid bowel / bladder / etc issues, by treating some area other than the spinal cord.
Well, becoming a paraplegic is a heck of a gamble to take with one’s life, one way or another.
So it’s a gamble either way. Also how can you know you’ll be happy as a paraplegic without having tried it in full? How do you know that you won’t hate it the minute it becomes a reality?
The reality is that living with a spinal cord injury is hard in a way that amputation doesn’t equal.
And what if they find a cure for spinal cord injuries? Then what would you do?
13 On 7 October, 2009, Sean said:
Martin, of course becoming a para is a heck of a gamble. And there is no guarantee that I’ll be happy. That said, I know that it is worth the gamble. Because the alternative is hell. If you’re faced with burning to death up on a cliff, or jumping the 500′ down the cliff into a lake, what would you do? Likely, take the risk of jumping down, even though you might not survive the process. Because you *know* that if you don’t jump, you’ll burn to death.
And you are assuming that when I say I do chores as an AB, it means I’ve not “tried it in full”. I have lived well over 12 years now using a wheelchair 100% of my time in public. During that time, I *have* gone for significant periods without “cheating”. Please don’t assume that my decision, my choice, is a whim. There has been a lot of thoughts put in, and I know and understand what it is like to be a para as well as possible, short of being a para myself.
As Becs said, my house (too). My room is on the 3rd floor (it is one of those trilevel houses: basement, garage, LR, bedrooms), which would obviously make problems for getting to bed, and there are steps on the outside… x.x Oh well… Other than that, I do karate, which doesn’t mix with being a para at all, I just keep at it to keep dad at bay (aka:: suspecting something).
But I think the trade off would be fair.
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1 On 4 October, 2009, Becs said:
Live in my house! Although it’s technically on one floor, there’s a basement and seven steps leading up to the entryways. The bathroom door is too small and not accessible, anyway. I can’t afford to move and honestly, I like my house and my neighborhood.
I moved here before I knew anything about BIID. I knew how I felt but didn’t know anyone else felt that way.