transabled.org

Hi Zoe
I’ll open the discussion then, though I don’t think I’ll win your $20…

For me the reason why I don’t just make that decision is because of the inconvenience I know it would bring to my husband. He has enough to deal with without me being ‘wierd’ too. I know he loves me and he’s assured me countless times that he’d still love me if I used a chair (though he was thinking through accident and not ‘choice’). I love him and I’m not going to put him through the emotional agony and physical inconveniences of that. Yes it causes me hurt and yes I struggle with that decision sometimes and think about changing my mind but for me my love for my husband stops me living full time as a para.

Zoe,In order to place a wager I would have to disagree with you,so no bet:)

I’m with Ada on that one!

Because I said so! There, give me $20.00! :p

…please? The ‘Dante Fund’ is running rather dry. :p

…but in all seriousness, that’s a point that has been made time and again; there is no strong logical explanation to the opposition, which is all the more painful when dealing with something that people take as so illogical.

“And the medical profession fail to see that ‘disablement’ is any sort of cure”

They fail to see our desire/need/wish/(whatever you call it) as an illness or a condition that causes us to suffer and that deserves treatment… (and even ‘disablement’ if there is no other known treatment)

It is the same logic that inspires racial bigotry. It is the same logic that says I am a bad person because I am in a lesbian relationship. It is the logic that says “different is bad”. No logic at all.

I think the disability community’s strongest (although not very logical) argument against us would be the fact that BIID isn’t included in the DSM. It wasn’t on the last version’s list of stuff being considered. For them if it isn’t there it doesn’t exist.

I’m in the same boat as the others: I agree with your point of view, Zoe, but I’d be interested in the discussion if anyone took you up on it.

I’d expect that the reason for the professionals’ mindset is kind of Darwinian, even if they’re not conscious of it. Because there was a time when survival depended on fitness, both physical and mental, it’s deeply programmed into most humans that any deviation from peak physical capability is to be avoided if possible, remediated if possible, etc. So anyone wanting to live a physical reality different from an imagined ideal needs to be “treated”.

That whole philosophy is challenged by people who’ve lived with congenital disabilities for a lifetime, a large percentage of whom don’t want to be “fixed”. Because they’ve accepted and are comfortable with their bodies and their body image as it is. Same for many with congenital deafness.

Like Zoe, I’m very “libertarian” on this very personal issue. Is it really anyone’s business if I would be capable of living, doing my knowledge-intensive desk job, and paying my taxes while sitting in a chair?

If I consume more specialized rehab and medical services, wouldn’t that be offset by the fact that (for one example) we don’t have kids drawing on public education or using other public resources? Since I’m not obese or don’t have many (any?) other risk behaviors I might not need more than the average amount of medical support through the rest of my life.

Marlon, consuming rehab and medical services would be offset by less use of mental health services. Simple as that. We have a real condition that makes us use medical services now, it just would be a different pocket from the same coat.

True :-) it’s only that the cost of mental health services is one of the lowest on the medical menu, on average, while the first-year cost of a thoracic level SCI is $228,955 and then $23,297 for each and eversy ubsequent year (NSCIA 2003), owing to the plethora of very challenging complications, meds and adaptations that come with the whole package.

So when I have this discussion with a colleague who is a healthcare economist I find myself “bargaining” over the many other public goods that I don’t draw on, trying to balance out the admittedly high cost of SCI :-)

I sound like I’m arguing the other side, but I’m really not. Just acknowledging the reality of the $ aspect. There are many other aspects of course.

Would it not be true that an elective spinal cord transection should be a lot less costly?

Chloe, I think the surgery itself would be relatively cheap. It is not a long nor difficult surgery at all. Yet, costs of rehab would be involved (I doubt that even the best prepared person can be completely ready for paralysis). And ongoing costs of chairs, caths, etc. Still, it would not be anywhere as costly as an SCI from trauma, I don’t think.

Sean I think I agree with you but I’m not sure why. Surely the only savings to be made on someone who has elective spinal cord transection is the lack of emergency surgery to stabilise and possibly a decreased number of counselling sessions needed. Are those things really a large percentage of the cost? all the rehab for learning how to use the altered body etc would still be needed. As well as a fairly lengthy hospital stay. Though perhaps not as legthy as someone who needed to stay immobile for a while to achieve stability.

Perhaps I’ve been answering my own question here but what do you believe the major financial savings are for someone who elected to have their SCI?

The initial emergency medecine fees, and hospital stay, and braces/etc. A back brace alone may cost a couple thousand dollars, which was the cost of a surgery I had on my foot similar to what would need to be done for an elective surgery. With an elective surgery one could pretty much go straight to rehab, without any other hospital stay, to do the healing while doing rehab. I also suspect that the amount of rehab required would be reduced, partly because of the short/non hospital stay. Further, one might prepare for it knowing it is coming, so a lot of the issues one has with having to rebuild muscles, etc could be taken care of ahead of time.

So, by and large, I suspect that the amount of time required in hospital, and in rehab, would greatly reduce costs. I could, of course, be completely off base here. But we don’t know, do we? Because nobody’s done it!

Many transabled people are already well aware of what is involved in rehabilitation after doing years and years of research online. A great amount of what they’d be learning in rehab wouldn’t really be coming as a surprise.

Sean,
Very interesting points. One thing you started me thinking about with your posts: if proper surgery were available to achieve our body identity, it might be possible to control the lesion so that something like Central Cord Syndrome could be applied. That would deliver motor paralysis without as much sensory impairment, meaning that there’d be much less risk of expensive and nasty pressure sore treatment and so on. Which changes the equation a good bit.

Just thinking out loud with this. It might be part of others’ identity to have sensory impairment too, but my own deeply imprinted identity centres mostly around actual motor impairment. I think, anyway.

Considering the realities of the medical establishment, for the last few years my personal planning has focused on organizing a controlled “trauma” rather than hoping for controlled surgery. But that’s just me.

My body image is of a T12 complete paraplegic. I wouldn’t be happy with anything less than full loss of control and feeling.

I’m a bit like Sophie, I need the whole thing.

As for controlled trauma, good luck. I’ve build plans upon plans and haven’t figured one that would lead to what I need. Not without risking cracking my skull open or risking killing my kidneys in the process.

“As for controlled trauma, good luck” I’ve worked out and tested a method that is prob 95% reliable without risk of head trauma or organ damage. But the interesting thing is, it would need to be carried out during a one-month window in July of any year (for reasons I won’t go into). So as each year goes by I have to think long and hard about going for it. I haven’t made a final decision yet, but I have made plans to do a few things that would be out of reach if/when I make the transition. E.g. I’m finally going to New Zealand in February to hike around the Franz Josef Glacier area. Even if ’09 isn’t “the year”, it’s taking me to some interesting experiences, and there’s a reassuring sense of “progress” in the preparations.

Hope everyone has a great year.