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Tough question and medical bias
Written by Sean on Monday, April 9, 2007
I was just asked an interesting question in email and thought that my response was pretty darn good, even if I say so myself! So here it is, a response to what I would chose: to be cured, or to see my need fulfilled?
Another thing I wondered about the desire. If you had the choice of getting rid of the desire or having it fulfilled, which would you choose? (Or is that difficult to say?)
I can’t imagine *not* having the desire. It has been an integral part of me for more than 30 years. I lack the tools to visualise a life without this condition. And it is a huge part of who and what I am, as such, it’s scary to imagine that it would be gone. If you "take out" BIID, then, what’s left of me? I mean… I’m not solely defined by BIID, but it is a significant part of me, the gape left if you took it out would be hard to fill out. I also don’t believe that there is a way to get rid fo the feelings. Because of that, if I were offered the choice between "cure" and "surgery", I would probably go for "surgery".
That said, if there was indeed a way to get rid fo the feelings, that wouldn’t leave me a husk of myself, I would have to seriously entertain getting rid of it.
But this comes down to a question of perception of the condition. I think here I have to put my disability rights advocate hat on. I think that the idea of "cure" is very much within the medical model view of disabilities, whereas I’m taking more of a social model approach. I assume you’re familliar with those models :) In case you aren’t, Wikipedia has a good set of entries: medical model and social model .
There’s nothing wrong in and of itself with having BIID. Having BIID does not distress me. What distresses me is the inability to get what I need. Drawing a better known parallel, there’s nothing wrong in and of itself with having to use a wheelchair. The problem comes when facing a non-accessible society. Without ramps in a building, the wheelchair becomes a problem. But it’s not the wheelchair that is the problem, is it? It’s the lack of ramps, the narrow doors, etc. Using a similar logic, it’s not the BIID that is the real problem, it’s the lack of treatment options available to transabled individuals.
Pushing this even further, within the Indepedent Living interpretation of the Social Model, it is said that the solution is most often within the individual, rather than necessarily coming from the professional. Here we have a community of people who believe that the way to go forward for them is to acquire an impairment (be it amputation, paralysis, deafness, blindness, you name it). Anectodal evidence points to the fact that indeed, acquiring the impairment is a success for almost all "true" transabled individuals. Why doesn’t the medical community pay attention to this instead of deciding that they know best (or instead of outright ignoring us?).
(I say "true" transabled individual, as opposed to those people who "just think" they want an impairment, or haven’t done the legwork (pun intended) to learn more about the condition they want, what it would mean in their lives, and doing some work on themselves. This is where therapy I think is important, more as a filter than as a tool to "solve" BIID)
Studies have shown that a majority of people with spinal cord injuries rate their lives as equal or better than before their SCI, whereas a majority of medical personel perceives the quality of life as inferior (see lower on this page for some good stats on those, along with references to medical journals). So is the transabled individual not suffering from this medical bias against disabilities/impairments? How can a medical doctor perform a surgery to provide a condition they perceive as negative? They probably can’t. Yet, it is only their prejudice that says it’s negative, evidence shows that life with the impairment is either neutral or positive. To me, this says that setting aside BIID, my quality of life is likely to be the same, or better, if I were a paraplegic. Add to that the fact that every fiber in my body tells me I *need* to be a paraplegic, and you’ll understand why surgery is such an appealing option.
So, going back to your question, would I get rid of the feelings or fulfil my dream? I can’t give you a sure answer on that. Except that everything seems to point me in the direction of surgery rather than anything else. I keep an open mind about "cure", but you might have some convincing to do, because what you perceive as a negative, with a lowered quality of life, I perceive as neutral, with an equal or better quality of life.
Some interesting statistics
- 86% of spinal cord injured high-level quadriplegics rated their quality of life as average or better than average. Only 17% of their ER doctors, nurses, and technicians thought they would have an average or better quality of life if they acquired quadriplegic (KA Gerhart et al., Annals of Emergency Medicine, 1994, vol. 23, 807-812).
- No differences were found between 190 physically disabled persons and 195 "able bodied" persons on ratings of life satisfaction, frustration with life or mood (P Cameron et al., Journal of Consulting and Clinical Psychology, 1973, vol. 41, 207- 214).
- The duration of disability was positively related with acceptance of disability in persons with spinal cord injury-related paralysis. Severity of disability was of no importance in accepting life with a disability (F Woodrich & JB Patterson, Journal of Rehabilitation, 1983, July-Sept., 26-30).
- 60% of paraplegics reported feelings more positively about themselves since becoming disabled (C Ray & J West, Paraplegia, 1984, vol. 22, 75-86).
- Interviews and tests administered to 133 persons with severe mobility disabilities revealed no differences between them and the nondisabled norm on psychosocial measures. In another study, no significant difference was found between persons with severe disabilities (requiring wheelchair use and daily personal assistance) and persons with no disabilities on quality of life measures (R Stensman, Scandinavian Journal of Rehabilitation Medicine, 1985, vol. 17, 87-99).
- In a study of life satisfaction of quadriplegics, fewer than a third of those who used ventilators expressed dissatisfaction with their lives. There is evidence that life satisfaction scores are higher in persons who have had more time to adjust to disability (JR Bach & MC Tilton, Archives of Physical Medicine and Rehabilitation, 1994, vol. 75, 626-632).
- Spinal cord injured rehabilitation patients were similar to the general population on self-ratings of depression, yet hospital staff consistently overestimated the patients’ level of depression (LA Cushman & MP Dijkers, Archives of Physical Medicine and Rehabilitation, 1990, vol. 71, 191-196.
- Three-quarters of persons with spinal cord injuries rated their quality of life as good or excellent. Amount of paralysis made no difference, but people who used ventilators rated their quality of life higher than those not needing ventilators (GG Whiteneck et al., Rocky Mountain Spinal Cord Injury System Report to the National Institute of Handicapped Research, 1985, 29-33.
- Elderly paralyzed veterans rated their quality of life higher than similarly aged men without disabilities (MG Eisenberg & CC Saltz, Paraplegia, 1991, vol. 29, 514-520).
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4 Comments
2 On 9 April, 2007, Marie said:
Personally:
It’s hard to ignore the benefits of being a hearing person however it’d also be nice not to feel like crap whenever I hear bad noise[1]. Depending on the day someone asks me I’d take a cure on the condition that I remember nothing of being transabled (and my hearing be less sensitive to sounds) or I say “No way, make me deaf!” I want to want to be hearing.
1: http://makemedeaf.blogspot.com/2007/04/good-noise-bad-noise.html - this explains “bad noise”
Thanks Sean for bringing such clarity of thought to a vexed question.
As a disabled person myself, I think that society and the medical profession assume, as they are afraid of disability themselves, that we have bad lives. I know that MOST people think that I am brave because I am upbeat and clearly not fussed about having to wear leg braces and use a wheelchair.
I have so often been told that they think I am awesome because I do not seem to let it get me down. On occasion, when I have bothered to linger, and ask why they might think so, it becomes clear that the majority of people think it impossible to live as a crip. They only see the nasty and negative.
I have had hearing loss over a 10 year period and the audiologist that had the job to tell me, three years ago, that I needed 2 hearing aids, told me so with the face of a funeral director. She expected me to burst out in tears and slash my wrists? When I choose two electric blue hearing aids she felt she had to warn me that it will attract attention. As if so called Caucasian flesh pink does not. The attempt to hide trappings of cripdom, shouts to the world that it is a verboten subject. Quite the opposite is true…. With the obvious bright blue BTE’s, nobody has treated me with anything than normal respect. Nobody pretends it is not there…. yet nobody seems uncomfortable because they surely feel from my attitude that I am not hung up
In fact, now that I have climbed off the conveyor belt of rushed life, I do seem to have a far better quality of life. As my Chinese Medicine Dr says: You have to hear your own footsteps and the sound of your own breath every day. I am happy to say that on most days I can do so.
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1 On 9 April, 2007, John said:
It is very hard for me to imagine what a “cure” would be like. This is because a component of our being transabled must be learned or picked up from the environment. What I mean is that while this compulsion with me ever since childhood and I may have been born with it, some aspects must have been picked up from the environment. Think about it this way, would paraplegia be our outlet if there were no paraplegics because spinal cord injuries, as before the 1940s, were almost always fatal? Perhaps one might desire to become a polio paraplegic or something similar. What I am driving at is that this doesn’t seem to be just an emotional state that might be treatable as depression can be with antidepressants but, as with much depression or other mental problems, we have also learned aspects that have become ingrained into our persona. Treating the ingrained learned components, by means other than surgically fulfilling my need to be a para, is likely to be very difficult. Still, you never know what the future will bring except that it doesn’t look like much is on the horizon!
Sean, your reading material on medical bias looks very familiar–we have similar tastes when it comes to going to the library. From some of the reading that I have done, many–but certainly not all–persons with spinal cord injuries also report sexual satisfaction to a degree that might seem to conflict with established views of what they are “capable of”. All of these studies do seem to demonstrate that the human mind is quite flexible when it comes to satisfaction with quality of life.
And, unfortunately, the studies that you cite also show that the physicians who could safely make us paraplegics, amputees, etc. might have a very hard time seeing things our way anytime soon.