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BADD - Two impacts of disability discrimination on BIID.
Written by Sean on Tuesday, May 1, 2007
Today is Blogging Against Disabilism Day (BADD). I made an entry about it last year, and it was nearly not accepted into the collection of entries, but after some exchanges, it was accepted. There are so many issues that could be raised that tie the issues of fighting discrimination on the basis of disability and those encountered in relation to Body Integrity Identity Disorder (BIID). I’d like to raise two of those at this point: First, how amputees often do not perceive themselves as having a disability, and how that reflects itself in the BIID community; and second, how the medical community has a negative bias against disabilities, and how that impacts the struggle of the transabled individual.
Wow! Tall order I set myself. I’ve already discussed some of these thoughts in some way in other posts, but I think they are important issues that need to be brought up again, particularly in view of BADD.
Amputees
I will readily admit to generalising here. Not all amputees are guilty of the behaviour I’ll be describing, neither are all amputee wannabes. I mean no offense, and only am stating things as I see them.
It seems like many amputees don’t see themselves as having a disability. Yes, they are missing a leg, or an arm, or several, or any combination thereof. Yet, they aren’t disabled. They will not associate with, nor want to be perceived as, having a disability. This is understandable considering that society so often associates disability with helplessness (as an aside, it’s one more poitn in favour of talking of impairment vs disability).
The lack of a limb, they claim, does not automatically put them in the same basket that using a wheelchair does, for instance. I don’t particularly agree with that attitude (in as much as one accepts the idea of labels to start with anyway). But it’s there.
Turning to the attitudes of amputee wannabes, it appears they, too, are adopting that attitude. This might readily explain why so many amputee wannabes are saying that they are the only people with "true" BIID, that anyone who wants to be disabled (use a wheelchair, be blind, deaf, etc) can’t possibly have BIID as our conditions are vastly different.
As Paradox commented on another post:
I just feel that disablism (or ableism if you like)seems to to be very prominent in amputee biid.
I think the very idea of a non functioning limb is even worse in their eyes than non amputation. There is a sense that like many real (not by choice) amputees in the wider world they look down on other disabilities. Perhaps the idealism of a specific body type engenders disgust at any other with the normal body seen as bad but the disabled body seen as even worse unless the disabled body meets the “ideal”.
Amputees don’t view themselves as people with disabilities, so if you are an amputee wannabe, viewing yourself as an amputee isn’t viewing yourself with a disability. To imagine paraplegia, which *is* clearly a disability, then, it must be different.
In other words, the prejudice against disability often found in the amputee community reflects itself in the amputee wannabe community, and as a result, a great rift is caused in the BIID community. Where we should fight, united, we are separated, and as a result, we don’t stand a chance.
Doctors
Studies show that the medical community has a negative bias against disabilities. That is, they think that the quality of life of an individual post-impairment is lower than prior to acquiring their impairment. To the tune of 4-to-1! Yes, over 80% of medical professional perceive disability as a negative. Interestingly enough 86% of the people with a significant disability that were surveyed stated that their quality of life was equal or better post-injury than before. This disparity makes one wonder.
The medical community has steadfastly refused to provide surgical solutions to the "BIID problem". They claim that not enough research has been done. They further claim that the Hippocratic Oath stops them, based on the "first do no harm" tennet. Then they say it’s not ethical. And they put a barrage or argument against surgery for transabled individuals. But what if at the very basis, the refusal is based on this prejudice against disability?
It’s true, there isn’t as much research into BIID as there could be, and about half of the research uses poor subjects for their case reports. When looking at those individuals who have acquired an impairment and who fit the "general profile" (in as much as there is such a profile), they report being happy. But almost no published study talks about that.
It’s also true that doctors aren’t supposed to do harm, but I suggest that it is in fact doing more harm to sit by as a spectator, while transabled individuals suffer, than to provide a physical impairment. They would chop off a leg if it was cancerous, why not provide a physical impairment when a condition impairs your day-to-day activity?
As for ethics, it is an ever changing topic. What is ethical today wasn’t necessarily so 50 or a hundred years ago (think of breast implants, for instance, it wasn’t long ago that it was not so readily accepted, yet now, it’s relatively benign).
And so I wonder what the situation would be if there wasn’t such a medical bias against disability. Would the medical community work with us to find solutions that work for us? It’s quite possible.
Parting thoughts
These were just two examples of how Disableism impacts the lives of transabled individuals. One from within our community, and one from outside of it.
[tags]BADD, BIID, Transabled, Amputee, Wannabe, Doctors, Surgery, Prejudice, Bias, Ethical, Disability, Deaf, Blind, Paraplegic[/tags]This entry appears in BADD - Impairment Specific, Sean's Thoughts, Thoughts. You can follow any responses to this entry through the RSS 2.0 feed.
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8 Comments
Doctors: Doctors see their patients when there is a problem. A doctor is trained to find problems. They are inclined to focus on the problem, not on what is correct. It would be rather pointless for any doctor to spend hours examining a patient with an obvoius brain tumor for the purpose of listing what is not causing a problem for the patient. Its not a bias, just a result of the nature of their job. A doctor may spend years treating a patient post injury, focussing only on say the problems caused because the patient uses a wheelchair. The quality of life of the patient is totally irrelevant here, including what has or has not been accomplished in physiotherapy.
3 On 1 May, 2007, Sean said:
I have to disagree with you Ronald, quality of life of the patient is not irrelevant if the doctor believes it is lowered, when the patient believes it is equal or better.
I have known doctors that approached treatment with a “social model” attitude, and invariably, patients were happier.
It is a mistake (current in a western perception of medicine) that doctors are there only to treat a broken body. But health comprises more than just a physical element, it has to be looked as a whole. And part of “health” is quality of life.
If the doctor perceives quality of life as low, then they perceive health as low.
It *is* a bias against disabilities (or perhaps you’ll prefer to think of it in terms of a significant deviation from the norm). I’m not saying it’s the doctor’s fault, they are the result of the education system, and society. But it’s there, we can’t avoid it.
I hope you don’t mind if I play devil’s advocate here.
IIRC paralysis does make the body weaker and more prone to infection. Don’t most people disabled by paralysis have a shorter life expectancy after paralysis than before? If this is true, doesn’t it then create an ethical conflict by statistically lowering the patient’s life expectancy regardless of their desire for impairment?
5 On 2 May, 2007, Sean said:
rorschach, life expectency is not particularly lowered anymore, although it wasn’t long ago that life expectency was much shorter. That said, I’d rather live ten happy years than thirty miserable ones. I don’t think that the shorter life expectency aspect, if it were significant, would really be an ethical issue, as the “real” problem with ethics is the concept of “harm”, if you look at it only as harming the body being unethcial. If you agree that by harming the body, you heal the mind, then the possibly shorter life expectency is relatively unimportant.
Paralysis, per se, doesn’t make the body more prone to infection or weaker. There are real related possible problems, such as pressure sores, but an amputee could also develop skin ulcers.
Testosterone also lowers life expectancy due to an increased risk of heart attacks, yet they give it to female-to-male transgendered people.
Re: Testosterone also lowers life expectancy due to an increased risk of heart attacks, yet they give it to female-to-male transgendered people.
Testosterone that is naturally produced in a biological male will increase the risk of all kinds of diseases and conditions, such as diabetes, liver disease, bone cancer, and lymphoma. Testosterone lowers the body’s ability to combat bad cholesterol, which also causes circulatory diseases.
Whether or not a person will have a higher risk of getting these diseases is taken into account before starting hormone therapy, whether a person is biologically male or biologically female. We all react to hormones in the same way, with the same changes, but at different speeds and different levels of risk.
If a person is transsexual and they undergo hormone replacement, it is usually under the care of a doctor and they have regular check-ups, just like any other person. I would hate to think that you’re saying it is dangerous to replace a person’s hormones when they transition, or when they are no longer able to produce those hormones on their own–indeed, it is the contrary. It is significantly more dangerous to not allow HRT to take place. With someone who does not have adequate hormone or adequate ability to use hormone, serious health complications take place. For people who are denied the ability to transition fully and successfully, suicide is much higher, as well as clinical depression, self-injury and self-mutilation, and drug and alcohol abuse. I see the benefits of such therapy.
When one is paralyzed, certain physical changes do take place and if it is serious enough, paralysis can cause complications. This is because when nerves break down, the organs they once served begin to break down, too. Organs below the injury line, like the muscles of the limbs, break down and atrophy begins immediately. When this happens to vital organs, it can lead to death. This is most common in the skin, bones, and muscle tissue. It also affects cartilidge, tendons, veins and arteries, and other connective tissues.
The question is not does this lower life, it is does this lower life more than depression, anxiety, social stigma, or suicidal tendencies?
I say the answer to that is treatment is always better than no treatment. Since there are no standards for BIID treatment, I guess only time and advocacy will see that changes happen.
I just ran across this website because I have a knot in my stomach and am totally amazed at what I came upon on. I have all of my limbs and I am not in a wheelchair but I feel like I need to comment. I not know why but not all people are bias against people who do not have limbs or who are in wheelchairs.
There are two people that I came upon, one that was in a wheelchair and another who legs were both amputated.
Wheelchair:
In the supermarket one day and saw this beautiful guy. He was in a wheelchair. Did not know his circumstances but he was very attractive. I looked up and his girlfriend gave me this look like: “Yeah he does look good”. I guess she thought I was looking at the wheelchair, but I was looking at him. This guy was extremely sexy and if I had the chance, the wheelchair wouldn’t have been an issue.
Amputee:
I was on the bus and this guy walks on th bus with not legs. He had his look as if he was coming off of work. He had his briefcase and suit on. I always use this guy as an example towards my child father who is has mental disabilities.
Maybe I am saying all the wrong things to you all who are in wheelchairs or amputees but what else am I going to say. Either we can lie and act like we are trying to protect your feelings or we can tell our stories just as you all are.
I am not bias towards anyone and totally respect people who do have some sort of disadvantages. Mentally you may not have a disadvantage but physically you do. I am overweight and I am not going to act like I do not have any disadvantages and their are many. I know how if feel to be look at and stared at and also laughed at. But I do not have a problem with myself inside. People who may have the whole package are the ones who do not have their sanity, and believe me, I know a lot who do not.
I totally admire you all by expressing your feelings and letting many know about your strengths, weaknesses, and what pisses you off. I think that everyone can learn from blogs like this. People do have feelings and they need to be heard. I am not trying to offend anyone…Keep on spreading your words and thoughts….LOVE!!!
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1 On 1 May, 2007, Sophie said:
I only hope it doesn’t take 50 or so years like it did for people with GID :(