transabled.org

Liz asks the question: Should the NHS or insurance pay for BIID’s to have surgical interventions?
If the answer is no, then surely we should not pay for anybody seriously injured should they drive a car whilst drunk? Or say alcoholics or smokers? What about somebody badly injured in the pursuit of a very dangerous sport? The latter is after all just doing it for self gratification.

I do not have a problem that Liz asks the question, but I do not think that anybody with BIID has created that problem for themselves, therefore they ought to get applicable treatment that WORKS through the same channels as everyone else.

Some with BIID may have the money to have elective surgeries, but many do not have that luxury. Does it then become medical discrimination between haves and have-nots?

Liz writes: People who have surgery for GID, in contrast, don’t need help afterwards
That is not accurate, people with GID need lifelong hormone treatment at least, I know someone with GID who has had 30 surgeries.

//Webmaster edit: comment removed, irrelevant.

inVivo writes: “That is not accurate, people with GID need lifelong hormone treatment at least, I know someone with GID who has had 30 surgeries.”

I myself live with GID, and have been in transition for 5 years now. On one hand, I agree with this statement. I think there are lots of people who do indeed take lifelong hormone treatments, although for some it is not necessary once the natural (unwanted) hormone producing glands are removed from the body. But here is why they do: It is not always to maintain an image of their body, but to maintain health. While body image is surely a part of why we continue much of our treatment, we all need the right amount of hormone to operate properly. Once your natural production is cut out, you need artificial sources to keep your body operating. If not, we’re like an engine with no oil. Things begin to break down. Hormones lubricate every function of the body, including the brain, and particularly, a little gland called the hypothalimus. Without these hormones, the brain cannot get its necessary nutrients, nor can any of the body’s cells, which could indeed be one reason why people with GID feel so inclined to begin and maintain hormone treatment.

Now, as a person with GID, I do not agree with the idea that we are people who do not need help after our transition. Everyone is different. It’s a stereotype to say we all just go on with our lives. That’s not true of many people, regardless of their gender identity and gender/sex alignment. Many people continue various levels of treatment after the fact.

Sean writes: “I would have to disagree with the reason doctors don’t perform surgeries. I think it is a complex question that probably can’t be answered or conjectured on with any degree of accuracy. But I venture to say that there are perceived ethical issues, and there is an (mostly) unconscious bias against disabilities.” People with GID are denied treatment for multiple reasons. One of them is that perhaps GID is not their real diagnosis. Many people show signs of GID but do not actually have it, need it, or desire it. And the surgeries are a way to combat the image we maintain of ourselves in our mind vs. our bodies. However, since the Hypocratic oath requires doctors to “do no harm” many of them see cutting out or off what they consider to be a healthy organ goes against that oath. Doctors take this oath seriously. But talk to Marcie Bowers, MD, one of the leading surgeons in the field of transgender reconstruction–and who is an out transsexual woman herself–about that oath. She’ll probably see it differently, because she sees it through the eyes of one who truly knows what it is like to hate your body so much that you would rather die than to live one more day inside it.

And as for the comment about anorexia, of course it is extremely harmful, but this disorder has been one that has been compared to GID for many years and is a reason why some doctors will not perform elective surgery on transpeople. They say, “You don’t give liposuction to an anorexic person, and you don’t cut off a penis that works.” Makes me wonder, do they cut off penises that don’t work??? No way!!! They give you Viagra.

So where’s the difference here? It’s not about us, but about them. And I have always believed that while it is convenient for those around me, it is not my responsibility to educate everyone I come into contact with. If someone really wants to know what it is like to be me, they’ll have to wait until my soul is ready to be shed from my body and I can be reincarnated (perhaps again) and they can experience it.

Doctors are mostly good people who care about their patients. But they are sometimes also very stupid, judgmental, self-righteous, and ignorant. Many doctors do not feel they need to understand what these disorders are, and therefore will not help anyone with them because if they don’t believe in it, then it doesn’t exist. It must be nice to just dream your life away. It sounds a lot like the American government a lot of the time: I don’t believe in pollution/cancer/aliens/alternative fuels/the internet, therefore it does not exist and I don’t need to acknowledge it at all, or even recognize those who do. What a fortunate life…

the Hypocratic oath requires doctors to “do no harm” many of them see cutting out or off what they consider to be a healthy organ goes against that oath.

I think the issue here is that those doctors who use the Hypocratic oath as a reason not to provide surgery take a very narrow view of things.

I ask them, isn’t letting a condition fester not doing harm? If someone has a cancer do they not cut off the limb that has the cancer? The only difference here is that it is an emotional cancer.

If western medecine looked at well being in a holistic way, rather than considering only the physical aspects, the situation would be quite different.

Sean, I agree with you. Holistic approaches to health are very important and all too often overlooked by western medicine.

Have you ever been to see a doctor and find out that person is a smoker? That’s one very good example of the lack of understanding some physicians have of the big picture.

Reading this post again, as well as the comment, I realise that I forgot an important point when talking of the issue of costs.

Liz mentions the costs to society if surgery, adaptive equipment and other services were offered to people with BIID.

Here’s another question that begs to be asked: What is the cost to society of NOT providing treatment to the transabled community? How many hours of work have been lost because of BIID related depression? How many repeated visit to A&E have happened after unsuccesful self-injury attempts? How many people have killed themselves either attempting self-injury, or because they coudln’t bear it anymore? Do those deaths have impact on society? You bet, family, friends, even the community suffer.

To look at cost with just a dollar sign (or a pound sign, or a euro sign) is rather limited. You have to look at the entire cost to society.

What if someone with BIID is unable to function and work with their full complement of working limbs, but suddenly, if they are amputees or paraplegic, they are able to work and find gainful employment and start putting money back into the system? Have to consider those as well :)

Well said, Sean.

Hi,

Thanks for the detailed reply. I’m a Psychology graduate, and I guess I was wondering if you could convince me.

I understand that you do not choose to have the body image you have, but then neither does an anorexic, or someone with body dysmorphia (eg, someone who will not go out of the house because they are convinced they look so ugly they need plastic surgery), yet the treatment for both of these conditions is that of trying to help the patient come to terms with having a healthy looking body. Anorexia used to have a very high rate of mortality in the 80s, yet now with new psychological methods and drug treatments (mostly anti-depressants), there is a far better success rate.

I know that in America there are some people who have had FAR too much plastic surgery (like the “cat lady”), but in Britain, doctors, even private doctors, seem to be more ethical about following the hypocratic oath in this respect.

“Should we deny today’s transabled individuals a solution that works, because a non-surgical alternative might be around the corner in ten, 15 or 25 years?”

Firstly, in some, perhaps many cases removing the limb is not “a solution that works.” I watched a documentary where a man who’d caused his legs to be removed, then decided he needed his left hand removed. He was trying to come to terms with his left hand, though, because he no longer saw the actual removal of it as being the solution.

“Would you refuse to give someone chemotherapy for cancer because there is a new drug that might heal them with less secondary effect, but won’t be available for another 5 years, by which time they’d be long dead.”

Firstly, you’re comparing chemotherapy, which is a tried and tested method and often the only chance of saving someone’s life, to surgery which is neither life-saving nor tried and tested. As for the second part, actually, that happens all the time. Medical treatments have to go through rigorous testing before they are even tried on human volenteers, let alone become widely available.

“If you are paralysed, it is easier to accept and move on, because there is no cure.”

Just because we don’t all campaign as Christopher Reeves did, doesn’t mean that many, many disabled people wouldn’t jump at the chance to gain better functionality. To return to the previous point, there is a possibility that surgery would help me hear better, but since doctors are still worried that it may make things worse, I will wait and see what the future brings. You may say that’s a choice, but it’s not really – the tiny risk of making things worse is medically not worth it, just as the risk of the removal of a limb not working for BIIDs sufferers is not worth it.

“How many people have killed themselves either attempting self-injury, or because they coudln’t bear it anymore?”

Finally, if you were so desperate to become disabled in a specific manner, there are ways of doing it. Yes it will be painful, and risky, but then it is when a person becomes disabled through an accident. If you want an amputee’s body, then you should realise that a “real” amputee does not have a nicely constructed stump, but will have to endure the scar tissue and skin grafts rubbing against their prosthetic leg. Someone born with eg, half a leg, tends to develop further disabilities whilst growing up, such as spinal curvature. GID first came to light because GPs kept encountering patients who had mutilated their own genitals. Furthermore, gender and sexual identity is more fundamental to one’s self image, relationships and lifestyle, than whether or not you can walk.

I am really interested in your points of view, I’m just not convinced about the surgery bit yet!

I reckon people were saying this sort of nonsense about surgery being a viable treatment for transsexuals in the 40s and 50s. Actually, in the United States, it was a crime of Mayhem in many jurisdictions.

The success rate for transsexuals is better than the success rate for heart transplants – especially in the early days (It’s also interesting to note that GRS predates the first heart transplant by about 40 years). I reckon the same surgical success rate would be had for transabled folk, too.

It’s fantastically naïve to claim that “there are ways”: there are dozens of ways of killing one’s self but the innate human drive for self-preservation is so strong. Likewise, how do you propose someone paralyse themself? Jump/fall out of a tree over and over? Hire a thug for a nice stabbing? How do you propose someone survive the blood loss of amputating a limb theirselves? How about the removal of their eye(s)? Removal of myelin on the nerves?

I am one of the more lucky ones: my major risks of inducing deafness range from tinnitus to poisoning my kidneys and liver; needless to say the latter risks are from more drastic measures. Yes, I could, but others risk far more than ringing in the ears.

I’m sure that there comes a time when the suffering is so great that they will attempt to amputate their limbs (or damage them to ‘force’ a surgeon to do it) or attempt to become paralysed, or try to become blind, or deaf, or what-have-you. Almost sounds like a transperson’s self-harm of their genitals that you cited as a reason for the rise of GID.

And for the interest of clarity: gender identity has nothing to do with sexual identity (one’s orientation). One has to do with who you are and the other with who you’re attracted to.

I disagree that “whether or not you can walk” is any less important than one’s gender identity. I bet people see a wheelchair before they can identify the occupant’s gender.

There are things much more important than gender, at least for me

Marie,

I’ve read your blog, and have wondered – why don’t you put yourself out of your misery, and buy hearing aids, and just block up the tube?

You might then discover that they are initially considerably more uncomfortable than the earplugs you were complaining about.

You say you would like to be become moderately deaf so you can use a hearing aid to control what sounds you can hear… Even if you did have surgery which would ensure you had no side effects, don’t you realise that you can’t really “control what you hear” as the adverts say? And given that you hate noise, what will you do when your hearing aid starts squeeking randomly, as they do?

I still think if you hated your leg enough, you would get a chainsaw and chop it off, chop it up (so it can’t be sewn back on) and dial 999. People have chopped their own limbs off whilst trying to escape using much blunter instruments.

In the same way as most doctors are against being given the responsibility for performing euthanasia, but are not against someone choosing to commit suicide, it is one thing to mutilate yourself, it is another to expect someone to do it nicely and painlessly for you.

As for gender, maybe it’s not the case amongst the people you hang out with, but most people are most disconcerted if they can’t tell if someone is male or female. I know a disabled transexual, and the first comments (able-bodied) people made were always about what gender he was, rather than his disability.

Making one’s self deaf or paralysed or what-have-you is not as easy as dying one’s hair. There are implications that must be considered and any action must be done when timing is right.

Why don’t I “put myself out of my misery” (Friendly tip: Never work for a suicide support hotline)? Because I don’t want to get sacked and risk having a “black mark” on my medical record because some doctor thinks I’m crazy. “Gee Marie, how did you lose your hearing overnight? You should see a doctor!” … yeah…

You seem to make it sound so easy… ah yes just cut your leg off with a chainsaw…brilliant.

I shall ignore you now, you speak rubbish.

the Hypocratic oath requires doctors to “do no harm” many of them see cutting out or off what they consider to be a healthy organ goes against that oath.

Doctors do not take such oath.
And if, they are full of crap, it comtains a section on not cutting, as surgery was not medical practice in history, it also contains a section on not performing abortion.

The medical system seems to have a fetishistic obsession with “healthy bodies” but life is a lot more then this narrow view.

In Vivo,

Yeh you’re right about the hypocratic oath, it’s complicated. But you guys need to prove to Drs that giving a BIIDs person the disability they want will significantly improve their lives.

I guess you’d need to fundraise for a researcher to, erm… research?

Marie: you get hearing aids from private clinics, you don’t need a doctor. And you cannot be sacked because of mental health problems unless it is affecting your work. And it’s a pity you’re so defensive and don’t answer questions.

I must admit, it took me some time to digest your comments Liz. I felt really deflated when I read them. But I’ve had a chance to think a bit more and here are some of my thoughts:

I understand that you do not choose to have the body image you have, but then neither does an anorexic, or someone with body dysmorphia, yet the treatment for both of these conditions is that of trying to help the patient come to terms with having a healthy looking body.

When you’re comparing BIID with anorexia. you’re comparing red apples with green cabbages. It isn’t a comparison you can make, even though you keep returning to this point. If you must compare BIID with another condition, I suggest you compare it to GID. That would be a much better comparison (including according to Dr. Michael First who first coined the term Body Integrity Identity Disorder.

I know that in America there are some people who have had FAR too much plastic surgery, but in Britain, doctors, even private doctors, seem to be more ethical about following the hypocratic oath in this respect.

Hypocratic oath. Yes, well, I’ve said so before and I’ll say so again, but I think it is a rather poor perception of it when you only look at the physical side of “harm”. By not acting, they are in fact doing harm. The mental anguish is equal to, if not worse in many cases, to many physical impairments we might have.

That said, the ONLY mainstream surgeon who performed surgery was a Brit. Dr. Smith was lambasted and nearly saw his medical license revoked not because of “ethical concerns”, but because the hospital where he proceeded with the elective amputations was afraid of the public relations nightmare that ensued after he had performed two surgeries. You cannot tell me that administrators were not aware that he was going to perform those surgeries ahead of time. My take is that they agreed to it ahead of time, and when it became public knowledge, and they saw the wind wasn’t a good one, they turned face.

in some, perhaps many cases removing the limb is not “a solution that works.”

Yes, but on the other hand, in many cases, removing the limb has been a solution that works. I can think of a dozen individuals who have finally received the amputation they needed and who are now happy, relaxed and content with their lives. That is, the 12 individuals I know or have heard of who became amputees ALL are happy about it. It could be argued that 12 is not a vast number, but considering the size of the BIID community, it is actually a fairly significant sample.

As for the person you heard about in that documentary, the obvious question is: did he, in fact, have BIID, or was he misdiagnosed, or have other issues on top of BIID?

you’re comparing chemotherapy, which is a tried and tested method and often the only chance of saving someone’s life, to surgery which is neither life-saving nor tried and tested.

You’re using a circular argument. You’re right, surgery isn’t “tried and tested”. That is, not officialy, the only examples we have are anectodal evidence, done outside of the world of scientific/medical research. But how do you try and test it? The medical community refuses to provide surgery because it’s not tried and tested. Someone, somewhere, has to test the hypothesis, yes? You can’t say “we can’t use this method because we haven’t proven it works”, and at the same time refuse to test the method to see if it would work.

And I bring you back to the very Western perspective you demonstrate when you say surgery would not be life saving. I view *health* and *life* as an equal balance of physical and mental well-being. I am not living. I am surviving. To provide surgery to me would be in fact giving me a life I feel I never had a chance to live.

Just because we don’t all campaign as Christopher Reeves did, doesn’t mean that many, many disabled people wouldn’t jump at the chance to gain better functionality.

You were talking about “accepting and moving on”. This statement appears to make you contradict yourself. I fully realise that many disabled people would jump at the hance to gain better (physical) functionality. Just as I would jump at the chance to gain better (emotional) well-being, even though it would mean losing physical functionality.

You may say that’s a choice, but it’s not really – the tiny risk of making things worse is medically not worth it, just as the risk of the removal of a limb not working for BIIDs sufferers is not worth it.

and

if you were so desperate to become disabled in a specific manner, there are ways of doing it. Yes it will be painful, and risky

I would really like you to describe how you would suggest that I acquire a spinal cord injury at L1 (or even a bit higher), without killing myself or acquiring a traumatic brain injury (TBI), or killing my kidneys? I’ve thought of ways to do it for over 30 years (and I’m not even 40 yet), but haven’t found it yet.

Then, you talk about the small risk of losing more hearing meaning that you in effect don’t have a choice in whether or not you attempt surgery. Well, for many of us, the risk of bleeding to death or getting a TBI means it’s not something we can do.

Many of us have attempted self-injury. Most of us have not succeeded.

And why should we attempt self-injury at a greater risk to ourselves (and society), when a relatively simple surgery could be made available? Don’t you think that the cost to society (NHS in the UK, SSI/SSDI in the US) would be incredibly higher if I attempted to become a para, and instead became so physically disabled that I would need to be on a vent with 24 hour/day of care?

GID first came to light because GPs kept encountering patients who had mutilated their own genitals. Furthermore, gender and sexual identity is more fundamental to one’s self image, relationships and lifestyle, than whether or not you can walk.

Hmm, the first reported case of BIID goes back to the late 1700′s. How long will it take before GP’s realise that this is nothing new and it’s not going away?

The issue here is not whether or not we can walk (or hear, or see). The issue is one of body image. Just like the transsexual feels they are in a body of the wrong gender, we feel our body is wrong. It impacts *every* aspects of our lives, including relationships and lifestyle, ability to work, chosen professions, etc. The impact is as real and profound for the individual with BIID as as it is for the individual with GID.

Yeh you’re right about the hypocratic oath, it’s complicated. But you guys need to prove to Drs that giving a BIIDs person the disability they want will significantly improve their lives.

How can we prove that? There is not a lot of research and writing done (relatively speaking, as there are several dozens articles written on the issue). But for some reason, the research and the case studies that *have* been done ALL avoid discussing the case of those individuals who have become amputees. There is a wide range of individuals that could be available (and I suspect willing to speak to researchers about the impact of the amputation on their lives). But not one single researcher has gone there. While Dr. First makes a brief reference to the success of surgery for one individual, it is a relatively small part of a bigger article.

So, again, how can we prove that surgery is an effective treatment for BIID, when surgery is refused, and the few individuals who were successful at self-injury aren’t being discussed in the literature? I’m afraid that your ableist attitude is part of what causes such a great frustration in me.

Thanks, Sean, precise analysis as always, great work. Just one point to pick with both of you, the oath is “Hippocratic” from Hippocrates who is thought to be its author, see http://en.wikipedia.org/wiki/Hippocrates#Hippocratic_Oath
There may be enough hypocrisy around in medicine and the rest of the professions, but not in that particular place.

Perhaps he meant it in the same way that Dr. Benjamin Franklin “Hawkeye” Pierce always did: “the Hypocritic Oath”.

Hi Sean,

Thanks for the full answers again. Like I said I guess you guys need to get together and get people to research you properly, because in terms of ethical arguments alone, I’m still just not convinced, and I guess many wouldn’t be.

You automatically compare BIIDs to GID, but it is not the only comparison you can make, just because one Dr did.

As for your spine, I would imagine that there are doctors who live in less “ethically bound” countries who would be prepared to perform the surgery, either because they have BIID sympathies (or suffer from it themselves) or because they’ll do whatever for money, depending how you view it. Also, what about in Holland?

You talk about the risk of death putting you off, but if you became paralysed, even through surgery, your life expectancy would be shorter.

I guess my point is that I wish you luck in everything, and maybe in ten years time surgery will be considered acceptable treatment. But in the meantime, until you get research to prove otherwise, you can’t expect others to take the responsibility of inflicting physical disability on you.

I guess you guys need to get together and get people to research you properly

We have gotten together. But what do you call “proper research”? How would you suggest we go about this? The question is “is surgery an effective treatment for BIID?”. How do you prove surgery is effective (or innefective), if you refuse to provide surgery, even on a research basis, because it’s not ethical to do so?

On the topic of ethics, there has been quite a few journal articles written about it. And not all agree that it’s unethical to operate. While I can’t just give you the articles (because of copyright issues), I can give you the references to it. As a psych student, you should be able to get them through your university’s library.

You automatically compare BIIDs to GID, but it is not the only comparison you can make, just because one Dr did.

I was making that comparison LONG before Dr. First made that comparison. And the main reason I continue to make it is that when looking at GID and looking at BIID, and comparing life experiences and feelings, etc, there are so many similarities it is eerie. In fact, you could take the “typical” transsexual’s history and replace “gender” with “disability” and everything would fit.

I would imagine that there are doctors who live in less “ethically bound” countries who would be prepared to perform the surgery

I’m sure there are such doctors willing to perform such surgeries, somewhere. But finding them is proving to be impossible at best. Over the last year and a half, I personally contacted nearly 500 surgeons located in Asia, and Mexico, and very very few responded, those who did refused (I speak a bit about that experience here: surgeon search )

Also, what about in Holland?

While physician assisted suicide (euthanasia) is legal in Holland, it apears that killing people is fine, but elective amputation and spinal cord transections aren’t.

if you became paralysed, even through surgery, your life expectancy would be shorter

I’d rather 10 happy years than 30 years of misery.

you can’t expect others to take the responsibility of inflicting physical disability on you.

This is, again, a very narrow view of “health”. The idea is not to “inflict” a physical disability on me, on *us*. The idea is to liberate us from the emotional trauma of living in a body that is alien to us.

Hi Sean,

I’ve been disconnected from the net for ten days, so have just read your reply.

“The question is “is surgery an effective treatment for BIID?”. How do you prove surgery is effective (or innefective), if you refuse to provide surgery, even on a research basis, because it’s not ethical to do so?”

“But for some reason, the research and the case studies that *have* been done ALL avoid discussing the case of those individuals who have become amputees. There is a wide range of individuals that could be available (and I suspect willing to speak to researchers about the impact of the amputation on their lives). But not one single researcher has gone there.”

Maybe my other email wasn’t clear enough, but what you need to do is approach potential researchers, explain that BIIDs has not been examined from the point of view of those who have had surgery, and that you are in contact with a number of people who have acquired the disability they wanted, and who would be willing to participate in studies. (Obviously, ask them first!)

By that, I mean approach universities and institutions involved in the study of body image.

If a reputable researcher concludes from the study of these 12 people you know that surgery (or whatever they did to acquire their disability) has increased their quality of life, then you stand a chance of BIID being recognised as a medical condition, which will therefore need treatment.

Hope that helps.

Sean – I have chatted with you several times and have always found you to be a real voice of reason. For that I truly respect you. That said I have to say that you made a comment somewhere a couple of onths ago that really made me think (actually most of what you write makes me think!) You said that one of the things that we with BIID need to do is take part in research when the chance is available. I took that to heart and contact the agent from the BBC who is doing a documentary and found the woman most receptive. we have corresponded several times. I agree that we need to take our message out from behind closet doors. I am also looking for institutions here in the States that have focuses on body image. Any suggestions? I truly believe that the only way to assess BIID and treatment options is to provide all options and do long range longitudinal studies of people – certainly more than 12! And the focus needs to be on more than just amputees. Hell even when researching twins they have found and studied hundreds! Our numbers are certainly high enough to have a conclusive representational sample. I am not depressed; I am not suicidal; I am a productive, functional contributing member of society – I am just doing it in a body that I don’t belong in! I can manage my BIID – I have for many decades – I would just choose not to if the opportunity were to present itself! I don’t mean to minimize the impact BIID has had on my life – it is always there and life is often frustrating beyond belief. I for one take your thoughts to heart and agree that forthings to change we need to make ourselves available for study so that someday somebody as ordinary as I am, won’t have to spend 5 decades “dealing” with something that from my point of view is so easily corrected. Thanks for letting me have my say! Take care, man – you do good!!!!!!!! Jack