19 December 2007

A discussion of views on BIID

While doing a search through Google's Blog Search tool (very useful if you're looking for Joe Public's opinion on something or, like me, if you're sat at home bored because you're too ill to go out!) and I came across an interesting post with a reference to BIID in it. The majority of the post is thought-provoking in its own right, and much of it I can relate to myself (because - shock, horror - I have a disabling condition of my own on top of my sight-association issues) but I'll discuss all that later in this post, when it becomes relevant.

The first part of Dr McClung's discussion of BIID is something I most definitely agree with. She seems to share my distaste for the 'Transabled' movement; which anyone who knows me or has discussed 'transablism' with me will know I have very little time for. The term itself is annoying enough but the idea that we could somehow get better treatment by being labelled as mentally ill just infuriates me. It seems to be the case that some people who have BIID think that because transsexuality has been classed as a mental illness (which it most certainly is not - it's the same problem that homosexuality experienced; some berks in the psychiatric community decided 'different to me' equated to 'mentally ill' and thus demonstrated their unfitness to practice *takes deep breath*) and transsexual people can get medical treatment for their ailment then classing people with BIID as mentally ill will mean they can eventually get treatment too. This not only demonstrates flawed logic but also a lack of knowledge of history. Transsexual people were getting treatment decades before some wanker decided they were mentally ill.

Anyway, back to the original point of this post. As I said, I agree with a lot of what Dr McClung (I'd use her first name but I don't think that would be polite, since we don't know one another and I'm one of those very formal English people that so many Americans on the Internet find so amusing) says in her first paragraph on BIID because, let's face it, it's mostly true; the majority of people with BIID have no medical expertise and are clinging to anything that validates their point of view. I'm not going to argue the validity, or lack thereof, of doing that because if that's how they want to live their lives then go ahead and do it, just leave me out of it. There is one part of the first paragraph that doesn't sit well with me however:
"These are people who have a strong desire to have a particular disability and feel depressed and incomplete without it."

I don't feel depressed and incomplete because I'm not blind. It does cause occasional bouts of depression, yes, but it's not a continual experience. In this respect, BIID does have one passing resemblance to gender identity disorder: neither has to cause a continual state of depression in order to be present. I know many transsexual people who were very much aware that they were transsexual but who did not suffer from depression all the time. Furthermore, I'm very much a whole person despite my condition. Removing either my vision or my sense of disassociation with my vision (either is fine with me - treat either the symptoms or the problem if you can, just make it go away one way or the other) will not make me feel 'complete', it will simply remove a large burden on my life.

I'm sure this will cause controversy but don't I always? Hell, I cause controversy just by existing: some people say I don't have BIID because I don't "want" some (or all) of my limbs chopped off and some people argue over my views on everything else, so why should this be different? Truth is, I don't really care. :) You're entitled to your opinion, I'm entitled to mine and if we can't agree then at least we can probably discuss things like adults.

For the record, I define Body Integrity Identity Disorder (I think 'Integrity' and 'Identity' should be the other way 'round, too) as: "The assertion, continual or temporary, that a person should have one or more specific disabilities." It's a fairly simple definition but it covers everything I've experienced because of this condition, as well as everything I've read of other peoples' experiences of the condition.

Dr McClung then goes on to state that many BIID sufferers are ignorant of disability issues. To be brutally honest, this is probably true. A lot of people, regardless of their background, are ignorant of disability issues. How many deaf people, for example, are fully versed in the issues faced by a wheelchair user, for example? There is ignorance on all sides; it's one of the problems caused by being human. She then goes on to state:
"I have yet to find a BIID who knows anything about neurological or other conditions involving mobility."

Which is where I come in. :) I'm going to take a moment to describe my current situation, so the playing field is clear. This is a little graphic, you might want to pass it by.

Beginning description of medical state

I have a chronic, undiagnosed (despite years of tests and the opinions of various specialists) illness that causes pain, restricted movement and all kinds of other lovely side-effects. Just sitting here writing this is difficult because of the pain it is causing so I'm having to take regular breaks and walk around, which is quickly sapping my strength.

On some days I can walk unaided. On some days I need a walking stick. On some days I can hardly walk at all. I've spent days on end in bed because I simply haven't the strength to get up. Five years ago I spent several weeks in bed, sleeping almost twenty hours a day simply because I had no energy and needed so much rest. I have varying degrees of muscle tension problems in all four limbs, ranging from almost no tension (i.e. the limb is loose and lifeless) to so much tension that the limb is solid and cannot be moved without someone helping me, and everything in between. There is no signal that the level of tension is about to change and no pattern to when it will change.

I regularly cough up thick mucous. I often cough up blood. I occasionally have trouble breathing, experiencing either a pressure on my chest; stabbing pains when inhaling; or simply finding that breathing in doesn't suck air into my lungs. Despite all this, tests always find my lungs to be clear.

I have numerous intestinal problems and often find myself constipated, or the exact opposite. I will regularly "shit blood", to not put too fine a point on it. I am also often nauseous and I've been known to throw up my anti-nausea tablets; which is ever so useful.

I have intermittent liver problems. Sometimes tests show my liver working normally, sometimes they don't. I've had a liver biopsy that scared the doctor examining it because it was so inflamed. On ultrasound scans I've been shown to have blood flowing "the wrong way" (the doctor's words, not mine) through parts of my liver. On other occasions, the ultrasound has shown my liver to be a 'little off' but otherwise working fine.

Finally, I suffer from seizures of varying intensities ranging from slight tremors and clumsiness (I drop things a lot, or toss them away) to massive seizures that would be akin to a Grand Mal if I were to lose consciousness (which I don't - I am unfortunately always aware of what is going on, even though I can't do anything about it). I shake a lot and regard it as a good day if the only problem I experience is the shaking I'm experiencing while I type this.

Here ends description of medical state

I therefore class myself as having at least a passing knowledge of the issues surrounding neurological conditions and mobility, having experienced several of them myself. However, if I'm brutally honest, I fail to see why this should be an issue. She mentions how one BIID wheelchair user walks when walking his dog because it's more convenient to do so and to be honest, I don't see a problem with this. Perhaps it's our different perspectives that allow this difference of opinion?

If the wheelchair user in question can deal with their condition long enough to walk their dog without needing to use the wheelchair then surely that is a good thing? Surely that means there's a chance that they could, at some point, extend that ability to deal with the condition and eventually happily manage without having to use the wheelchair? I personally like this idea, it means there's another alternative to the rather drastic method of treatment that so many BIID sufferers focus on. It's the approach I've been attempting (with some success) myself, because let's face it: people who are not disabled have an easier time of things.

Rather than attacking the BIID sufferer who finds they can forsake the normal route of 'pretending' (I hate the term but I can't think of another right now) as 'therapy' (ha!) for a while, let's embrace that and work with it. If there's the potential for more than one route to treatment for this condition, let's work on it.

Finally, with regard to the point Dr McClung makes about feeling sorry for those of us with BIID who are missing the point if all we get out of a wheelchair if feeling happy. It sounds immature but I think it's her that missed the point here. The current methods of coping with BIID aren't about being 'happy', they're about getting by. The methods we use, be they a wheelchair some BIID people use or the cane and screen reader I use (although I don't use them all the time because I'm working on getting myself to a point where I don't need to), to cope with BIID are as much an aid to us as they are to the people they were designed to help. They help us live our lives to the fullest extent we can, just as they help people with more recognised disabilities.

In the end, saying we miss the point by wanting to be happy belittles our situation in the same way that the assumptions of some able bodied people toward those with disabilities belittles the disabled person.

That's all I have to say for now. Thanks for listening.


Kyla said...

It's nice to see someone writing about the BIID condition with a different perspective.

I agree with the position that there are (theoretically) two routes to treatment for the condition: to create the physical disability perceived as necessary, or to eliminate that need. However, the evidence (anecdotal, i confess - properly controlled studies have not been done) suggests that the latter approach can do no better than provide the person with a minimally acceptable level of function (if even that much), whereas the former actually improves quality of life to a level approaching (and sometimes exceeding) that of a 'normal' person.

In short, the difference is between eliminating the suffering and generating methods for coping with the suffering. While there are entire religions based on the premise that to endure suffering is the essence of the human condition, i do not subscribe to any of these; if there is a method that can be used to reduce or eliminate a form of suffering, i see no reason to eschew it and favour an approach that simply embraces the suffering and develops coping mechanisms for it.

If a method to eliminate this form of suffering didn't exist, then i would wholeheartedly support the development of such ways of coping and getting by, but it's extremely frustrating to settle for this when the medical procedures exist to correct the problem, but are merely denied to us.

Sorry if this is a bit rambling and incoherent, but i'm tired.

Unrelated to BIID (at least i THINK it is)

Also, your description of your medical condition sounds disturbingly familiar. Until reading this, i'd never seen anything coming so close to describing my own collection of physical symptoms, and i'd usually dismissed them as being an unrelated collection of different health issues. Other than the liver issue, i've shared all of those - including much medical testing (very expensive here in the US - especially when they come back negative for any known condition, so insurance rejects the claim as 'unnecessary' or even frivolous). It's interesting that you mention it here.

April said...

While I'd usually welcome comments and discussions regarding what I'm discussing, in this case I'm angered by what you've written, Kyla.

You say you agree that there are two treatment routes, then immediately show this to not be the case with your inclusion of the idea that non-surgical treatment would only work in theory; then follow this up by claiming it would only give "a minimally acceptable level of function". This is, to not put too fine a point on it, bullshit and serves only to bolster the standard "I want X removed" mindset that plagues BIID websites.

Surgery is not, and never will be, the only worthwhile method of treatment for this condition and the evidence for the success of surgery is equal to the evidence of the success of non-surgical therapy.

Anonymous said...

This is a message for April... I've been reading your blog and think you go a long way towards exploring the complex, many-layered, and fascinating issues about which you write. I've got an interest becuase, like you, I'm a writer/ researcher/ film-maker and I've been working on complex and challenging social/ moral issues for years. I don't have anything specific going on at the moment... but I'd love to have a private, totally off-the-record e-mail exhange or chat with you some time (you don't even have to tell me your name or identity if you don't want to!)... this is just something that I'm genuinely interested in in all its subtlety, and I'd like to know more and make sure I properly understand. You can reach me at paul.csmc@googlemail.com - I really hope to hear from you, however you should wish.

Thanks very much.

Micheal Johnson said...


I too have BIID (the blindness variant) and so far I have not commented on your blog and I know that you are not very active on this blog anymore so I don't know if you will ever read this but I have a few things that I would like to highlight with regards to the points that you have made.

I agree that it is important to look for alternative ways of "treating" BIID (besides surgery) but there are two points that I would like to make:

1. Regarding your statement:

Rather than attacking the BIID sufferer who finds they can forsake the normal route of 'pretending' (I hate the term but I can't think of another right now) as 'therapy' (ha!) for a while, let's embrace that and work with it.

Personally that is not the attitude that I have picked up within BIID communities (I am thinking in particular of transabled.org which, although no longer available on the internet, is still a valuable resource when researching BIID, in my opinion). The attitude that I have picked up is more that, if pretending helps one to copye with BIID then by all means do it, but if one does not need pretending in order to cope then it is not frowned upon if one does not pretend.

2. Regarding your statement:

If there's the potential for more than one route to treatment for this condition, let's work on it.

While I agree with the idea of looking for alternative treatment options (and indeed a lot of people with BIID are focused on the idea of surgery becoming medically endorsed to the exclusion of other treatment options), I feel that the place where attention is lacking is not with regards to eliminating the need for pretending but rather that people with BIID should be working towards getting pretending to be a medically endorsed treatment option rather than focusing on surgery. I have read of a few cases of people with BIID who have doctors/therapists who are supportive of the person's pretending (if it helps, that is, which it usually does) but they still have to lie about their condition to others (including e.g. support staff at supermarkets, if the person has blindness-variant BIID). I would like to see more recognition of pretending as a form of "treatment" for BIID, and some system whereby people diagnosed with BIID are entitled to some of the same benefits as those with the actual disability (such as adaptations in the workplace, which is still currently only possible either by lying to one's boss about one's health - and that usually fails when insurance is required to pay for special equipment - or hoping that the boss is understanding and prepared to make the required accommodations).