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.

A painful reminder of BIID

It has been quite some time since I wrote anything here. This is simply because I've not really had anything to say, truth be told. For quite a while I have been able to push my problems with eyesight to the back of my mind and just get on with all the other problems I have in life but of late this has, once again, become very difficult to do.

Part of the problem is that my headaches have returned. These always bring with them the issue of BIID because the headaches are focussed on and around my eyes. They feel like immense pressure on whatever the portion of the head denoted by the Sphenoid portion of the skull is called (is it called the same thing? I don't know) plus needle-like points of pain on the back of my eyes. Painkillers don't always work on this pain, so I just have to suffer through it.

I'm aware that the last time this pain was near-constant it was around the time that I was told that I'd lost part of my vision; specifically an area on the outside of what would be the lower left portion of my vision. I'm therefore wondering if I'm going to end up losing some more vision this time, or whether the pain will pass without whatever is causing it doing any more damage.

I'd love to know what's actually causing these pains because it has my doctors flummoxed. An MRI scan of my head showed no damage whatsoever and my optician said my eyes looked healthy, so the reason for the vision loss I've had must lie outside of the eye itself. It's probably an optic nerve thing or something similar, which might go some way to explaining the pain behind my eyes? Who knows (not me, that's for sure!)

I suppose the only thing for it, at this point at least, is to wait and see what happens next. I'll try to keep you all posted.

Problems with my significant other

As some of you may already know, I have a girlfriend who really doesn't want me to become blind. She sees it as a form of self-harm; believing that I really can't want this and that I'd regret it if I went through with it.

She does seem to be open to the idea of me using no-vision contact lenses, which allow me to achieve as close to the state I need to be in as I'm likely to ever get. I think I can live with this, for the time being at least.

Now it's just a question of finding somewhere that makes them to a decent quality for a reasonable price. All I've found so far is somewhere that sells them for £75 per pair, plus postage. This is, I think anyone would agree, very steep.

Real Life Tests

One thing that seems to be a major stumbling block in terms of being able to treat BIID, aside from the obvious lack of support for the condition amongst the general medical community, is that the majority of people I have talked to don't believe disabling a person is effective treatment, in the long term. In short, the people I have spoken to about BIID don't believe those who suffer from it could cope with receiving the disability their mind tells them they should have.

I have been thinking about how to address this for a while now and it seems to me that the only way to prove this hypothesis either way is to test it. Basically, if we're to receive the treatment we need, it seems necessary to prove we can live with the results of the treatment. In my case this would be to prove I can live my life blind. This would be possible through wearing 'no vision' contact lenses (of which there are few manufacturers but those who provide them make good ones, from what I've seen), learning to use a white can properly (something I've been working on but it's more difficult than it might look) and so forth.

Obviously the contact lenses would need removing every night (from what I can tell, they're not the kind you can sleep in) but that can be worked around (Tesco sells a decent sleep mask that can be used as a blindfold for those times when the contact lenses can't be used, for example). There would therefore be obvious differences between the test and actually living with blindness but these differences are negligible and can be accepted within the parameters of the test.

The question is: what length of time would be suitable for such a test? My initial thought was for something between six months and a year of non-stop, in-role living. However, would six months be long enough to adjust and then actually have enough time to undertake the test proper? I'm not sure. Perhaps a year-long test would be better.

After all, if a person can show that they can live with a disability for a year, having a full life and be at peace with theirself, who's to say they shouldn't have the treatment they need? If it can be shown in this way that the disability provides a better standard of life for the person, surely not providing treatment becomes unethical?

Have cane, will travel

Getting around town when blind is difficult - at least it is here - I realised this a long time ago but it has recently hit home just how bad it is. I tried getting around Cambridge at New Year, when it was dark and there were few people around for me to get in the way of, and that was bad but here it's worse.

Cambridge - the parts I was in at least - has had the good sense to not pave its footpaths with uneven lumps of rock and its pedestrian crossings have the decency to beep when it's safe for people to cross the road. Here the marketplace and most of the surrounding streets (i.e. the main portion of the pedestrianised shopping and entertainment district of the city) are paved with either slabs that are unevenly laid or cobbles dating back to the Victorian era at the very least.

I have found one pedestrian crossing that beeps when it's safe to cross and even then it's hard to hear over the noise of the traffic on the nearby not-quite-a-motorway which, because our civic leaders have a sense of humour, runs through the middle of the city. This town is a death trap for blind people.

You might be wondering why I complained about the cobbles and uneven paving slabs. The reason is simple: to use my cane, you have to run the roller tip along the floor in front of you. I believe it is canes of this sort that influenced the addition of lumps to the paving slabs at pedestrian crossings - when you feel the cane run over them, you know you're at a crossing. It's very useful.

Now, bearing in mind the fact that when out and about I'd be running a cane along the ground, when I hit cobblestones, the cane starts to bounce and more often than not I'll catch it between the cobbles. This usually stops the cane moving, but I'm usually walking forward when this happens. Ever had five feet of metal rammed into your ribs? I have; it's not pleasant. The same thing happens with uneven paving slabs.

I'm sure there's a workaround for this but I've yet to work it out.

Don't worry, I'm not dead

It's been a few months since I had the time to write anything in here and I'm starting to get people e-mailing me to make sure I'm still alive. Rest assured, I'm still here. The depression BIID can cause has not made me do anything stupid.

Anyway, I'm back now I have free time again so rest assured I will write something when I have something to write.

Comparisons with other conditions

I received an interesting and thought-provoking comment on my last entry that I thought warranted its own post in response, as I could see it being a long reply. I've linked to the post with the comment in question but the gist of it is this:

"What do you feel about the comparisons some people with BIID make between that and GID/transsexualism, and the connection some people make to Munchauser's Syndrome?"

The comparison with GID is definitely an interesting one on two levels, firstly because both conditions can cause an equal level of suffering and also have a disabling potential to them, in that the sufferer can become unable to function in life. I know of a great many people with GID who have at some point been unable to leave their own homes because they couldn't face the world at large due to their transsexuality and I hear occasional comments from BIID people that say pretty much the same thing.

The main reason BIID and GID are an interesting comparison is in the subject of how they manifest themselves. What's the effect of GID? A strong, possibly disabling, insistence that a person's physical sex is opposite to that of their mental sex; i.e. a condition where the brain tells you you're one thing and your body is another. What's the effect of BIID? A strong, possibly disabling insistence that a person's physical state is different to their mind's 'body image'; i.e. a condition where the brain tells you you're one thing and your body is another.

It's quite possible that they are entirely different disorders that give the same result but it's equally possible (because let's face it, there have been no decent studies of this condition) that they're the same condition manifesting in different ways. The comparison is therefore very interesting.

Munchausen Syndrome, however, is totally unrelated to BIID, in my opinion. I can see why some people would see a similarity but only in the same way as I can see why some people think transsexual people are just "gays who went too far"; i.e. they're ignorant and/or wanting to cause trouble.

In the case of Munchausen Syndrome a person feigns an illness or condition to get attention but someone with BIID emulates a condition in order to seek a release from the symptoms of their condition. I can't think of a single BIID sufferer who wants attention either, in fact the ones I've spoken to seek to be left alone while they go about their business. BIID people seem to have a massive hangup about being spotted and 'outed', so to speak, while emulating their desired condition.

So, in conclusion I'd say any connection with Munchausen Syndrome is a false one and could potentially be offensive, too.

Getting to grips with screenreaders

As readers who have been following my progress for the last few days will already know, I am now learning to use the Orca screen reader. This is turning out to be a fantastic tool that's much nicer, in my opinion, than JAWS was; although I will admit that I did not give JAWS a real test drive because I was annoyed that it tried to take over my computer and broke my browser.

Orca has its problems, that much I will concede. The voice is still annoying but I'm working on finding a better voice for it (I'd like one that doesn't sound like a synthetic man, is that too much to ask?) but I was impressed with the range of regional accents it has to offer.

I'm once again writing this entry using the screen reader to help me, which feels so good and so right. I haven't managed to get up to my usual typing speed yet but I'm working on it and I'm sure I'll get there in the end once I'm used to waiting for Orca to tell me what I just typed (or maybe I'll turn that option off once I'm more confident).

I'm still having problems getting the screen reader to read websites for me but I'm now wondering if this is because of a badly programmed layout on the sites or if it really is down to me not understanding how these things work. I had Orca read out a whole paragraph of a website earlier when I used the 'speak entire document' option so I'm getting there!

But now I have work to do so I'll end this entry now and get on with work, then a bit more practice is in order, I'm sure! :)