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! :)

Further adventures with screen readers

Well, I've been fiddling with Ubuntu 7 Beta and I have to say it's a nice system, if a little on the bulky side with regard to the packages it installs. It doesn't come with a few packages I like but these never seem to be installed by default on any system so I can't really expect them.

The new screen reader, Orca, is an interesting package and it works out of the box! In fact I'm using it right now to write this entry. The only problem I have with it so far is that the keypress that I expected to cause Orca to read the entire contents of a window doesn't seem to work but I'm sure I'll get that sorted out at some point. The other big advantage of Orca (and Ubuntu/Linux in general) is that it doesn't cost a fortune to buy, unlike JAWS does!

I'll be playing with Orca for a bit longer as it seems to definitely be my screen reader of choice and the voice is nicer than JAWS (it even comes with a default set of weird English accents - I can make my computer sound Lancastrian, for example!) even if it does still rather synthetic.

Here's a question for you though: why do all the screen readers I've tried seem to have a male voice only? I want a nice, female voice for my computer damnit!

Screen readers

One of the main problems I face with regards to attempting to live without vision is that of access to technology. As my bio says, I'm a freelance writer and thus the word processor is an important tool for me, I simply couldn't live without it because it is such a fundamental part of my work.

So to live without vision I need to be able to still access my word processor. Other tools (my dictionary, encyclopaedia and the Internet, for example) would be useful too. Because of these, I really need a decent screen reader. However, the idea of a decent screen reader seems to be way off in the future because right now I really believe there just isn't one. I've tried two different ones on different operating systems and I hate both of them.


On Windows I looked at JAWS, which is generally regarded as the best screen reader available to PC users. My first impression was that it installed very nicely, with each part of the installation process being spoken to me using a voice that was easy to understand. The installation controls were simple and effective. I installed it without having to look at the screen (a good thing, I'm sure you'd agree!) and I was very much impressed. However, that's where the good aspects ended, in my opinion.

Once installed, the voice of the software changed to something that sounded more like the awful synthetic drawl of Microsoft's Narrator (ever tried to use that as a screen reader? It's terrible, it only describes buttons, not what's on screen!). It did a good job of telling me there were 23 icons on my desktop and was very good at explaining which buttons I was typing on my keyboard. Initial impressions were therefore good but the voice was a serious disappointment since it clearly wasn't the voice that had been on the installation, which made me question why they had a better voice for the install program than the actual program.

Once it was installed I was told I had an important e-mail to read (Gmail notifier is great, I must add) so I booted up Firefox, my browser of choice. I forget whether JAWS told me about Gmail's notifier of if I was looking at the screen by this point to see whether JAWS was describing everything accurately. I was certainly looking at the screen a minute after loading Firefox however, as JAWS screwed it over!

I'm willing to give up some things in order to get a working screen reader so I can work blind. However, the Google search bar is not one one of them. For reasons unknown to me, JAWS seems to think that when I click on the search bar on Google and start to type so I can search for something what I really want to do is access JAWS's keyboard-driven extra features. No, no, no! I don't want that at all! Annoying software that takes over my computer without asking is not what I need. I quickly turned the software off so I could wrestle control of my computer back from it.

Having discussed JAWS with some other people since this happened it seems it takes a lot of setting-up to get working properly. Perhaps when I have a couple of weeks free I'll give it another go but I must say it's a massive disappointment that it doesn't seem to have basic functionality right out of the box.

The second screen reader I tried out comes bundled with Ubuntu, a version of Linux that I really do enjoy using. I can't remember its name right now but I've just downloaded the Beta for the next version of Ubuntu and I'm happy to see this particular screen reader has been replaced. Obviously other people had the same poor experience as I did, then.

I run Ubuntu on two computers, one is a large desktop with an AMD64 processor and the other is a small laptop running on celery (my preferred term for the rather low-par Celeron processor as I often think running a computer of celery would actually make it work better). The two systems have different architecture and different sound cards. Neither system works with the screen reader bundled with Ubuntu 6 for one simple reason: the software to run the screen reader installs and runs perfectly (it also doesn't try to take over my machine, which is a bonus!) but this software relies on a separate piece of software to actually synthesize the voice the screen reader speaks with. The voice software doesn't want to work on either computer.

So I'm going to install Ubuntu 7 Beta today and see if I can get a nice speech synthesizer working. I'll report back later with news on how this one fares. :) Wish me luck! (I might need it)

A temporary reprieve

While it is sometimes possible to go for days without the bad effects of BIID manifesting themselves too greatly (I have to admit that they are always there no matter what but I don't think you can expect them to go away when it's your eyesight that is the problem) there is always the possibility that at some point you're going to have a bad day or for some other reason need a reprieve from the problem, even if it's only temporary.

To this end I have been looking into a number of solutions that would help me out and I have identified three possibilites, each with their own advantages and disadvantages. I'll go through each of them in turn.

The first solution is for me to use a blindfold of some kind to block out my vision. This is a simple and effective solution that rids me of my problem quickly and efficiently. It's also a reasonably cheap method, which is a plus. I've refined this solution somewhat by using a sleep mask I picked up from my local supermarket. This is better than a standard blindfold in that I don't have a load of fabric tied around my head when I use it and I'm sure everyone would agree that is a definite bonus. Of course this solution can't be used outdoors so if you opt for the blindfold option you're still faced with all the problems of BIID whenever you step outside.

The second option helps with this somewhat. It's a modification of the blindfold solution that replaces the blindfold or sleep mask with something that is less likely to lead to awkward situations while outdoors. The solution is to buy a pair of sunglasses (for me they have to cover as much vision as possible because my self image is total visal field blindness, not partial blindness) and paint the insides of the lenses black (or whatever colour the lenses are if they're not standard dark lenses).

By painting the insides you end up with sunglasses you can't see out of but which, for most intents and purposes, still look like sunglasses. You really need very dark lenses (or preferably mirrored lenses) for this to work properly otherwise anyone talking to you or up close to you will notice they can't see your eyes through the sunglasses as they'd normally expect to be able to. So unless you're willing/able to get sunglasses you can successfully modify, this option isn't a good one either.

The third option is, in my opinion, probably the best but it's also the most expensive. There are outlets, particularly on the Internet, where you can buy specialist contact lenses and some of these are "no vision" lenses, like the ones used for the Daredevil film. They cut out your vision by having opaque colour over the area where your pupil would be, effectively blinding the wearer for the duration they are worn. These lenses are expensive however, so if you go for this option you've got to expect a decent initial outlay.

Of course being contact lenses they also require efficient care and upkeep or they'll get damaged. You've also got to be sure to clean them properly or they get covered in bacteria that can damage your eyes. I make this note because blinding you isn't the only damage bacteria can do to the eyes and while blindness would be a nice side-effect in this case, the other problems aren't welcome!

Introductions

I've had this blog for some time now but I've never been able to bring myself to discuss anything in it. To discuss something here would be like admitting there was a problem, facing up to it and maybe having to do something about it and I never wanted to do that until very recently.

The reason I was scared - and that is the right word - to admit there was a problem is because when I looked for help identifying what was wrong with me I found the world at large saying I was insane. The world tells me I have some kind of mental fault, in some places there were people telling me I was sick, that I couldn't possibly be a normal person and feel as I do. Others thought I was degrading those people with "real disabilities" simply by virtue of existing with the condition I have. But I'm not sick and I'm not degrading anyone. My condition makes me no worse than anyone else and the simple matter of my existence changes nothing for anyone either.

So hi, I'm April and I have Body Identity Integrity Disorder (which I will from now on refer to as BIID for the sake of less typing). For those of you who don't already know what this is, let me explain from the point of view of my own experiences.

BIID is a potentially debilitating condition caused by a difference between the perceived and actual self, that is the brain tells you your body looks like one thing but in reality it looks like another. In some people their perceived self has two eyes, two arms and one leg but their body really has two eyes, two arms and two legs. The difference causes a lot of anxiety and related problems for the person concerned, because the brain can't reconcile the difference.

For me, BIID manifests in a problem with my optic nerves. My perceived self has highly damaged optic nerves, which would make me blind. However, my actual situation is one whereby I can see rather well, aside from headaches and eyestrain; which are ironically caused by pressure-damaged optic nerves due to inflamed sinuses. I am therefore confronted every second of the day with an unreconcilable incongruity between what my brain tells me I should be like and what my body is actually like.

The majority of people I know cannot fathom what my problem is and I'm sure there are many blind people who would be similarly confused. I have been asked "why would you want to be blind?", "shouldn't you be happy that you're not blind?" and questions like that. In actual fact yes, I should be happy that I'm not blind, I'm physically able to do a lot of things that blind people cannot do and that's great, really it is.

I should be extatic, as should every sighted person, that I can see all the wonders the Earth has to offer but the sad fact is that I can't enjoy those things because my brain is constantly telling me that the signals it is receiving from my eyes are wrong. At best I should see a murky, clouded blur of colours, maybe even nothing at all, and I cannot escape this.

Similarly, I do not 'want to be blind' in so many words. It's not a case of want, it goes beyond that. In order to resolve the self-conflict to which I am subjected I have to be able to change one of two things. Either I can change my mind to make it accept my actual existence as 'right' or I can change my body to match my self perception. I cannot change my mind though, the technology does not exist and is unlikely to exist at any point in my lifetime. I am therefore left with one option: to end the ever-present, gut-wrenching sickness caused by this condition, I need to become blind.

But people tell me this is sick, that I would be harming myself and that I am making fun of the problems blind people face. None of this is true. I am not sick, I am simply trying to make the best of my situation. I have a problem that has only one viable solution. What would you do in my place?

Yes there is an element of harm in this but the minor amount of physical harm required is tiny compared to the amount of mental damage this condition is causing and will continue to cause for the rest of my life if I do not do something to change it. For those who say I am harming myself if I do what I need to do I ask you this: does it harm you if I do this? No, it does not. However, it harms me more if I don't do it, so leave me to make my own choices about what I do with my body.

Then there are those who say I'm making a mockery of blind people, somehow undermining them by apparently 'wanting' to be blind (and I'll remind you about the above, where I explained that it's not a case of 'wanting' anything). There is no nice answer to this, the whole statement reeks of prejudice. The idea of wanting something being demeaning to those who have it suggests having it somehow lessens a person. Do you think anyone with a disability is a lesser human? I don't. So take a good look at yourself before you start making remarks like that to me.

So there you have it. I have BIID and I have a plan that would eliminate my problem. It's a very simple plan and it stems from the advice parents give to their children when they're young: don't look at the Sun or you'll go blind. It's true, the Sun can damage the retina. All I need to do is either look at the Sun for long enough (or even better, look at it through binoculars so I don't need to endure the pain for quite as long) and I'll eliminate the conflict between my percieved and actual self. It could all be over with in just a couple of minutes and I'd be able to get on with my life without this millstone weighing me down.

So why don't I do it?

Unfortunately my girlfriend is one of those people who doesn't understand my condition. I've tried to discuss it with her but I'm always met with a lack of understanding and endless pleas of "don't hurt yourself". I get the feeling that if I went through with my plan, she would never accept it and I'd loose her.

I don't want to loose her so I don't do what I need to if I'm ever going to be rid of this problem but, as the subtitle of this journal says, it's sometimes so hard not to look at the Sun.

This is a test to make sure everything is working before I begin posting.