tag:blogger.com,1999:blog-290652332024-03-07T20:09:45.983+00:00No JokeSometimes it's hard not to look at the Sun.Aprilhttp://www.blogger.com/profile/01891867108863249967noreply@blogger.comBlogger17125tag:blogger.com,1999:blog-29065233.post-51279989404141733192011-06-16T14:46:00.002+01:002011-06-16T14:51:09.771+01:00Contact lensesI have mentioned in the past that I use contact lenses to oscure my vision in order to help relieve the symptoms of BIID. Some people have been asking where I get these from and how much they cost, so I thought I would write a quick post about it.<div><br /></div><div>I use a variety of sources for my contact lenses, depending on who is cheaper at the time. "No Vision" lenses, as they are routinely advertised, come in a variety of styles and price points but all are more expensive than standard contacts, so if you go down this route you'll have to be prepared to fork out a bit of cash.</div><div><br /></div><div>The ones I have been most impressed with lately are "<a href="http://www.lensway.co.uk/special-effects-lenses/blind/prod97244.html">Blind Halloween Contacts</a>" by LensWay, a UK-based seller of contact lenses for theatre and photography. They don't look 100% realistic but they are about a third of the price of most other places and they work.</div><div><br /></div><div>I would write a little bit here about how you've got to be careful when using contact lenses to not leave them in for too long (like overnight or forever) because they can end up damaging the eyes and leading to blindness but at the end of the day, for anyone in our position, that isn't going to be a concern.</div><div><br /></div><div>Have fun!</div><div class="blogger-post-footer">--
Syndicated from aprilfirst.blogspot.com</div>Aprilhttp://www.blogger.com/profile/01891867108863249967noreply@blogger.com2tag:blogger.com,1999:blog-29065233.post-70996589372872858702011-06-14T10:37:00.002+01:002011-06-14T10:44:07.890+01:00Late responsesI just replied to an email received almost a year ago to the day. Why is this? Because I lost the password for <a href="mailto:holly.a.first@gmail.com">my email address</a>. Suffice to say I will not have been popular with the people who contacted me and never got a response.<div><br /></div><div>In the last year, a lot has changed. I am not nearly as ill as I used to be, although I do still have many muscular-skeletal problems. My BIID is still a problem, but I am learning to cope with it and work keeps me so busy I don't get time to worry about it as much.</div><div><br /></div><div>I have taken to blindsimming in virtual reality and in roleplaying games however, which is how I am learning to deal with my condition. It would be nice if I could get the time to be me in the real world too but unfortunately that is not always possible. My partner is still not supportive of my condition, mostly because she simply cannot understand it.</div><div><br /></div><div>What is confusing me the most is that the severity of the condition is cyclical. I find it is stronger some days than others. Do other sufferers feel this way? I don't want to be alone in this, it is too confusing.</div><div class="blogger-post-footer">--
Syndicated from aprilfirst.blogspot.com</div>Aprilhttp://www.blogger.com/profile/01891867108863249967noreply@blogger.com1tag:blogger.com,1999:blog-29065233.post-10070704082716614072011-03-24T12:38:00.002+00:002011-03-24T12:45:41.685+00:00Keeping busySo it has been almost a year since I wrote anything on here. I don't like to put a lot of personal information on here because I don't want crazy weirdos tracking me down in real life. I'm sure you can all understand that,? I hope so anyway. Nevertheless, I have moved across the country for work and it is going very nicely.<div><br /></div><div>The area I am in now has a higher proportion of people with disabilities, which I suppose is due to the higher number of people in general. WhereI am from originally is quite sparsely populated in comparison with the denser urban centres of the country so it's nice to have more people around.</div><div><br /></div><div>It also means that where I am now has better facilities for disabled people, like crossing meters that actually bleep, and pavements that are not made of medieval era stonework. This is good. It makes things easier when I can't ignore my condition any more and need to - oh, what's the word? I want to say 'act out' or 'live in role' but neither seem appropriate.</div><div><br /></div><div>Not that I am having to do that as much as I used to, however. I think for the most part I've got the condition under control. I work hard, I keep myself involved with other projects and I generally just get by. It's not a perfect solution but until one comes along, maybe it's the best I can get ou of this?</div><div><br /></div><div>I'll keep you posted if that changes, of course.</div><div class="blogger-post-footer">--
Syndicated from aprilfirst.blogspot.com</div>Aprilhttp://www.blogger.com/profile/01891867108863249967noreply@blogger.com0tag:blogger.com,1999:blog-29065233.post-61912698125258289682010-05-28T00:46:00.002+01:002010-05-28T00:59:30.508+01:00And we're backIt has been quite a while since I wrote anything here. The main reason for this has been tat I have ried with moderate success to try to push BIID out of my mind and just get on with my life. As I went on with this, it did get easier for a while to focus on other tasks and generally not have to deal with the issues that were gnawing at my mind.<br /><br />Of course nothing lasts forever and denial is something that burns away quickly until all you're left with is a big pile of realization that you've been deceiving yourself. I realize that metaphor kind of gor away from me but it's about as close as I can get right now to saying what I mean.<br /><br />The fact of the matter is that I hvave a condition that I don't fully understand - hell, I doubt anyone really understands it. It's something that doesn't go away if you ry to hide from it. It lurks in the back of your mind and waits until you're alone, then it pounces.<br /><br />So here I am, back at square one and not sure what to do with myself. I'm annoyed at my own failings and unsure where to go from here, so I've turned back to the old Internet to look for help. It's likely I'll have to start blogging about what I come up against here, because sometimes that really does help.<br /><br />Oh, and if you notice any spelling mistakes or other issues with what I've type here it's because I'm not usde to touch typing and I'm having issues with the narrator software on this computer. It's been a long time since I used it and I'm a little rusty. Bear with me, please.<div class="blogger-post-footer">--
Syndicated from aprilfirst.blogspot.com</div>Aprilhttp://www.blogger.com/profile/01891867108863249967noreply@blogger.com1tag:blogger.com,1999:blog-29065233.post-2385749875946481882007-12-19T23:36:00.000+00:002007-12-24T02:07:24.275+00:00A discussion of views on BIIDWhile 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.<br /><br />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.<br /><br />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:<br /><blockquote><i>"These are people who have a strong desire to have a particular disability and feel depressed and incomplete without it."</i></blockquote><br />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 <i>continual</i> 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.<br /><br />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.<br /><br />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.<br /><br />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:<br /><blockquote><i>"I have yet to find a BIID who knows anything about neurological or other conditions involving mobility."</i></blockquote><br />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.<br /><br /><center><b>Beginning description of medical state</b></center><br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br /><center><b>Here ends description of medical state</b></center><br /><br />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?<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />That's all I have to say for now. Thanks for listening.<div class="blogger-post-footer">--
Syndicated from aprilfirst.blogspot.com</div>Aprilhttp://www.blogger.com/profile/01891867108863249967noreply@blogger.com4tag:blogger.com,1999:blog-29065233.post-34780027951536937622007-12-19T21:20:00.000+00:002007-12-19T21:31:23.188+00:00A painful reminder of BIIDIt 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.<br /><br />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.<br /><br />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.<br /><br />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!)<br /><br />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.<div class="blogger-post-footer">--
Syndicated from aprilfirst.blogspot.com</div>Aprilhttp://www.blogger.com/profile/01891867108863249967noreply@blogger.com0tag:blogger.com,1999:blog-29065233.post-63545638888711612102007-07-29T19:52:00.000+01:002007-07-29T19:58:30.268+01:00Problems with my significant otherAs 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.<br /><br />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.<br /><br />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.<div class="blogger-post-footer">--
Syndicated from aprilfirst.blogspot.com</div>Aprilhttp://www.blogger.com/profile/01891867108863249967noreply@blogger.com3tag:blogger.com,1999:blog-29065233.post-53044677536104426862007-07-02T12:59:00.000+01:002007-07-02T13:12:04.994+01:00Real Life TestsOne 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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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 <i>not</i> providing treatment becomes unethical?<div class="blogger-post-footer">--
Syndicated from aprilfirst.blogspot.com</div>Aprilhttp://www.blogger.com/profile/01891867108863249967noreply@blogger.com6tag:blogger.com,1999:blog-29065233.post-54002417509145861412007-06-30T20:22:00.000+01:002007-06-30T20:37:02.647+01:00Have cane, will travelGetting 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.<br /><br />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.<br /><br />I have found <i>one</i> 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, <i>runs through the middle of the city</i>. This town is a death trap for blind people.<br /><br />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.<br /><br />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.<br /><br />I'm sure there's a workaround for this but I've yet to work it out.<div class="blogger-post-footer">--
Syndicated from aprilfirst.blogspot.com</div>Aprilhttp://www.blogger.com/profile/01891867108863249967noreply@blogger.com2tag:blogger.com,1999:blog-29065233.post-10015531548067332122007-06-24T23:13:00.000+01:002007-06-24T23:17:38.983+01:00Don't worry, I'm not deadIt'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.<br /><br />Anyway, I'm back now I have free time again so rest assured I will write something when I have something to write.<div class="blogger-post-footer">--
Syndicated from aprilfirst.blogspot.com</div>Aprilhttp://www.blogger.com/profile/01891867108863249967noreply@blogger.com0tag:blogger.com,1999:blog-29065233.post-1175538780337712632007-04-02T19:04:00.000+01:002007-04-02T20:26:44.176+01:00Comparisons with other conditionsI received an interesting and thought-provoking <a href="http://aprilfirst.blogspot.com/2007/04/getting-to-grips-with-screenreaders.html">comment</a> 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:<br /><br /><blockquote><i>"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?"</i></blockquote><br /><br />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.<br /><br />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.<br /><br />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.<br /><br /><a href="http://en.wikipedia.org/wiki/Munchausen_syndrome">Munchausen Syndrome</a>, 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.<br /><br />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.<br /><br />So, in conclusion I'd say any connection with Munchausen Syndrome is a false one and could potentially be offensive, too.<div class="blogger-post-footer">--
Syndicated from aprilfirst.blogspot.com</div>Aprilhttp://www.blogger.com/profile/01891867108863249967noreply@blogger.com16tag:blogger.com,1999:blog-29065233.post-1175441065840361402007-04-01T16:10:00.000+01:002007-04-01T16:24:25.853+01:00Getting to grips with screenreadersAs readers who have been following my progress for the last few days will already know, I am now learning to use the <i>Orca</i> screen reader. This is turning out to be a fantastic tool that's much nicer, in my opinion, than <i>JAWS</i> 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.<br /><br />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.<br /><br />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).<br /><br />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!<br /><br />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! :)<div class="blogger-post-footer">--
Syndicated from aprilfirst.blogspot.com</div>Aprilhttp://www.blogger.com/profile/01891867108863249967noreply@blogger.com3tag:blogger.com,1999:blog-29065233.post-1175358560430416632007-03-31T18:21:00.000+01:002007-03-31T18:29:20.440+01:00Further adventures with screen readersWell, 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.<br /><br />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!<br /><br />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.<br /><br />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!<div class="blogger-post-footer">--
Syndicated from aprilfirst.blogspot.com</div>Aprilhttp://www.blogger.com/profile/01891867108863249967noreply@blogger.com5tag:blogger.com,1999:blog-29065233.post-1175349428042976752007-03-31T15:36:00.000+01:002007-03-31T15:57:33.346+01:00Screen readersOne 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.<br /><br />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.<br /><br /><br />On Windows I looked at <i>JAWS</i>, 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.<br /><br />Once installed, the voice of the software changed to something that sounded more like the awful synthetic drawl of Microsoft's <i>Narrator</i> (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.<br /><br />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!<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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)<div class="blogger-post-footer">--
Syndicated from aprilfirst.blogspot.com</div>Aprilhttp://www.blogger.com/profile/01891867108863249967noreply@blogger.com6tag:blogger.com,1999:blog-29065233.post-1175173957712244042007-03-29T14:58:00.000+01:002007-03-29T15:12:37.726+01:00A temporary reprieveWhile 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.<br /><br />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.<br /><br />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.<br /><br />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).<br /><br />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.<br /><br />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 <i>Daredevil</i> 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.<br /><br />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!<div class="blogger-post-footer">--
Syndicated from aprilfirst.blogspot.com</div>Aprilhttp://www.blogger.com/profile/01891867108863249967noreply@blogger.com3tag:blogger.com,1999:blog-29065233.post-1175106759148760142007-03-28T19:54:00.000+01:002007-03-28T20:33:36.343+01:00IntroductionsI'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.<br /><br />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 <span style="font-style: italic;">sick</span>, 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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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 <span style="font-style: italic;">not</span> 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.<br /><br />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.<br /><br />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 <span style="font-style: italic;">need</span> to become blind.<br /><br />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?<br /><br />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 <span style="font-style: italic;">more</span> if I don't do it, so leave me to make my own choices about what I do with my body.<br /><br />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 <span style="font-style: italic;">lessens</span> 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.<br /><br />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.<br /><br />So why don't I do it?<br /><br />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.<br /><br />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.<div class="blogger-post-footer">--
Syndicated from aprilfirst.blogspot.com</div>Aprilhttp://www.blogger.com/profile/01891867108863249967noreply@blogger.com16tag:blogger.com,1999:blog-29065233.post-1149107035495150752006-05-31T21:23:00.000+01:002006-05-31T21:23:55.503+01:00This is a test to make sure everything is working before I begin posting.<div class="blogger-post-footer">--
Syndicated from aprilfirst.blogspot.com</div>Aprilhttp://www.blogger.com/profile/01891867108863249967noreply@blogger.com0