Style Credit

Wednesday, December 10th, 2014 09:48 pm
I've volunteered to write something on bisexuality and disability, for a big project in which I would be one tiny cog (just how I like it!).

It's taken a lot longer than I'd hoped, but my problem isn't writer's block or that I don't know what I want to say, or anything -- as soon as I saw the possibility, I knew the basic shape of what I wanted to say, and even had the kind of punny title in mind that bisexuals seem to find endearing/mandatory.

No, my problem has been that I've realized that pretty much everything I think or write is, it turns out, about bisexuality or (my) disability. These things inform all my thinking. It's hard to pare my brain down to anything like an acceptable word limit!

But it's fun to try. I am getting there.
Friday, June 13th, 2014 03:30 pm
Nystagmus looks much freakier on House than...

Well, I was going to say "than it does on me," but I don't see it on me (if I look in a mirror, my eyes look steady). And I don't know anyone other than me who has it, so for all I know it always looks freaky.

In which case, my friends are even cooler than I thought for putting up with me! And I already know they're pretty cool.
Thursday, June 12th, 2014 09:35 pm
The second episode of Almost Human is audio-described ("the joys of torrenting!"). But actually, this is really awesome! So many things are happening! I had no idea!

(Andrew says audio description has the same prose style as Dan Brown. I haven't read Dan Brown, but I'm kinda worried at how many adjectives there are.)

Though it's a shame that the opening scene of the provocative women in her underwear doesn't include "boobs" anywhere in the description. Blind people can be perverts too!
Tuesday, March 11th, 2014 12:41 pm
The number of Thoughts I have on touchscreens, and what exactly makes them so inaccessible and exhausting and frustrating for me, has increased exponentially in the last 24 hours.

Which is another way of saying I finally got a new phone.
Saturday, November 9th, 2013 09:24 pm
Whip It is a fun movie but it makes me sad cos I think I'm otherwise perfect for it but I'm pretty sure I'm too blind for roller derby.
Tuesday, September 24th, 2013 05:36 pm
I'm really glad I had my eyes tested only a month or two ago. Otherwise I might really worry that they seem to have deteriorated noticeably lately. My peripheral vision (by which I mean the handful of mostly-subconscious tricks I use to mimic the benefits of peripheral vision), atrocious enough to begin with, is so much worse lately that I've been bumping into people I'm walking next to so often that it becomes tedious. My eyes are sore more often than not, and tire easily. (This is another reason I've been burning through the Sherlock Holmes radio stuff recently, and doing my reading on the ereader, where I can change the font to suit me better.)

I'm not really worried, partly because I've so recently been to the optician's, and partly because I'm still only just sure that I've finally gotten over the particularly bad sinus infection I feel like I've had for ages: sinus infections always leave my eyes sore and not working well.

Knowing the explanations doesn't help much when I'm standing here waiting for a bus after missing the previous one I could have gotten -- partly due to the self-centered crowds of fresher's week, but partly due to being much less confident about the number on the bus than I expected to be. It's a bit depressing, and very frustrating.
Tuesday, August 6th, 2013 01:34 pm
Man, it's exhausting being this anxious for so long. Yesterday and this morning I spent all my time trying not to burst into tears, throw up, or start punching things. I contemplated for a while just how minute the imbalance of neurochemistry's bound to be that was causing this inexplicable misery. Add a few drops of something-or-other, or take a few away, and I'd be bouncy and in love with the world.

It comes to something when I actually feel better on a morning where I've been to the optician's -- something so, well I guess I have to use the word triggery, for me that I avoided it for years and relevant imagery featured in the worst nightmare I've had recently (of which there have been many, thanks to the above-mentioned brain chemistry).

It was tolerable because ordinary opticians are never as bad as what freaked me out (though their instruments are the same...), the one I see is wonderfully laid-back, and most of all because lovely [livejournal.com profile] greyeyedeve went with me. She's a great companion for these sorts of things, understanding the trauma, but lively and chatty and making what would otherwise be a chore into actual fun.

I took her along last time as well, and she picked the frames I ended up with now, which I don't think are ones I'd have chosen but then [livejournal.com profile] greyeyedeve not only has an excellent sense of style but because she could actually see while she was looking at them, unlike me. Foolishly, I am sad that I needed new glasses today not because of the cost or the indication that my eyes deteriorate, but just because I like the frames I have now so much that I will miss them. But I trust I'll like the new ones just as I slowly became so fond of these.

We went out for lunch, trying out the new Inspire cafe, and by the time we'd finished I think we were both ready for a nap, her because she wants to go out tonight and me because it's so exhausting being anxious all the time. So now, with nothing else I have to do today, I'm curled up listening to "The Spectre of Lanyon Moor," one of my very favorite Doctor Who stories because it's the only one to have my two favorite companions.
Tuesday, May 7th, 2013 01:30 pm
You know what my favorite thing is? It's when people shout at me when I've given them the wrong money for something I'm trying to pay for.

Only they don't even shout "That's not enough money," they just shout whatever the amount of money is that they've previously told me in a polite voice and which I've tried to give them. I just find it so phenomenally unhelpful. I don't know why people do it: do they think I'm deaf and didn't hear them properly (not that shouting is a good response then anyway! but people do it). Do they think I don't really have enough money? Do they think I'm just trying to waste their time? I don't get it. And they've clearly counted up my change and found it wanting, so why don't they tell me what they know? If they've realized I'm 10p short, what's the harm in telling me, rather than just repeating themselves?

It's on my mind because it happened to me today in the post office, but it happens to me regularly in shops and on buses and in pubs. Today I felt especially stupid because what I had carefully assembled to be the exact change I needed ended up having the fatal flaw of mistaking a 20p piece for a pound coin. I had to sweep up all the change and give the guy a fiver instead; he all but threw my change at me after that.

Especially if I'm busy, distracted or flustered, some combination of my eyes and my brain can completely fail to see that I've mistaken a coin for another coin, or that I've given them only four pound coins when I needed five, or whatever.

So saying "You're missing a pound here" or "you're 20p short" or whatever would be super-helpful to me. Shame, then, that nobody does that. Almost everybody just repeats the price, in a hostile way, and glares at me while I frantically examine the palmful of coins they're thrusting out to show me the evidence of my sin. That's exactly what the post office guy did today.

There were a lot of coins for me to examine before I realized my mortifying mistake. I felt like I'd been pushed off a cliff: all the time spent examining coins I was in freefall, and my only parachute was discovering I'd made a stupid mistake. Which is not knowledge that cushions my fall very much.
Monday, March 18th, 2013 10:30 pm
"Why do these things always happen when I'm with you?" [livejournal.com profile] diffrentcolours asked, leaning over the steering wheel in hopes that those few inches would provide crucial to seeing better through the pea-soup fog near Kendal, after we abandoned the M6 and its stationary traffic.

The trip got better from there. We spent the weekend in Dundee, at Scottish Liberal Democrat conference, exhibiting for LGBT+ Lib Dems, seeing friends, drinking whisky and beer and free wine, winning a giant stuffed dog by guessing his birthday (I suggested my own birthday of course), watching Wales win marvelously in the rugby (or napping and watching me watch the rugby), knowing that most of the world's cheeses sink rather than float (I was so relieved to be right about that; D's faith in me as someone who really likes both science and cheese was on the line!), and seeing (cement statues of) PENGUINS!

I'll come back to the penguins, but first I wanted to say something about one of the fringes. It was put on by RNIB Scotland, and it was about supporting people through losing their sight. It seemed generally relevant to my interests (and free lunch!) but I wasn't expecting to be hit as hard as I was.

There was an academic (with sight-loss herself) talking about her experience of counseling a woman who went blind late in life. An important step was the woman, who'd been so upset about losing her independence, realizing that there was an element of dependence in her life. She was much happier, no longer clinically depressed, living a fuller life...but of course she was also more dependent on her carers and other people and assistive-technology things.

This was just a passing reference in the presentation, but it was pretty much where my brain got stuck.

I kept thinking about a childhood where I tried so hard to be normal, to fit in, to do everything expected, to be like the other kids, to be independent. It must have worked; not being able to drive was a huge blow for me, not only because it meant I could hardly have a private life outside my own head -- I couldn't buy anything, go anywhere, see anyone or do anything without my parents knowing -- but because it was a sign that I'd "failed" in being independent and being like everyone else.

But now looking back, it was also the first time that I got to legitimately step away from responsibility I couldn't fulfil. And as much as I hated not driving, I loved being able to say "this is not for me, I can't do it, and that's okay." It was such a relief!

Everything else -- reading off the blackboard, catching or hitting things in gym class -- I was just about able to do, although such things were a lot more work for me than they must have been for other kids and I was usually terrible at them. But I didn't think they were so much work at the time, because I had nothing to compare my experience to, no concept of better eyesight or better support.

It wasn't just more difficult for me to get by, it was hugely more stressful, but I didn't think of it that way either. All the focus was put on independence, and I was a pretty independent girl by nature, so I never questioned any of that. It helped that I was smart in ways that made me good at school, mostly having a good memory for what I'd read (I've always used this to get around having to read signs and stuff, and I basically had to memorize sheet music in order to play the piano, which I did on a regular basis), because being clever masked some of the difficulty I was having and the stress it caused me.

Even I didn't realize how anxious stuff like strange places or new situations could make me, until quite recently. A combination of finally going to the doctor about what turned out to be incredibly bad anxiety, and thinking and talking a lot about disability with clueful disabled friends meant I started to realize how the anxiety dovetailed with the visual impairment and the struggle not to seem visually impaired.

I find it really hard to ask for help, but it does help keep the anxiety down and I've done far more mortifying things to tame that beast. Now I try to say I'm partially sighted (I really like the British term; in America I'm "legally blind" and I don't think people have as good an idea of what that means; I didn't for ages myself even though I knew I must be that because my mom told so many people I was...I guess both countries use "visually impaired" to some extent but that rubs me up the wrong way too). I worry people will react badly if, say, I ask what gate my flight is at (I hate airports; some of the least VI-friendly places I've ever been), and I feel better about asking if I start off saying I'm a bit blind.

I don't like to do that, in a way, but I don't know why I don't like it; I'm not ashamed and I'm not otherwise reticent when it comes to talking about myself. Maybe I don't want to be perceived as making a fuss...but I think some of it's that old "you must be independent, you can be like other people if you try hard enough, so asking for help is like giving in, it's like failure."

You don't have to tell me this is stupid; I know I deserve help when I need it. It's just old habits, so incredibly old as to totally unexamined.

Until, in a flash, most of these thoughts and feelings zoomed through my head when I sat there with my paper plate and my glass of free wine as this academic was moving from the aside about blind people's balance of dependence and independence to whatever point she was actually trying to make. I wasn't able to pay much attention.

At the end I went to tell her how much that bit had meant to me, and she was gracious and clearly pleased to have made an impact. I got talking with her and an RNIB Scotland man who talked about having gotten such a shitty bedside manner along with his RP diagnosis twenty-five years ago, who after listening to me waffle on for a while mentioned symbol canes.

Which I hadn't even heard of (I lost all my "blind culture" when I stopped having enforced contact with caseworkers and their other blind kids when I was in high school) but from the name and context I could guess well enough to continue the conversation. The most useful thing I found with a little googling around tonight was this old Ouch message board, which confirmed my guess.

I'm simultaneously thrilled that such a thing exists, intrigued to try it (imagine not having to be so nervous in strange new places!), and reining myself in by saying I'd feel ridiculous and I'm not that blind and how would that even work anyway and I'd be awkward and stupid and nobody would get it and I'd be more nervous!

But then even the Ouch! poster says, "I know this is going to sound ridiculous but because I don’t really ‘look’ VI I am concerned that some people might think that I shouldn’t be using the symbol cane or be confused as to why I am using it. I don’t want any hassle from anyone as I'm a pretty none confrontational person." So get over yourself, Holly. You're nothing new.

I'm not going to run out and buy one anyway, but it's nice to know they're there. I think it's a lovely idea; white canes are brilliant and it's like a little tribute to how useful and respected they are that people can make use of the recognition even when they don't need the feedback that most people think of as the point of the cane.

Anyway, that's enough waffling. I'll have to come back to the penguins another time; they and their story deserve their own entry anyway.
Friday, September 7th, 2012 10:19 am
Last year, I saw a documentary called (I've just looked it up) The Man Who Forgot How to Read. I watched it mostly because I like Oliver Sacks, and only about halfway through it did I realize it might be of personal relevance to me. (Sometimes I forget that my eyes and my vision are not normal.) But now I can hardly tell you anything about the program besides the bit that made me realize that.

I can tell you about a woman, standing outside, looking at a tree, swaying gently back and forth, with a beatific smile on her face. Only saints and mystics and the people who get the really good drugs smile like that. But she was none of those, and her life-altering experience was just something that ninety or ninety-five percent of people have and think nothing of.

She was seeing in stereo.

I didn't remember many details of her story, just that she'd never had stereoscopic vision but hadn't thought much of that until, in her forties perhaps, she started having other problems with her vision. She went to a specialist and got treatment that, suddenly, left her able to see in "3D," rather than as if everything were on the same flat plane. She'd be literally stopped in her tracks by something like the tree (moving back and forth made it clear and appreciable that the leaves and branches were taking up three-dimensional space) or the steering wheel of her car "popping out" from the background. She could see the "space" between different layers or levels of things, when they'd previously looked as flat as a painting or photograph.

And what really broke my heart, what made me remember this and the book Sacks had written on similar subjects, was how goddam happy she was about all this. How blissful the experience of stereoscopic vision had made her.

And then, conversely, how badly its loss had affected Oliver Sacks himself. Treatment for a tumor near his retina has left him with little sight in one eye, and thus left him in a monocular, flat world. While the disturbance of visual effects that first alerted him that something was wrong, the surgeries, the fear of cancer and so on would be awful for anyone, the loss of his stereo vision seemed to hit him particularly hard. He'd always loved this ability, was obsessed with stereo photography since he was a kid, was even part of a stereoscopic society that believed they literally saw the world more deeply.

The other thing that I remember well from the documentary was him speaking movingly of looking through a ViewMaster as a kid, of the Grand Canyon and other picturesque places, feeling as though he'd been there, though he'd never visited except with stereo photography, and how much he missed that. Looking at a supposedly-3D picture of a lake surrounded by cat-tails or something, with a mountain in the distance, he said he knew the plants and the lake were meant to look close while the mountain was very far away, but he couldn't see that any more. He just knew it from past experiences of pictures like that. I remember him getting a little teary-eyed, but even if that's just my memory playing tricks on me (for one thing, my own vision is rarely good enough to pick up on invisible tears showing up on a person's face, if there are no other clues (i.e. the person is trying to hold themselves together)), it was clear he cherished the vision now lost to him.

And it was something I'd never had, so never even thought to miss (except in a few instances; more on this later). Watching these people, though, I really wondered what I was missing, and was a little sad I'd never know. Oh I could have it explained to me, like you can explain color to a colorblind person, but it's clear the explanations are not much like the experience in either case.

The story of the woman gaining stereo vision made me crazily hopeful for a second, but I pretty quickly knew that what happened for her wasn't going to happen to me. I didn't have the access to the advanced visual therapy she had, and even if I did, it hadn't been expected to give her this ability; it's not supposed to e something you can acquire like that.

Plus my problems are otherwise very different to hers. Since the hellish visits to eye specialists stopped long before I was old enough to be treated like a person (I was a teenager) I don't know much about my own eye conditions...and since I ended up with something like PTSD about eye doctors, however strong my curiosity is, I'm not going to do anything about it! So I don't know but have always assumed my monocular vision was due to the huge disparity in acuity between my two eyes. People have a dominant eye like they have a dominant hand, but in my case one eye's twice as bad as the other. (There's another incredibly obvious reason I won't have stereo vision that I've just learned, but I'll get to that.)

So my brain defaults to seeing out of my right eye. Only if I cover it up or close it do I see much out of my left, and it's no fun -- I can't read the words I'm typing at the size or distance from the screen that I'm otherwise using now, and I get spiky pains around that part of my head if I do it for more than a second or two. Whereas if I close my left eye, there's very little change in my visual field or acuity. Because that's what my brain is doing anyway.

I had a ViewMaster as a kid, too. How singularly pointless! I can only assume my parents didn't realize the fatal flaw there -- though that'd be unusual for them, overprotective and misinformed as they were.* And of course I wasn't going to tell them the ViewMaster didn't work for me: as is so often the case, I thought my experience was just normal. This was a machine for looking at pictures of Mount Rushmore, kinda boring but then a lot of toys were. I knew, of course, that it had holes for two eyes to look in, but I was young enough not to really understand that I was only seeing through one eye, or this would interfere with enjoyment of the toy.

With all the other problems my eyes have -- acuity (I am, roughly, very shortsighted), field (I have very little peripheral vision), poorly formed eye muscles (which mean my eyes tire easily and causes what Plok calls my "strange saccadic eye-movements", the jumping back and forth) -- that do have obvious, constant and annoying impacts on my life, it had never really occurred to me to think too much about stereoscopic vision. But the documentary made me have to curl up on the sofa under a blanket for a while, wanting cuddles. And it also really made me want the book that Oliver Sacks had written on vision, which was mentioned in the program.

I've finally got my hands on it, and it's given me a lot more to think about on these subjects. But since I've written a lot already, I'll stop here for now.

* I remember my mom telling someone there was no point taking me to the movies, "because she can only see a little bit of the screen," my mom said, making a circle of her thumbs and forefingers to demonstrate. I don't remember arguing or challenging her on this -- I was very young (and it probably wouldn't have done any good if I had; I was ignored or treated as if it was just wishful thinking or lies when I tried to correct my parents or caseworkers or offer an opinion on what adaptations I needed or whatever). I do remember being surprised though; I am more than capable of seeing a whole cinema screen thankyouverymuch, and if I'd taken my mom at face value I'd have believed everyone else saw movies the size of skyscrapers, if what I was seeing was only "a teeny little bit"!
Friday, July 13th, 2012 12:47 pm
Just when I think the whole ESA thing can't get any more disheartening, rage-inducing or hurtful, it does.

This is where they get people to give up on it. I have been adamant I would persevere, I wouldn't let them get away with ignoring me, lying to me, lying about me, and treating me unfairly. But today I've had so much to do with their skewed version of reality that I just feel crushed under the weight of all the cognitive dissonance. I tell them my secrets and they tick a box. The wrong box.

They say I'm well and they're wrong. I want nothing more than for them to be right, but they're wrong. I'd rather anything than have to disagree with them, but I have to. What they write on their papers has my name on it but it's not about me. How I wish it was. I would rather be that person on the paper than the one whose hands shake while she holds it and whose tears fall on it. But I'm not her, and I hate their lies all the more for having the power to record that I am; their reality is privileged above my own, not because they know me but because they don't.

When I thought I am as fed-up with my life as I've ever been, as pessimistic, as despairing...when I thought I had built myself a shell against the DWP and all its works and all its empty promises...of course I am due a knockdown. I deserve to be reminded that that is nothing but wishful thinking and things can still hurt even when I thought I was numb, and darken my world when I thought it was black.

The DWP have just started another consultation on the Word Capability Assessment. Lets fucking tell them.

(Oh yeah, and this is why I deleted my Twitter account, for anyone who cares. I may want to delete whole chunks of my life but since I can't, at least I can get rid of fucking Twitter.)
Thursday, May 3rd, 2012 01:11 pm
I think it's interesting that one of the recipients of a retinal implant to restore vision is quoted as saying "I have even dreamt in very vivid colour for the first time in 25 years so a part of my brain which had gone to sleep has woken up!"

The implants are designed for people with a degenerative condition (although the RNIB says complete blindness is uncommon), but nothing is said about whether this person was blind at the time of getting this implant -- but it doesn't sound ilke e could have had a lot of sight, if being "able to detect light and distinguish the outlines of certain objects" are encouraging results of the operation. The condition seems to be indicated by lack of night vision or peripheral vision; nothing much is said about losing color vision although the disease can affect the cones (which perceive color) as well as the rods (which give us night and low-light vision). It makes sense that a loss of color vision could lead to dreaming in black and white, but I can't assume that's what happened in this person's case. Some people with no sight at all do "see" in their dreams, and just as the brain coughs up old memories when its dreaming, it can use old sensory data even if it's no longer getting new stuff of that sort.

People are strangely fascinated by whether dreams are in color. Google brings up tons of results to people asking whether we dream in color, and the results are contradictory: "Yes." "Sometimes." "Some people do." "Everybody does." Even "Dreams are black-and-white during the period of black-and-white films and TV in the first half of the twentieth century, but before and after that, dreams are in color." My favorite is "even if the media did not change our actual dreams, they were nonetheless a principal cause of our change in opinion about our dreams."

Of course all these opinions presume sightedness. The internet is also full of people asking the question "What do blind people dream about?" It seems ludicrous to me, but then I suppose I don't have quite the vision chauvinism as a fully-sighted person. The answer is, as I suspected, the same things as everyone else -- their daily lives, their memories, and so on. It seems people who had some sight beyond the age of seven do experience visual imagery in dreams.

Of most personal interest to me was that while less than one percent of sighted participants surveyed in two previous studies reported experiencing gustatory, olfactory, or tactual sensations in dreams, all but three of the blind participants in this study reported experiencing them. I was surprised that the number is so low in fully sighted people -- either the study is flawed somehow or visual chauvinism is even stronger than I think! -- because my dreams definitely use those other senses.

It's because of this connection between people's waking and dreaming thoughts and experiences that I was surprises eomeone whose vision was restored to the extent that e could discern light from shadow and the edges of objects (things that are among the easiest to see and thus common among people with low vision) was suddenly dreaming in color (which leads me to assume e was dreaming in black-and-white previously, rather than no visual images at all -- both because I'd have expected em to put it differently otherwise (the comparison would've been "now I can see objects [where before I couldn't]" rather than "now I can see color [where before I couldn't]") and because es degenerative condition probaby gave em sight for long enough to fall into the category that the science tells me would leave a person with visual dreams).

But most of all, on reading this person's reaction to es new sight, was em saying so matter-of-factly, that the direct and obvious and simple cause of es newly-colorful dreams, was "a part of my brain which had gone to sleep has woken up!" I smiled because I recognize this: it was once explained to me (by someone who was supposed to teach me how to cross roads without getting hit by cars, rather than any sort of medical professional; they never talked to me like a person) that perhaps that's what happened to my own brain. Nothing changed in my eyes or optic nerves or visual cortex (as far as medical science (ptooi!) knows anyway) between my being born blind and my suddenly being able to see in a way that was obvious to my parents and the specialists) so it's like my brain woke up and realized it could make sense of these (no doubt extremely low-bandwidth) signals it was getting.

The metaphor of waking up is a hopeful one, much better than the usual ones about non-fuctional parts of the brain being "dead." It's nice to think that all the shoddy parts of my brain (even though I know better) are still there, perfectly fine, just slumbering and waiting to wake up and spring into action, like King Arthur or something.
Wednesday, April 18th, 2012 10:23 pm
I finally got through to the useless phone number on the letter I got the other day saying I'm not entitled to any more disability benefits.

If you are awarded this benefit you are put into one of two groups: "work-related activity" or "support." Support is for really ill/disabled people who aren't expected to go back to work any time soon and work-related has the intention of getting you back to work.

There are two kinds of this benefit, one based on income -- which you can't get if you have a partner who works more than 24 hours a week, as the government expects that to be enough for two people to live on, which (if my math is right) could be as little as £145.92 a week, and that's not a lot. So I was getting the other kind.

And people getting that kind, who are also in the work-related activity group -- i.e. not really that ill, in the government's eyes -- are the ones affected by the recently-notorious and much-maligned Welfare Reform Bill (which of course now is the Welfare Reform Act, but the #wrb hashtag is still being used on Twitter, which helped promote and organise some of the backlash against some of these proposed "reforms"). The change means people in circumstances like mine can now only get this kind of benefit for a year.

What happens to us after that? The letter didn't say, so this is what I was calling up to ask. The man on the phone said basically if I can rule out getting the income-based version (which I can, because my husband has a job), then "hopefully" the appeal I already have in progress will find that I should be in the support group rather than the work-related one.

That's what the guy said. Hopefully, I'd get even more ill.

He clearly didn't personally wish me to get more ill. He didn't even seem to be thinking much about the implications of what he was saying. But I couldn't think of much else for a little while after that.

The best I can hope for, in this context, is to get more ill.

Fuck this system.
Thursday, April 12th, 2012 12:44 pm
What bothers me most about the letter I got from the DWP today isn't that I have only two more weeks of getting my own income.

It isn't how long and hard I have had to fight to get it. (Which is saying something. Because that bothers me a lot.)

It isn't that I was ignored, neglected, fobbed off and lied to about my own physical and mental disabilities, having them as erased as thoroughly as anything could be.

It isn't how much more ill the process has made me, it isn't the dignity it's taken from me.

It's how fucking arbitrary this is. After a year, you're done. There's no appeal, not even the thinnest pretense of hope that I've learned to glean from these letters (which is mostly based in thinking "You're wrong!" and still being stupid enough to believe that my being right is worth something).

It doesn't matter how ill I am or how hard I worked to convince anybody that I am. It doesn't matter that this affects other people's health too -- starting with my dear husband, who's stressed to the point of illness by his job and has had to keep working because if he doesn't he's convinced we won't have any money, and can anyone blame him for being cynical and pessimistic about the benefits system after seeing what I've gone through?

I don't know what to do. I'm trying to help him get a new job at the moment, and how hollow must my encouragement sound?
Monday, January 23rd, 2012 07:47 pm
(an LJ Idol entry)

She loved the smell of diesel particularly.

Well, that and the power, but she didn't want to tell the police that.

"....massive traffic jams on the M6 due to an overturned lorry between junctions--" she heard before someone reached through the open door of the cab and switched the radio off. She was disappointed; she'd been looking foreard to hearing about herself on the radio.

She kind of hoped the radio would be hearing more from her soon.

The police officers on the scene were already asking her Why did you do this? She imagined Eddie Mair asking her.

It wasn't that bad a crash, really. She hadn't hit any other cars. And her cargo wasn't inflammable, or toxic, or anything dangerous like that. You got lucky, the police officers told her. She nodded. They resented her for not being in hysterics. She was still imagining the Radio 4 interview.
Why did you do this job? How could you do it?"

"Well you see, on all my work capability assessments, the private company that the UK's Department for Work and Pensions farmed out these assessments to, which judges its success by how many people it can get off disability benefits, which disregards the professional opinions of doctors and specialists working with the people in the system, which was found impersonal, mechanical and lacking in clarity....they kept telling me i had no difficulty seeing."

"No difficulty?"

"Those were the exact words in the letter I got after the second 'assessment'. Which by the way happen at irregular intervals, including just after I won an appeal and was, again, told that there was nothing wrong with me."

"Sounds like you made a pretty sudden recovery then!"

"Yeah, quite; seems my poorly-formed optic nerves and abnormal visual cortex and weak eye muscles just sorted themselves right out in the month between when I was awarded benefits and when they were taken away again. I mean, that must be what happened..."

"So, rather than appealing the decision... you got a job as a lorry driver?"

"Well, why not? I mean, until this point I'd obviously not tried to drive. It would've been illegal for me to drive."

"Well yes, it says here you were bilnd at birth and your vision isn't all that correctable even with glasses."

"Exactly. My visual impairment was always such a hindrance for me! Not being able to drive myself out of the farmland I grew up in was the worst. If only I'd known then that I had no difficulty seeing! Here I had teachers getting my textbooks on tape, and my parents refusing to let me play sports because they thought I'd get hurt! But I never guessed that I have no difficulty seeing! Doctors and specialists and expensive consultants at the Mayo Clinic and everything, they thought I had tons of difficulty seeing! They don't know why I can see at all."

"So how were you able to get this job driving these big lorries?"

"I interview well."

"But...this is really serious. If blind people are driv--"

"Partially sighted, Eddie. Says so right here on my Certificate of Visual Impairment. I'm only legally blind!"

"Er, right, sorry... but if people who are driving lorries can't see where they're going..."

"Oh I can see where I'm going! I can see the road and everything. And the other cars, more or less. They tend to get out of the way though if they see me coming. I mean, you wouldn't catch me driving a Mini! That'd be so dangerous! Nobody would care about running into me then!"


"As it is, all I have to worry about is staying on the road. Like in those old arcade games I used to play; I was really bad, I'd drive over whole rows of pixelated palm trees along the side of the road. Remember the cars would just suddenly appear, nearby, because they didn't have the computing power to make them realisitically approach in the distance? Though it pretty much looks like that for me in real life, too. You know! [she laughs] All of a sudden, wham!, there's a car right there up ahead next to you!"


"It's better than the appeal process! Even though it has a really high sucess rate, you know -- seventy, eighty percent -- which just shows you how terrible these assessments are in the first place."

"If it's such a terrible system, why hasn't anyone brought this up before?"

"Well, people have. The Liberal Democrats, at their last Federal Conference, actually passed a motion precisely about these assesments and another on provision of adult social care. Since they're a party of government, I can hope this will make a difference, but I have been made very cynical by my experience with this system. The huge numbers of people who are failed by the disability benefits system more generally have been highlighted recently by the 'Spartacus Report,' an uprising of sick and disabled people organizing themselves through social media, when the government wouldn't listen to them and mainstream media wanted nothing to do with the movement. Why hasn't anyone brought this up before? Because I guess you think that a blind woman driving a big truck down a motorway is the first thing worth paying attention to."

"That's a bit harsh, don't you th--"

"Well, you think this kind of thing happens in isolation? You think I wouldn't love to be told 'there's nothing wrong with me'? I want nothing more than for that to be true. But it isn't, and if I have to live in a system that tells me lies are truth, my very existence point out that absurdity. I can't help it."
And with that, her reverie was broken; the interview vanished as if in a puff of smoke
And then, the girl on the side of the motorway, with police radios crackling and the smell of diesel filling her nostrils, disappeared too. Because she is just a figment of my imagination, a length to which I have not gone...but otherwise I am her and everything she says is as true, as real as you are.
Tuesday, November 22nd, 2011 03:53 pm
(an LJ Idol entry)

My parents are inconceivable.

That's what you call it, right? They couldn't conceive.


No one likes to think of their parents having sex.

People look at you quizzically when the subject comes up and you say "I'm convinced my parents have never had sex."

I think Andrew's convinced too; he says my dad looks like he has heard of sex and might have liked to try it once but he seems okay that he didn't.


It's actually a really invasive thing, adopting kids. And this after all the tests and everything necessary to ascertain that they couldn't conceive a child which led up to them wanting to adopt. Their finances were scrutinized, people came to their house to make sure they had a decent place and room for a baby and all that.

Lots and lots and lots of questions asked.

It only got worse when it was discovered that I was blind. I got a caseworker from State Services for the Blind. I think my mom was offended that they were being checked up on to make sure they weren't neglecting or hurting the blind baby, but unfortunately not everyone finds that as inconceivable as my parents do.

They had to wait a whole year to finalize my adoption (and not nearly so long for my brother's) because it is anticipated that the prospective adoptive parents will want to give back their imperfect child.


Yes, my parents discovered I was blind, after having me at home for days or weeks. I find it inconceivable that no one told them. The adoption agency must have known.

My mom kept all the cards they got congratulating them on the new baby. I looked at these once and thought a lot of them hinted at the hard times that people saw ahead for my parents in raising a disabled child. My parents must have thought about this too, but they've never begrudged me the fights that had to be fought.

(Indeed they could be a little too enthusiastic in those fights, believing the Mayo Clinic was somehow good for me when I thought it nothing but a torture chamber, and for a while my mom was famous for being the one who yelled at and hit the side of a (non-moving, driverless) bus. I was on the bus and she thought the other kids were picking on me. They were, but that was nothing compared to having the crazy mom.)


My mom said a lot of people told my parents to give me back, at first. Friends of theirs, people from church. She's never told me who they are, but I'm sure some of them still say hello to me when I'm back home, still ask my mom how I'm doing.

"Would you give your child back?" my mom says she told them all at the time.

"Well, no," these biological parents replied. "But that's different."

"No," my mom said. "It isn't."


Grandma P has told me a story of talking to my other grandma, M, at some birthday or Christmas or something.

"I have one real grandchild and three adopted grandchildren," Grandma M is supposed to have said to Grandma P. (The "real" one was the youngest, born ten years after me, and I never knew what a disappointment the rest of us had been to her until then.)

"I have nine grandchildren," my Grandma P said.

"Yes but how many of them are really yours?" She knew of course that at least my brother and I couldn't be.

"I have nine grandchildren," Grandma P said.


Lots of things about adoption are strange and mind-boggling. Maybe that's why we use the word inconceivable for strange and mind-boggling things.
Thursday, November 3rd, 2011 11:34 am
"...t's time to start thinking of autism as an advantage in some spheres, not a cross to bear."


It'll be no surprise to many autistic people or those who know and love them that autism is anything other than a tragedy. Finally it's starting to seep through to scientists (and I'm not surprised this one's "group includes several autistcs"; a lot of these myths become difficult to hang on to once you meet the people apparently so afflicted).

This is also notable because only the other day did Andrew share an article from this website for being the first he saw that mentioned adults with autism. They shared a parenthetical phrase, something like "this treatment may also benefit adolescents and adults with autism," and he rejoiced because this was the first sign that autism isn't just a disease of little children and -- much, much more -- their aggrieved parents.

The cute, tragic children are good for the fundraising and grant applications that power academia, and the framing of autism as something awful to be cured is a pernicious one that suckers in a lot of well-meaning people who don't realize it's offensive to many autistic people who see it as an attempt to erase them, strip them of personality and individuality and, yes, strengths.

If there was a magic button I could push to "cure" my blindness, of course I'd push it. Being able to see more and better, to not get sore, tired eyes and headaches as often as I do, would be an unalloyed good thing. But if there was a magic button to "cure" me liking the music I do, or talking a lot, or writing well, or doing any of the things I care about and enjoy, not only would I stay the hell away from that button, I'd wonder why it was called a cure at all.

A lot of the things I like and love about Andrew, things that drew me to him and gave me respect and fondness for him, are traits that coul be ascribed to his being on the autism spectrum. It's ridiculous to think that he could be "cured" of his enthusiasms, his insight to patterns in everything from music to medicine, his prodigious memory, his ability to focus and work hard for as long as is required, or his ability to process a lot of facts very quickly and translate them to a form understandable to nearly anybody...and some things like his overwhelming empathy, which "everybody knows" autistics don't have, but which I've always found people on the spectrum to have a lot, it's just expressed differently.

(I think Andrew applies the same fervor to feeling bad about things I don't remember him doing that he does to, say, the release of five CDs' worth of an unfinished album from forty-some years ago, as evidenced in the first two paragraphs here.)

For all that they are late to the party, it's good to start having scientists on side; they're more likely to be listened to than people who actually have a thing (she says, totally not still bitter over her poor treatment as a scared kid at the Mayo Clinic). And I think the idea that a lot of people are being measured by the wrong standards, and misinterpreted, could be useful in many contexts besides autism.
"We coined a word for that: normocentrism, meaning the preconception you have that if you do or are something, it is normal, and if autistic do or have it, it is abnormal."
It's about time.
Thursday, June 16th, 2011 10:48 am
From a young age I knew my parents had gone to a lot of extra effort to get me, and I was very touched by this. I still am. It was made clear to me that not everyone would have chosen this the way they did, though they didn't see it as a choice. They were told by a lot of the people who knew them -- people who, I am sure, now know and are at least polite to me -- to give me back. To not go through with adopting me, because a blind child would be too much work.

My parents said "Absolutely not. You wouldn't give your child back, would you?" Well that's different, they would say. "No it's not," Mom and Dad said.

At various points in my life my awareness of this has taught me a lot of different things. That I am completely loved, and well looked after.... so much that I still can't really grok the horrendous childhoods people are capable of having.

That your people are your people, no matter how much work they might be or how "imperfect" they are.

And one I only realized when I was thinking about this last night: when I was young, stories taught me that good people get rewarded and bad people get punished. So I figured the reason I could see a little when I got older was as some kind of reward to my parents for sticking with me. Things did get at least a little easier for them when I wasn't totally blind any more.

It sounds silly now, but it made total sense then. That's just how it would happen in the stories: good people would face adversity, learn to deal with it, and then be rewarded by it being taken away after all.

To some extent I think "t'was blnd but now I see" also taught me something that wasn't true: that there's a reason for everything. I don't thnk so now, but it hugely informed my thinking as a child and a teenager. I don't know if it's more probably called an imagining or a belief but I liked to think that I got some sight back because there was something particular I was "meant" to see. I remember looking around my bedroom, reading a book, doing whatever I was doing, and thinking I would one day see something special. I had no idea what. It could be anything, anywhere...

Maybe that's why I think the universe is always this amazing now.
Sunday, May 22nd, 2011 10:07 pm
I was telling a friend of mine how I was feeling a little bit intimidated last night about feeling a little intimidated by the prospect of flying to Minnesota in a couple of days. He asks why. I suppose it's a weird reaction to have to something good. So I explained. "...I've just had a week where I barely got out of the house and it seems such a big jump from that. ...it's so sudden. It's only a week ago we booked the tickets and I'm used to having a much longer run-up to get myself used to the idea. Plus, I've also spent the last few weeks wearing the wrong glasses, the really old ones, that were scratched and gave me headaches and left me unable to see things that I knew I should be able to...hating to do things on my own...airports are just at the edge of what I can cope with at the best of times...not going to familiar well-signposted one...changing planes in America instead which always sucks."

And at that point it just seemed like I was whining, so I stopped.

But he assured me I wasn't, and he said:
The specific nature of your blindness really does put you in a funny position, doesn't it? Not being able to see *well* -- it's a bit of a different thing from not being able to see at *all*, but of course no one bothers to think about it as different, they see it as on a continuum: "better than blind". Well, but that doesn't help you much if people are constantly asking you to read things you can't read. No one asks a totally-blind person to read out what's on the blackboard, do they? No they do not, and so while it's very great and wonderful that you can see -- obviously!! -- your problems aren't just "same but less", they're "less but different".
And there's nothing particularly new or special about what he's saying here. Nothing I (and many others) don't know and say. But sometimes it just feels so damn lovely and nice and comforting to be understood without having to explain; it's a warm hand to hold, and sometimes that helps more than you'd think.
Thursday, May 12th, 2011 04:28 pm
This week I have been mostly screaming," a Twitter chum of mine said on her blog today.
Mainly inside, occasionally out loud, and I hope not very often at other people. (But don’t check that, OK? Just in case.) I didn’t want to tell you that. You very probably didn’t want to hear it. That’s the bloody pain about this bloody illness, I’m not allowed in good conscience to keep suffering in silence. Can you imagine the world if every time someone asked ‘how are you?’ they got an honest reply? Eeek! I’d imagine ‘Yeah, all right, thank you, a bit tired’, is about as much detail as anyone would want or expect. But we with ME are supposed to TELL THE TRUTH because we have to raise awareness! We’d be social outcasts, if we actually ever left the house to have a social life.
Today is ME Awareness Day.

ME means Myalgic Encephalomyelitis, which would mean pain caused by inflammation of the brain or spinal cord, but in practice it means controversy. Some people think Chronic Fatigue Syndrome is another name for the same thing. Some people think a virus might cause it. Some people think it doesn't really exist, including a doctor at the GP's surgery of a friend of mine, who was so unhelpful to her he contributed to her having to be hospitalized recently.

The nature of ME means that a lot of the people who live with it will find it difficult or impossible to say much to raise awareness on this, its supposed awareness day. For this reason, and becasue of what I was saying earlier about the importance of caring about stuff beyond what immediately affects you, and because it does in fact affect me as I have real-life and internet friends who have ME, I wanted to say something today.

Awareness is a tricky issue. I remember not long ago Andrew sharing something from an autisic person's blog about autism awarenes. While a lot of that is specific to autism, a lot of it highlights the problematic nature of "awareness" of any kind of condition.
"Awareness" is a vague goal... Awareness of what? Awareness of what autism IS? No, no one exactly knows and that's too much like information. Awareness that adults need services too? No, we don't look cute on their posters. Awareness that autism is more than just people smearing shit and banging their heads? No, that makes us sound too much like people...

Please be AWARE that autistic people are just that, PEOPLE. We don't need the dehumanization that nearly invariably comes with the "human interest" stories...

Please also be AWARE that we are AWARE of autism year round, and thus don't necessarily feel the need to do more than we do every day-namely, being ourselves.
With only a few words changed -- the experiences and stereotypes are obviously different for people with ME than people on the autism spectrum -- I hope you can see what I mean.

And yet as a person who does not have the thing that today is meant to be "raising awareness" of, I am conscious that I can't speak with authority on what people with ME need or want or think. (Though I think a lot of Chronic Illness Cat would be a decent start.) All you need to do to be nice to people with ME is to treat them like people. Take them seriously, trust them to know what's best for themselves, offer help unobtrusively when it seems appropriate, invite them to things even if you're not sure they'll be able to come because it's enough that you want them to be there.

All this seems obvious but can prove bizarrely difficult for some people, who only see the condition: for instance, my parents met one of my friends with ME, and since we were going out in town she was using her wheelchair because her pain gets a lot worse if she walks too much, so now my mom calls her "the one in the wheelchair." ME can have a big impact on a person's identity because it forces people to sacrifice a lot of things that are important. As my friend [livejournal.com profile] greyeyedeve says about having to reconsider abilities and talents: Sometimes this means coming to terms with a significant change in the way you see yourself, which, if work/study has been important to you, can be devastating. Sometimes it means changing or relearning the way you do things or starting something new and different which can be scary, even for people not currently ill or disabled.

It is a solemn thing, this awareness. There are things to celebrate and be glad of, some of which she mentions further in her articulate and moving post. There are things no one can fix or help, but there are a lot of things we can all use this awareness, newfound or not, to do: to be kinder to each other, to be more respectful of people, to be mindful of our place in the world and all that we have and all we can contribute.

You can read a lot more, and find a lot of links, about ME and the community of people who care about it by following Twitter hashtags like #May12th.