Truth and beauty, ups and downs

"Why do these things always happen when I'm with you?" 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.

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.)

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.

(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!"

"What?!"

"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!"

"So--"

"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.

"...t's time to start thinking of autism as an advantage in some spheres, not a cross to bear."

Start?

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.

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.

I got a letter from the DWP today explaining exactly why, as a phone call I had a while ago told me, I am getting no money.*

They have a points system, and you have to accrue enough points in one or more categories. Nice, huh? Anyway, guess what? ...I failed! I got no points for anything. With an explanation of why (which just involves the words "You have no difficulty..." followed by whatever problem is described in that category) next to each 0.

So not only have I got no mental illness, I HAVE NO DIFFICULTY SEEING. Says so right there in black and white.

I know they do this to everyone. I know I can appeal. Though news of another uphill battle, after the exhausting, stressful time I've had lately, is pretty much the last thing I needed.

I did everything I always do; I wrote down the names of the things wrong with me, I explained that they're not entirely correctible with glasses. This is a script I have known as long as I remember knowing anything.

And yet it keeps going so badly. As I wrote here, the last time I had my eyes tested I was trying to figure out what needs to be done to get myself registered blind in the UK. The optician asked me “What makes you think you’re partially sighted?" and I knew I was doomed. As I said then

She [the optician] said, “Your vision is a bit down but I’m not sure it’s enough...” She promised to check it out for me and said she’d give me a call if she could write a letter to my GP, the next step in the process of getting me registered blind. But she emphasized that if she couldn’t do anything more I wouldn’t hear from her.

I knew I wouldn't, from the way everything about her body language and tone of voice was dismissive.

What makes you think you're partially sighted?

In that entry I link to, I talked about what made me think that: everything about my childhood. My parents, teachers, "vision impairment caseworkers," all drumming into my head that I needd all these different things I didn't want, didn't feel I needed, and every last fucking time being steamrolled, maybe because I was just a kid, maybe they just thought I was in denial.

I’m not sure what to think: is this what I should have expected? Despite having it pounded into my head that I am visually impaired, as I said I always noticed that I was less blind than the other blind kids. I don’t always feel disabled or think of myself as disabled; I can go hours and days without remembering that I can’t see as well as other people, which I know is a luxury that lots of disabled people don’t have.

Lots of what I’m tempted to call “real” disabled people. But I know this is a common thread too, the person who thinks they’re not as affected as those “proper” disabled people...

Or is it just a facet of how difficult it is for people to get the help and support they’re entitled to? I’ve witnessed that myself; just lately a friend of mine who’s no more disabled than she used to be has suddenly been granted a higher level of DLA and all kinds of bennies like free travel passes. Which she should’ve had a long time ago, and nothing’s changed now except before they said she couldn’t have it and now they’re saying she can.

Which just illustrates exactly the kind of problems I'm having with the DWP now. I know I can appeal. I know they reject everyone for everything at first if they can possibly help it. But to do it so egregiously, to tell me I have no problem seeing when I spent my childhood being told I had immense problems seeing and then spending my five years in the UK trying to convince someone, anyone (other than my friends! hello, lovely friends) that I have any problem at all, and it seems like I just keep failing and failing at it.

I have never wanted to shout about my disability -- I've hesitated at many points in my life to even call it that -- and yet now I can shout until I hear it echoing off the rafters and still no one in a position of authority believes me.

* This doesn't answer the question of why I never have been, as you're meant to from the time you start the claim; I still need to figure out if my sodding bastarding NI contributions are now associated with the number I am now using, rather than the one to which they were issued to me, which apparently never existed. Yeah.