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Friday, March 13th, 2015 06:59 am
1. People stare at you in a way that screams, even to me who isn't great at reading facial expressions, "No need to pretend politely not to stare if it's a blind person you're staring at!"

A little part of me wants to yell "I can see you!" But it's more fun when they all think that I can't. It's like overhearing conversations people think I can't hear because I've got headphones on, apparently never guessing that it's not some young persons' hippity-hoppity music but only ever an audiobook or a Radio 4 podcast playing into them.

2. People really stare at you if they see you suddenly stop walking, take your phone out of your bag, and let the cane dangle from its cord on your wrist as you reply to the text you just got. As if blind people, what, can't use mobile phones? Don't have friends to text them?

That happened to me a couple of times yesterday; funniest thing I'd seen in a long time.
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Tuesday, March 10th, 2015 02:49 pm
Initial results of going outside with new white cane: most amusing.

So, I needed to go to the pound shop and Asda anyway, and I figured I might as well take the cane (a shorter one, for your partially-signted rather than blind person) out for a spin too. I'll be getting proper training on how to use it eventually, but the woman from the council's sensory team left me with one today, for which I'm glad, so I can muddle along with it on my own in the meantime.

I hope to write more later how I got it and the similar fun this morning entailed, but I want to write this before I forget, and then I need to eat something.

So, more detailed results follow.

Seconds before someone nearly walked into me: like, 2. Someone was walking down my road reading paperwork and had just about gotten in front of my house when I left it.

People still happy to walk right into me: most of them. Which, 1) I completely expected, and 2) the trained-not-to-stand-out part of me found endearingly familiar, almost glad in a way that I wasn't getting any special treatment.

Patronizing middle-aged northern blokes: 1. He was telling me to cross at a crossing where I'd just pushed the button. I think he was either trying to reassure me or justify to himself why he wanted to cross before the little green man appeared. I wish he'd have just left me alone -- it's a bastard of a crossing anyway (Mathews Lane/Stockport Road), because it's not busy but you've got to wait a long time for the lights to change, so pedestrians are always walking in front of people trying to turn off Stockport Road, and I am almost always happier waiting even if I do feel silly when I'm standing in front of a currently-empty road.

Suddenly helpful people in the inaccessibly all-automated-tills Asda: 2. I told them both I was doing fine but one hovered nearby anyway, and it meant I didn't mind so much that I was taking my time and scanning my four things very slowly.
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Wednesday, February 18th, 2015 08:40 pm
I started to write this in reply to [livejournal.com profile] momentsmusicaux's comment in my last entry, but it just ballooned to such a size that it seemed unfair to saddle a poor little comment with a response like this. Anyway I thought there was some good stuff in it, so I could just about justify dragging it into its own entry. It meant I could add a lot more too, of course!

The comment I'm replying to says, "I think it's fairly common for people with a disability to feel they're some sort of fraud because they're not as disabled as other people."

So I say:

Yes, it's a kind of impostor syndrome I'm familiar with in multiple circles, thanks to my activism: as well as disability, it's common to hear people who think they might be bi fret that they're not "bi enough," if they don't have crushes/a relationship history split exactly evenly among the more popular genders.

I'm generally prone to impostor-syndrome-like failings anyway for a number of reasons, but the disability thing is complicated a little by how invested I was as a child and teenager in fitting in completely, in seeming exactly like all my sighted peers. I resented some adjustments and special treatment because I didn't want to be disabled (complicated further by the fact that I also resisted some unhelpful or unnecessary ones foisted on me by well-meaning people (ie, my parents, my teachers, my caseworker and specialists in various things, and certainly doctors) who had no idea of what I actually could benefit from because none of them listened to or believed me when I told them anything about what I could or couldn't see, what was easy or hard, etc.

So, constantly reinforcing "I'm hardly even disabled or maybe I'm not at all!" messages seemed preferable to me in every way: it fed my childish desires for acceptance via conformity, it allowed me to rebel in tiny ways against all the adult authority figures in my life, it reaffirmed my idea of myself, based on my early academic success, as a capable and successful person in ways that I was -- however wrongly -- convinced at the time that a disabled person couldn't be.

I grew up immersed in a lot of ableist thinking. I was blind when I was born and the fact that I've been able to see since I was very small was of course held up as a miracle, an unalloyed good... and "being less disabled is better than being more disabled" isn't far from "less disabled people are better than more disabled people," with of course non-disabled people being the best of all...

It took me until my late 20s, when I was diagnosed with anxiety and panic attacks for unrelated reasons, to realize how much anxiety my attempts at seeming normally-sighted were causing me. My hesitancy to say "which gate is the flight to Minneapolis?" or "what veggie options do you have on your illegible menu?" or "I won't watch subtitled anime" or "it's no good telling me 'you can't miss it' because I'll still get lost" let to all kinds of stress and misery that I now realize was perfectly avoidable, but until I'd had anxiety singled out and identified as a pathology, struggling in such situations was just normal to me. I'd never considered that there could be any other -- much less better way to cope than stoically muddling through. I still see my mental and physical health issues as being irrevocably entangled and I still haven't quite forgiven young-me and all the adults around me for making/letting me become so warped by a disabling society that I shredded my own mental health as well.

It's entirely possible I have predilections to anxiety or panic attacks that would've manifested anyway, but even so, the decades of holding myself to literally unattainable standards and berating myself for only living up to them 99% of the time -- because I did have a very high success rate for most of my life (and I still can't tell if there's objective deterioration in my eyes now or I'm just more at ease with seeking and accepting a level of help I'd have always benefited from) -- can't have been good for me.

Having been told by both the first optician I ever saw in the UK and the DWP that I have no difficulty seeing really set me back. I know the DWP will deny anything's wrong with anyone but I was still surprised how much it affected me to see that on the letter; I remember it still, I could tell you exactly what it looked like and where I was standing when I read it, four years ago. (I still don't understand that first optician I saw; the one I've been to since didn't offer even the slightest hesitation or challenge when I said I wanted an eye hospital referral to get myself registered blind.) So the tables have been reversed on me: part of "the system" since birth in the U.S., I wanted out. Being "off the grid" since I moved to the UK, I want back in. And I do have small, probably irrational concerns that I'm still "not disabled enough."
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Wednesday, February 18th, 2015 03:37 pm
Having basically given up on the job-hunting treadmill I was on, because I discovered I was playing a game I didn't want to win (more on this later), I've turned my attention to Sorting My Life Out.

First, the whole "blind" thing.

While this was partly spurred by the RNIB website having job-related stuff that looked better suited for me than it actually turned out to be, I also asked them what I actually have to do to get registered blind (which is just an eye hospital appointment, urgh, but lovely [livejournal.com profile] greyeyedeve,, and about help with stuff like getting a white cane --

Did I talk about this here? I can't remember if I did or not. After a lot of "but I'm not blind enough" and worrying whether my eyes were getting substantially worse, which would be bad, or whether I was getting significantly more aware of problems that had always been there and might be helped by stuff that I'd, all my life, been led to believe was only for other people. Whenever I cautiously mention to anyone that I'm thinking about the possibility of letting the idea of getting a white cane cross my mind, they seem as enthusiastic about the idea as I am wary, which has helped reassure me that I'm not, I dunno, appropriating the tools of "real" blind people or trivializing them even though I'm sure I'll feel like a phony for a long time if I do end up with one.

I know these are dumb ideas. I have a lot of dumb ideas lately. If only knowing them to be so was enough to banish them.

So for that I filled in a web form on the council's website, but I've heard nothing back. It's been a month now, and I really need to call them and nag them about it, but it's one of those things I never quite get around to doing.

I did finally talk to someone from Action for Blind People this week (after weeks of them being so flaky and bad at communicating that I actually found it quite comforting to be dealing with people on my level), who were suggested by the less-helpful-than-the-website-suggested employment scheme the RNIB directed me to, and while AfBP didn't seem any more helpful to my situation (like so many things for people with sight loss, they're geared up for people who've only recently lost their sight or are just aging out of school systems and children's social services so joining a new bureaucracy. I'm not really in either group and have very good sight by the standards of these things so much of what they offer isn't useful to me.

Anyway, one of the things AfBP might be able to help me with is chasing down some kind of help from the local authority, though I know from people who've used it not to expect too much from adult social services. Of course there's nothing to stop me buying a white cane myself but I could really do with some information and encouragement that, y'know, my taxes are supposed to be helping to provide, and I'm not in a rush. Though I do find myself increasingly noticing how many situations I find myself in that would be easier if people knew I can't see very well because I think they just think I'm being awkward, or they don't know why they startled me because they have no way of knowing how atrocious my peripheral vision is, or whatever.

The AfBP lady was also very nice on the subject of me being scared of eye appointments and said she deals with lots of people who feel like I do, so I feel a bit less mental and weird on that subject as well, which helps. It's one of those things that I find perfectly understandable in other people but totally unacceptable in me. Yes! I know this is another of those dumb ideas. I think it's because I know so many more people who think optician's appointments are no big deal than I know people like me; I'm comparing myself to the wrong things. (Also I just have to remind myself that a lot of my scary memories are about things that simply will not happen again because I'm an adult now and people will listen to me and the fact that I might not want something to happen to me matters -- of course sometimes things I don't like will still happen, no doubt, but I won't be ignored and my anxieties won't be dismissed like they always were on my innumerable visits to eye specialists as a child, I won't be there for the convenience of doctors who find me an interesting case study because I will be limiting myself to tests that actually might benefit me.)

So yeah. After weeks of phone calls and e-mails to never-quite-the-right-people, waiting for people to get back to me, or getting long slow processes in motion, and now depressing these things all are, because it's like trying to move a huge boulder all by myself, it just feels like nothing's ever going to budge. I still haven't shoved the boulder very far, but I'm starting to notice it moving a little bit, enough for me to keep at it. I go to the eye hospital a week from tomorrow, and when I've got that out of the way I can do a bunch of other stuff that requires the piece of paper saying I'm blind. There's been a bit of progress on the whole "what kind of job can I get?" front too, but that will have to wait for another time.
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Sunday, February 1st, 2015 04:47 pm
This is an article about how badly prejudiced our society is against autistic people.

It's about a lot of other things, too, of course: parents' desire to protect and control their children, the manifestation of anxieties about a world too complex and specialized for most of us to feel we can grasp, the power of narrative over facts and anecdotes over data.

Those are all the things I expect that story to be about. I expected it to be sad and frustrating. I didn't expect quite so much of it to be about how awful it would be to have a child who is autistic. I didn't expect it to make me so angry, and so protective of the neurodiverse people who form so much of my circles of care that I sometimes feel like I'm the neurologically atypical one.

I keep coming back to this quote, from a mother talking about the MMR vaccine.
“It's the worst shot,” she said, with tears in her eyes. “Do you want to wake up one morning and the light is gone from her eyes with autism or something?”
...Or something?! I can't let this go unremarked-upon. What is it you think you're actually saving your child from? What the hell are you even talking about here?

That makes me so goddam angry because you will never see anyone's eyes light up like Andrew's when he sees that picture of the baby gorilla and the stethoscope or when he writes a poem using as many words that rhyme with "penis" as possible. How wrong do you have to be about autism before you think that it will steal your child from you? How can you think that's worse than the child getting a deadly or deforming disease?

Just yesterday Andrew said again that he hates Autism Speaks because they want him dead. I'm sure they're responsible for a large chunk of these people thinking that autism is a worse fate than death...with the corollary that having to parent a child with autism is even worse than that, of course.

How many kids wouldn't be getting measles, how many families wouldn't have to keep their unvaccinateable tiny babies and cute-bald-kid cancer patients shut in, how much less suffering and fear would there be, how much difference would it make in just this one respect if our society was not so afraid of and ignorant about autism?

Of course there's the point to be made that absolutely no connection has been found between vaccines and autism, and this is the way the argument is usually framed. That's fine as far as it goes, but I want to add something else to it: so fucking what if it did? Even if there was a 100% certainty that a hypothetical child of mine would get autism from a vaccine that would protect her from diseases like measles and contribute to public health, I'd still fucking do it. Autistic people are not a tragedy. They are not the worst thing that can happen to non-autistic people. Far from it: they've contributed to most of the best things that have happened to me.
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Friday, January 16th, 2015 09:22 pm
Andrew resisted referring to himself as anything like autistic up until several years after I first met him.

His reluctance seemed to arise partly from not having -- or, at that time, wanting -- a formal diagnosis and partly from the people who had what we called Internet Asperger's, a self-diagnosis that guarantees accountability-free insults and bad behavior to anyone online, a get-out-of-consequences-free card that anyone can play by simply saying the magic words "it's not my fault, I have Asperger's."

Andrew is the furthest thing imaginable from that kind of person: he is hyper-aware of his difficulty in decipering nonverbal communication and is thus constantly apologizing pre-emptively just in case he's upset or offended someone and hasn't realized it. So he wanted to clearly differentiate himself from these allergic-to-accountability people by avoiding their self-description.

I understood, respected and did my best to support him in his decision not to claim autism as a label for himself. But a lot of things got better or easier for both Andrew and me when he started to realize how much of his experience fit what we gradually discovered were both the strengths and the difficulties of people on the autistic spectrum. A surprising array of seemingly-unrelated things, from his Princess and the Pea-esque sensitivities to the fact that he needs more Novocaine at the dentist than most people because he registers pain in a way most neurotypicals don't, suddenly make sense, make more sense, or have some evidence backing up what seem to otherwise be peculiar or inexplicable characteristics. It leads him to retroactively look on his experiences he had in university and in relationships more accurately and more kindly than he did at the time.

It has helped me appreciate the work I do in interfacing between him and the world, and it's even might explain why I'm good at being married to him, because my visual impairment leads me to share more traits in common with people on the spectrum than I would otherwise and there's a theory that autistic people form successful relationships with partners from different cultures, because those people go into the relationship expecting to have to work harder at communicating than perhaps someone from the same background might do.

It's hard to think of any downside to saying that Andrew is autistic that isn't about the sticgma autistic people face from asshoes or the well-intentioned ignorance they face from almost everybody else.

#
Through my early twenties I found that many guys would hone in on my “cute eccentricity,” my “beautiful weirdness,” and, yes, my “adorable awkwardness.” Autism didn’t come into it for them — I was not what people imagined when they heard the word. I didn’t rock in anxiety, I didn’t speak in a monotone, I laughed and danced and engaged with people, showing interest in their work and passions. Here the common misconceptions about autism were both my ally and my enemy: they allowed me to hide, and to embrace a status as “off-key yet normal,” but they also damaged me by giving fuel to the lie that I was just a bit odd, making it all the more difficult when it blew up in my face with someone yelling: “What the hell is wrong with you?”
#

From what I can tell, the impetus behind this "you're not autistic, you're just endearingly quirky" is extremely similar to that which leads people to tell me things like "you're not fat, you're beautiful." What seems to be the message, in both instances, is that's a word we use for people we don't like, and I like you, so it can't be said of you!

Maybe a better way to fix that would be to stop thinking these words can only be insults, fit only for people who are to be either pitied or despised -- if not both.

#

I had a lot of random conversations during the week I spent looking after my mom in August. One of them, and I can't even remember how now, led to her telling me that Andrew isn't really very autistic. "He only has a touch of autism," I distinctly remember her saying, because I remember thinking that makes it sound like it's something he dabbles in. When he can find the time.

Yeah. No.


And then I thought And she should know better! She knows enough about autism... but of course, that was precisely the source of the problem. She knew about autism from working with an autistic boy who needed a ton of assistance to get through the mainstream school he was in. He was called "low-functioning" and fit a lot of the ideas people have about what autistic people are like -- he was difficult to communicate with, he needed strict routines, stuff like that. And a friend of my mom's has an autistic son, who is a bit "higher functioning" but still needed tons of help in school and has some stereotypical traits. So this is what her idea of autism is. And Andrew doesn't really fit it, so he only has "a touch of autism."

#

I think she thinks she's paying him a compliment, by saying this. "You're not that autistic" is probably good, in the same way that "you're not that unattractive" would be -- with all the overtones of trying to be reassuring and supportive...and of failing oh so hard.

Like the people who reassure me that I'm totally not fat. Because I'm great. Like those are mutually exclusive states.

Thanks, but no thanks.
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Thursday, January 15th, 2015 06:41 pm
I can tell I need to get my hair cut again -- not just because I want to (though I do! that hasn't been enough to compel me to the barber's, though), but because I'm starting to get clocked as a woman more consistently in public.

I know this because men are no longer making any attempt at moving out of my way when they walk towards me.

I shared an image on Facebook a little while ago that said something like (of course I can't find it to check exactly, because Facebook) "My sister is doing an experiment: she's no longer moving first when men walk towards her. So far she's collided with 28 men."

I'd never realized before that this was a gendered problem -- I thought I was in danger of walking into people just because I'm blind and processing many fast-moving targets is hard for me -- but it totally makes sense that it is. Of course I'm sure the blind thing doesn't help, but it definitely is less of a problem if, though I'm not in any way trying to pass as anything other than the cis woman I am, sometimes people's encounters with me are brief enough that they don't necessarily treat me like I'm a woman.

I was reminded of this today when I was out with [personal profile] magister, because at least once or twice, a few young guys passed us, walking the opposite direction, and spread out to get around James. One of them, in so doing, changed his trajectory to walk straight towards me. James was worth evading, but I wasn't.

As I did that little dance of suddenly stopping and resisting all my momentum in hopes of avoiding a collision, I mused that this was a surprising thing to have to do, but also that it was very familiar to me.

I mused, as I walked on, that the two feelings, surprise yet familiarity, seemed to indicate that I was accustomed to having to perform these kinds of evasive maneuvers, but that I hadn't recently had to. Which fits with my unthinking trend towards a slightly more androgynous appearance... but also the fact that today I was wearing a fuzzy hat with cat ears on it, which would itself probably be enough to get me assumed female in most contexts!

And this is when I realized that the bit of self-bribery that might induce me to actually bother to get my hair cut again is telling myself that it'll probably make me have to stress less about running into people. Sad, but true.

(And yes, I know there are other ways to make my body language more physically assertive. I'm sure there are plenty of cis women who can stride unflinchingly through crowds. I know gender (or perceived gender) is not the be-all and end-all of how people treat you. But getting my hair cut does seem to be the most effective, and least-effort, thing I can do to improve my stress levels in crowds of people.)

And anyway, the hair's long enough to make my ears itch, and that's no good; it must go.
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Saturday, December 20th, 2014 02:48 pm
Part of my (what [livejournal.com profile] barakta calls) "criptax" was paid today by me not noticing in Asda that one of the things I'd bought didn't make it into my bag until I got home.

I fucking hate that Asda has been taken over entirely by self-service tills because I'm so shit at them and they stress me out so much. And today it was super crowded and I felt under pressure to get out of the way before I'd had a chance to notice I'd left something behind.

It only cost a pound and it was the least important thing I'd gone to buy, but I'm still unduly upset. Probably didn't help that the short walk to Asda and back was full of cars trying to run me over.

I'm feeling, somehow, particularly "blind" lately and it's really getting to me. I'm finding it really hard to manage how miserable I am about this objectively tiny thing.

But I'm about to go out to my own birthday party, and I've rarely been more ready for cake and friends and silliness than I am now. That'll be good.
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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.
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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.
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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!
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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.
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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.
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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.
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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.
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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.
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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.
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strangecharm: (Default)
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"!
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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.)
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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.
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