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Thursday, June 25th, 2015 12:44 pm
I get this question a lot (most recently in the midst of a stupid new layer of airport security theatre that the U.S. has apparently developed). Not only is it rarely relevant -- this airport worker was just feeding his curiosity, it wasn't relevant to anything he was doing -- but it's actually an impossible question for me to answer.

Because...the only answer I have is "Everything." I can see everything I can see. I don't really know what I'm not seeing, except by other people's reporting and how their behavior differs from mine.

I end up having to guess at what kind of answer the person really wants, so listing off random things I can see until one makes them look interested. (Usually I start with "I can see your face" and they like that because everybody likes to think about themselves).

It's so much easier, if you really have reason to want to know "can you see my face?" or "can you tell where you're going?" or whatever, to just ask that. The open-ended questions are much harder for me to cope with, and also lead me into "being an ambassador for the thing about me that other people don't run into very often," which I don't always have time or energy for. I'm really happy to answer reasonable questions (when I think they're reasonable!) but I like to know when that is what I'm doing and not just indulging someone's curiosity.
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Saturday, June 13th, 2015 11:29 pm
The help I'm getting from the sensory team, while helpful, is a bit nerve-grating on occasion, too.

Like the way the Rehabilitation Officer I've been dealing with (and I really hate that title, too, but that's another rant), the one who gave me the white cane and the talking gadgets and is getting light fittings replaced in the house and stuff...she's also the one who does the guide-cane training I'll eventually get, and she keeps telling me about all the benefits thereof.

Not that I need convincing, I'm more than happy to do it. But she's said (as have other such people I've dealt with) that I don't offer as much resistance as they're used to getting, which I imagine is a combination of me not having the traditional British reticence, me not actually being new to sight loss, and frankly I think because I'm of a younger generation than most of the people the council will be dealing with.

Anyway, so I think I get the same spiel she gives everybody she deals with, and thus I've heard about all the good things I will get from being "rehabilitated" with white-cane training. She talks a lot about "building your confidence," enough that my reaction to this, which started out as a mild grimace (these conversations are mostly on the phone, so that's okay), has evolved into full-grown teeth-gritting and eye-rolling.

I do understand how the actual loss of someone's sight would zero out someone's confidence. That's as true for me as anyone else -- if I lost any sight I'd probably stop leaving the house or cooking or anything. As someone who's only ever gained sight, having gone from completely blind to, well, this when I was still too young to remember it happening, I have had to build whatever confidence I have at this level of sightedness. And I think I've done pretty well, actually. I was an independent baby -- apparently one of my first favorite phrases when I learned to talk was "I do it!" and I broke my arm as a toddler climbing out of my crib because I was so unwilling to have a nap just then. I was a talkative child and a teenager who hated my peer group because I thought I was better than them. I've never been lacking confidence.

And it isn't confidence I need to navigate the world. I find this cringeworthy because it makes it sound like it's my fault if I'm not always putting myself out there. I don't need to be taught that I deserve to "own my space" when I'm out and about. I know that perfectly well. What concerns me, adds to my stress, is that other people don't think so. I am faced almost every time I go out with someone nearly running into me because they were looking at their phones or they just charge out of shops without a glance to who else might be on that bit of the sidewalk. People try to sneak into queues in front of me because they think the stick means I can't see them at all (and I swear the metaphorical usage of "blind" to mean "doesn't know" or "doesn't care" -- such as "blind with rage" or "blind to the consequences of her actions" -- contribute to this attitude towards blind people...but that too is another rant). I tend to fold away the stick before I do stuff like get cash out of machines because I worry about seeming too vulnerable.

My confidence cannot exist in a vacuum. It is not solely my fault if I don't have enough. It's not our conditions that disable us disabled people; it's people's hostile reactions to us and the lack of accessibility as a general rule.

I'm not saying that my confidence or my approach to stuff doesn't affect my experiences and choices -- of course these things do, and they are important. I think this is just an example of where being new to the system, and thus treated like someone new to sight loss, means I don't quite fit and therefore maybe these things stick out more to me. Of course I do understand why things are this way: the services for people with sensory impairments stand a better chance of changing the impaired individual than they do the whole world, so it makes sense to focus on what they can help. It just irks me after a while to hear that all I need is "building up your confidence." Especially because that implies that I don't currently have much, which I don't think is true!
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Friday, May 29th, 2015 11:21 am
My second-favorite thing about this article on making Spain's Prado museum accessible to blind people is actually this:
Most visitors to the "Touching the Prado" exhibit are not vision-impaired. The museum provides opaque glasses for them — like blindfolds.
It's not just that I love stuff that puts sighted people more on my level.

Last Saturday, Andrew, [personal profile] miss_s_b, [personal profile] magister and I went to see a movie in the dark, or at least that's how I explained it when I was telling people my plans for the weekend. The rest had seen Carnival of Souls, the movie this radio-playish thing was based on, and I was just intrigued by the advisory group of blind and partially-sighted people who helped make this happen.

I didn't know what to expect, but I really enjoyed what I got: I was in a cinema -- people were jockeying for good seats out of habit, even though there wasn't going to be anything on the screen -- surrounded by other people, with noise-canceling headphones and the kind of cheap black nylon blindfold I've gotten on transatlantic flights.

The blindfold seemed a bit superfluous to me at first. After all, the room was totally dark except for the blue lights on people's wireless headsets, and the lights illuminating the stairs at each side of the auditorium like you always get in cinemas. But I thought I might as well try it, figuring it had been included for specific and deliberate reasons, and I quickly really liked it.

I listen to a lot of audiobooks, podcasts, radio dramas and suchlike these days. They've taken over most of the time I used to devote to reading. I do like them when I'm in the dark before I fall asleep, but I mostly listen to them when I'm on trains or buses, cooking, doing housework, knitting...mostly I like the audio stories for making whatever else I'm doing more fun, rather than it being the only thing I am doing. And the blindfold? Means that listening is really the only thing you are doing. Yes a lot of the same result could have been achieved by closing one's eyes (as [personal profile] miss_s_b did since she's allergic to the fabric the blindfolds were made from) but I really liked being able to keep my eyes open most of the time. And even if I meant to shut my eyes, they'd keep snapping open whenever it sounded like someone was whispering in my ear or something was crashing into me or whatever. To see no more than a faint glow from a few of the blue lights on everybody's headsets when my eyes did open was somehow both exciting and relaxing because I could be assured that I wasn't missing anything by not using my eyes. It felt, odd as this might sound, like such a luxury.

A huge part -- I'm sure I heard "ninety percent" somewhere, though I'm not sure if that's right -- of the sensory information a non-disabled person gets from the outside world is from their vision. Taking that way is going to do interesting things to our brain and our understanding and even memories of an event. Even for an audio-play-addict like me, this was a special and immersive experience.

One of those facts everyone thinks they know about blind people is that we have exceptionally good hearing/all our other senses are fantastic to make up for the lack of sight. Not only is that completely not true (deaf-blind people are a thing! also lots of conditions or injuries that might cause sight loss also cause other categories of problems), I think it's just a thing that sighted people tell themselves in order to feel better about the poor pitiable blind person. Sensory impairments don't improve a person's other senses, but they might improve how well we're making use of them, because we have to. Most people don't have to, and they -- understandably -- don't often choose to forgo ninety percent (or whatever) of the information they could potentially gather about the world around them.

Which brings me back to the blind people in the art gallery, and the sighted people wearing opaque glasses.
"It's kind of weird. I sort of kept checking over the top of the glases to see what I was touching, because you kinda can't tell," says Isabel O'Donnell, 20, a college student visiting Madrid from Buffalo, N.Y.
Of course you did. You can't tell until you do it enough to get used to it. I remember trying to feel the spots on the sheets of Braille a friend had. I could tell the surface was uneven but couldn't discern enough detail to be able to read that way. I was distressed by this -- figuring I was deficient in some way and that if, as I worried about a lot when I was a kid, I lost the rest of my sight one day I would be entirely cut off from reading and writing, probably my two very favorite activities at that time -- but had it explained to me that the ability to read Braille has to be taught, not just "these dots mean this letter" but also being able to perceive the dots well enough is a skill that has to be learned. If their brains are scanned, the nerves corresponding to the fingers they use to read are connected to better-developed areas of the brain than people who don't read Braille.

You might remember way back at the beginning of all this I was talking about the blindfolds for sighted people being my second-favorite thing about this article. For anyone who's wondering, my favorite thing is this picture:

Look at that guy, he's feasting on that art.

In another article on this subject (written in medium-grey text on a light-grey background, leading me to think this is a website more likely to talk about blind people than to them), someone who was born blind was making his first visit to the art gallery. "We learned all about the great Spanish artists at school, of course, but it’s only now that I can start to understand what made them special." Reading that gives me goosebumps, and makes me glad that blind people in Madrid don't have to feel that art galleries have nothing to offer them.
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Friday, May 29th, 2015 01:54 am
I joked to [personal profile] magister upon leaving the cinema that Mad Max was accessible.

I've got "accessibility" on the brain lately. It's a relatively recent addition to my working vocabulary, actually, arriving only a few years ago after a previous few years of hearing friends I thought of as "properly" disabled use it about events, places, communication and institutions. Since I've expanded my definition of "disabled" to include myself, despite my upbringing encouraging me to be "normal," I've found myself using it a lot more, too.

Just at the moment I'm in the middle of trying to apply for disability benefits and access other services for partially-sighted people like me (just tomorrow I have a follow-up consultation at Manchester Eye Hospital's low vision clinic, someone from Henshaws calling me about their hiking group because I've shown an interest in it, and I have to chase up some paperwork with the council's sensory team so I can get training on using the white cane they supplied me with.

So perhaps this gives you an idea of why such language permeates even my time at the cinema.

I remember the then-poet laureate of the U.S., Billy Collins, giving an interview in which he said that he doesn't like it when his poetry's called "accessible" (unfortunately I think his explanation of this at the time involved an ableist comment about not wanting his poetry to sound like it needed a wheelchair ramp, and I'm really not sure what's so bad about being anything like an inclined plane in any way!) and that he prefers the term "hospitable." Poetry websites like the one linked above gush that "the experience of reading his work is indeed akin to being invited into the home of a cordial and considerate host." While the last thing I want is to perpetuate any negativity about accessibility or particular things like wheelchair ramps which foster it, I do like to ponder on the overlapping connotations of these two words. I ponder to what extent Mad Max: Fury Road felt hospitable to me.

Having read those tweets a week or so ago, I was even more excited about [personal profile] magister's and my plan to go see this movie today. He was one of the first people I knew who watched it, and immediately afterward he said he wanted to see it again.

Since then, the praise for this movie has poured in; the only criticism I've heard of it is that the post-apocalyptic world is thoroughly, implausibly white, something that really did bug me while I was watching the movie (I also found just enough time for my mind to wander to the bigots' easy argument if they wanted an in-universe justification for their bigotry: white people would start from a pre-apocalypse advantage in health and access to resources that might contribute to them surviving preferentially...but then I thought by that logic, people of color and other impoverished and disadvantaged groups are already used to surviving on little or nothing in an environment hostile to their survival, so they should damn well survive and continue doing badass things!).

Feminism can't ignore race if it is to be worth anything. Precisely the things that made me feel so positively toward Fury Road are keeping others from feeling that way. It was easy for me to identify with Furiosa, loving as I do to imagine myself as smart and tough and capable even as I know that really the only thing I have in common with such a character is that I've sometimes had my hair cut like that. Even though she kept her (sensible!) clothes on all through the movie and didn't even snog anyone, it really affected my experience of the film to have her, and so many of the other main characters (Bechdel-test fans keep pointing out that at one stage there are twelve named women on the screen who are having a conversation that is nothing to do with men), played by a woman.

It actually had a surprisingly emotional effect on me, seeing this movie full of women who were for the most part not calling attention to their gender but fulfilling the old cliché about feminism being the radical notion that women are people too.

I don't even know if the story about Alien being written with the expectation of a man as Ripley but nothing changing when Sigourney Weaver was cast instead are true or not, but when you watch the movie they feel true. And it feels true for Fury Road too: most of the the parts played by women could very easily have been cast as men (with I suppose the exception of the "breeders" but c'mon, futuristic dystopia; surely the nuclear apocalypse could've given us seahorse-like male-incubation genes, right?) with no apparent detriment to the movie.

But there would have been some detriment to the movie. I can tell because I had this weirdly emotional reaction to just the sheer number and qualities of the women in this movie. I felt good. I felt...like I was "being invited into the home of a cordial and considerate host"! If this is what the cis white straight able-bodied dudes get to feel like whenever they consume practically any cultural artifacts, no wonder they don't want to give this up! Or even share. It's a rush, to feel that something has been tailored to suit you. This "hospitable" is some powerful stuff!

Even more powerful, perhaps, was the realization that I got to enjoy this action movie the way most people get to enjoy most action movies. I was actually stupidly grateful for this.

At the James Bond exhibit [personal profile] magister and I went to last week at the London Film Museum, I noticed I got a lot more out of the clips of the older James Bond movies than I did of the newer ones, even though I like the new ones, just because they're easier for me to follow. The quick cuts and close-ups more common in modern filmmaking just mean that I'm presented by a series of contextless colors and shapes that my brain can't process quickly enough to make much sense out of them.

[personal profile] magister said that even he couldn't follow something like the beginning of Skyfall completely well, and then when I saw this tweet saying something similar about the new Avengers movie a few days later I started to realize that even though this was a problem I'd never heard anyone talk about before and had only recently started articulating myself, this isn't just one of my Blindy McBlinderson problems.

Which is great! Because it gives me hope that something will be done about this. Like all the people who hate 3D and won't pay for it, they're helping my cause of removing this scourge from movie theatres and leave room for more 2D showings so I can actually go see stuff I want to!

I expected to enjoy this movie, but I didn't expect a car chase to elicit such emotional responses! Between the ease of following a two-hour car chase (I was so cheerful at the end because this movie had been no work at all for me, visual-processing-wise, which is so weird you have no idea) and all the women making me glad I'm a woman ([personal profile] magister pointed out that the old lady who, upon examining one of the "breeders" exclaimed "this one has all her own teeth!" is probably the Granny Weatherwax of the Mad Max universe), this was really a remarkable movie for me.
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Wednesday, April 29th, 2015 10:29 am
My "Support Plan" from the sensory team arrived in the mail today.

My surname is STILL spelled wrong, even after I've tried about three times to get it changed (and I have gotten my e-mail address finally fixed, which contains the correct spelling of my name...). My date of birth is wrong, interestingly; that was new to me.

And it just went downhill from there, really. Stuff I can do it says I never do. Stuff I can't do it says I have no difficulty with. Pages and pages of reading about myself in the third person and not recognizing who they're talking about. Which happened to me all the time in school, and which led me to just throw the bundle of papers down on the table.

Yes, it's nice that now that I'm not in school I can fix this. I'm still getting used to being listened to and taken seriously for anything to do with my eyes, because that just never happened in my endless specialist appointments at the Mayo Clinic and my IEP meetings at school with my parents and teachers and the visual-impairment caseworkers. So yes, it's good to know I can fix this and hopefully things will get straightened out. But just thinking of how much work it'll be to do this -- seriously, I started off just adding corrections but I think I might have to re-write this whole document -- makes me tired and sad.

It'll be a struggle not to just curl up and ignore this, and probably everything, the rest of today.

Oh well. I was about to make cheese on toast when the post arrived, because I haven't eaten anything yet today. I suppose I'll go make myself that, even though cooking is on the list of things I can't do for myself.
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Monday, April 27th, 2015 02:44 pm
 photo IMG_20150424_144240.jpg

Having told [personal profile] magister I'd rather do things than have things as presents, he arranged for us to go visit his sister and brother-in-law, who live in Hove, for a long weekend.

Yes, nowhere near my birthday. I knew it'd be in the new year. March was the first time everybody's schedules coincided and trains conspired against us then, so it got pushed back a month. Which seemed devastating at the time (my ambitions for this year having led me only to frustration and the conviction that nothing was ever going to get better and I wasn't capable of any of the tasks confronting me...in other words, I really really needed a break), but probably meant we had nicer weather for it than we would've otherwise. Which is good since our interests are mostly wandering around, looking for bookshops and nice pubs and parks to sit in and suchlike.

We arrived not long before James's sister and brother-in-law finished work on the Thursday. I'd seen their house extremely briefly when we were there for their wedding last summer, but this time it really left an impression on me. I loved almost everything about it: the black-and-white paving on the front walk which I said reminded me of dazzle ships, the wooden floor, even how white all the walls were painted.

Having helped and talked with my friends a lot about decorating lately I am compulsively noticing the color of everyone's walls, but I think this would've been striking anyway: everything was white. Which my fellow DIY friends have both described as "cold" or "clinical" lately, but to me this looked simple, clean and elegant and bright, especially with the ridiculous amounts of sunshine that greeted our arrival. I spent the whole weekend admiring this and wanting to make it work in my house, though I fear we, and our house, are too scruffy to pull it off.

I do want these shutters, though.

This isn't a great picture of them (oh look, there's my finger in the corner of the shot; I am so good at this) but hopefully you get the idea. They can be folded over the windows, and the slats on each section can easily be turned to whatever angle you want, too. It'd get rid of the horrible net curtains (which Andrew insists on but I hate), would keep us from slowly pulling the horrible curtains off the horrible curtain hooks, and just make me really happy, I think.

Our white room had (in addition to more of these shutters) a lush white duvet and white towels neatly laid out on it when we arrived. I could easily have believed I was staying in a B&B. Only it was, for me, way better than a B&B: it wasn't bed and breakfast, it was bed and dinner. I got my own cornflakes and tea for breakfast, but I couldn't help with dinner beyond the extent to which hanging out in the kitchen with a glass of wine and chatting was help. Of course there are few things I love more than someone else cooking for me, but even so I luxuriated in the food and drink I got this weekend.

[personal profile] magister and I even managed to find a great Italian restaurant that gave us simple food made from amazing ingredients at a price that didn't make our poor northern wallets cry. (Poor James was horrified at the price of the beer we got while waiting in London between trains, and at everything in Brighton. I knew Brighton was as bad as London but this kept coming as a shock to him.)

That was on the Friday, when we were on our own while normal people were working. We walked from Hove to Brighton. Having been given the directions "go to the seafront and turn left," we only realized when we left the house that no one had exactly told us what direction the sea was in. James said we could stop and ask anyone and I said I was not going to go up to a stranger and say "Where is the sea?" Anyway we struck out and found we were heading in more or less the right direction.

We walked along the seafront until I started recognizing stuff from the other time I've been in Brighton, Autumn Liberal Democrat Conference in 2012. I loved Brighton then: getting up at eight to be on the LGBT+ Lib Dems stall by nine, talking to people all day who thought we already had equal marriage or wondering what the acronym stood for, wanting all of Jen's badges (especially "Vince was right" and "coalicious," though), getting Jeremy Browne's photo taken in front of our banner holding a little teddy bear, forgetting to eat, arguing with people on one subject and agreeing vehemently with them on the next, shouting Awkward-Squad things in the debates, having someone (probably [livejournal.com profile] diffrentcolours remind me to eat, going back to [livejournal.com profile] plumsbitch's where I was staying, where he'd have likely made something amazing to eat and we'd stay up until four in the morning drinking wine, listening to music, chatting...and then I'd wake up at eight again the next morning and start the whole process over again. I was almost dead by the end of it, especially after Glee Club that last night, but I loved it.

So anyway, I knew by the time we walked past the cinema it was time to turn left again, off the seafront, because after that it was just tat and fish-and-chips shops, so we walked down what I now know is Queens Road and found a secondhand bookshop and two chocolate shops on the same road. I bought myself a book there on the history of women in the Middle Ages, and then I bought a bunch of chocolate -- I didn't know Montezuma was based in Sussex but having learned this I now think they're keeping all the best stuff for themselves. We bought white chocolate for [personal profile] miss_s_b and mint chocolate to share because that's my favorite, and oh man it was the best mint chocolate I've ever had in my life.

After the lovely Italian lunch, we went to the toy museum.

It was only little, and I was expecting a lot of stuff-I-didn't-recognize, but they had a bunch of trains too so that was all right.

But I got nearly as excited about the freight trains as the passenger ones; my sentimentality about trains knows no limits.

I took this picture thinking I don't know what the Great Dorset Steam Fair might be, but it sounds like I'd like it:

There were dolls and toy kitchen appliances and baby buggies there too, but we of course ignored all that stuff.

We got a bus back and spent a quiet afternoon with TMS on the internet-phone-radio. Helen came home from work, we all went to the pub and then had Lebanese takeaway, which was gorgeous. And an early night, because we're rock-and-roll that way.

Saturday morning we walked to Brighton again, going a different way so that we could look in on Sussex Country Cricket Ground, which we'd seen signs for the previous day and we'd even checked if they had cricket we could go see, but the last match had ended on Wednesday. Still we walked up to it and poked around a bit, took a peek at the grounds through a fence, found an open door and admired some action shots of cricketers and plaques with the names of all the chairmen and captains and England players for the county until someone heard us and told us in the most polite British way to go away, so we did.

On to Brighton, then.

We walked through some markets that seemed half-Camden and half-Longsight to me. There was a shop with a couple of t-shirts I liked, though; one James suggested I get for Andrew that said "Normal People Scare Me" (which would've been true but not at all in the sneering-goth way it was intended by the look of the rest of the shop) and one I wanted for me so much that I'm really sad they only had one in a tiny size.

"It's not about how you look, it's about how you see" seemed particularly apt with me using my still-novel white cane a lot and making tons of comments about how the numbers on buses were easier to see and James noting that I got a lot of double-takes when I walked down the street with my cane in one hand, looking down at my phone in the other. He said he really wanted to stage-whisper at me "You're supposed to be blind!" but didn't because he knows I don't have much of a sense of humor for these things. But we both agreed that's a shame, because it would've been really funny. I worry enough about being thought a scrounger or faker as it is anyway, though, because I use it some-but-not-all the time and because I do stuff (like stare daggers at people who sneak in front of me in queues thinking I won't notice) that "gives away" that I can see at least a little.

We did eventually walk down the pier, either because we hadn't before or because the amusement arcade in it featured toilets we could use; I can't remember which. I didn't take a picture of the almost-life-size plastic cows or the tables with legs that look like cow legs this time, because I was pretty sure I had done that last time, but I couldn't resist a photo of the tin-can-knocking-over game which was decorated with minions.

(For anyone who hasn't seen Despicable Me, this video will illustrate why I wouldn't think you'd want to remind carnival-game players of that movie:


Also, at the end of the pier, there was a wagon with steps leading up to it wherein, apparently, you could get a tarot reading.

Ivor. Ivor the tarot wagon.

I bought overpriced doughnuts because they smelled so good, and we ate them walking back up the pier and watching people in those bungee-jump chairs which I'm always tempted to try, but I didn't think they'd be very good on a day when I was wearing a dress.

I did enjoy Brighton, but I felt a bit out of place, too. It's very white and very middle-class, and I'm...not. I mean, I am white, of course, but I feel uneasy in such overwhelmingly white company. I know Brighton prides itself on its diversity but I also know people who find it frustrating or damaging because they're too far from the white, straight, cis, non-disabled norm: being gay is okay but being anything else seems less so, and heaven help you if you're more than one other thing. I had a nice visit and I'd happily return, especially to the generous and accommodating company of James's sister and her husband, but it did make me appreciate my scruffy, beloved Levenshulme all the more on my return.

Plus, the water doesn't taste like metal here.

Saturday night we had a barbecue: lamb koftas for the others and mushrooms and halloumi and corn on the cob for me. Well, I think they all had all those things too! Then we watched a movie from a set James had picked up in CEX that day. It was called Homecominmg and it was completely amazing. Very funny, in that way that horror movies sometimes are which may or may not be intentional. It's about a thinly-veiled version of the U.S.'s recent wars in Afghanistan/Iraq, full of cynical, bald-faced lying politicians who are shown up when soldiers start coming back from the dead as zombies who want nothing more than to...vote for someone else to be president. I thought I'd seen every possible take on zombies but zombies voting absolutely charmed me. I loved it. And considering how much my horror-loving friends overlap with my politically-involved friends, I think a lot of people I know would like it too.

Then we went to bed early and woke up early and spent most of yesterday traveling back. Getting the trains to and from London via Brighouse was ace -- the Grand Central trains there are cheaper and better than the Virgin trains from Manchester in every conceivable way, except it does mean it's a long day for me if I make the whole journey back at once. But we broke it up a bit with an hour in Brighouse, with a late lunch from the chippy and a nice pint of beer in our favorite pub there, basking in sunshine the likes of which we'd not seen in the last couple of days by the seaside, no doubt an indication again that Yorkshire is God's chosen county.
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Thursday, April 9th, 2015 05:07 pm
Some of my well-meaning friends say stuff like "hit them with your white cane!" as a response when I mention that some fine upstanding citizen has done, like run into the cane and then yell at me, or sneaking ahead of me in queues seems to be a popular one at the moment...).

I appreciate my friends mean well, they're trying to indicate that they think bad things should happen to people who behave in a disgracefully ableist way.

But from my perspective, "Hit them!" is not only impractical as a serious suggestion of course -- for reasons ranging from "it's only made of aluminum" to "I'd be the one who got in trouble" -- but also there are people who genuinely think disabled people who use canes for mobility will also use them as weapons.

No, really.

An eight-year-old had his cane taken from him at school because 'they thought he was getting violent' and the worst of it is, the school gave him a fucking "pool noodle," one of those foam tubes kids use to help them float when they're splashing around in the water, to use instead.

Claiming the kid "posed a danger to himself and others," the school not only took away what the kid's mother calls "his eyes" as punishment, but seemed to think a silly toy was a suitable replacement, clearly intending only to humiliate him (which, if my experience in elementary school is anything to go by, he probably didn't need the help with) and neither knowing or caring that a white cane is a tool and all its ability to convey information -- about where people and objects are, about what kind of surface is being traveled over, so many things -- is in the rigidity that made it seem so threatening in the hands of this eight-year-old.

Also, some blind people had a harrowing time trying to get into Six Flags because security thought their white canes were "sticks" that could start a fight if they ran into someone with one.
After about another half hour, we finally spoke to the man we were waiting for. He brought out paramedics to try to determine if we were blind.

He then asked us if he could give us a sighted guide so we could leave our canes at the gate. We told him no.

He then told us he didn’t want us to have the canes because we might hit people’s legs by accident with them, and it could start a fight. Zach then gave the gentleman his very first travel class. He instructed him and showed him how a blind person would only tap another person’s ankle.

After that, he made us give our solemn word that we would not use our canes as weapons. He then said that "after 9/11, you could never be too careful because terrorists are everywhere."

I replied, “We’re not terrorists.”
I know my friends mean well and I'm not upset at any single example of being told "hit them!" because I know my friends mean nothing more than cheerful solidarity. But I just wanted to say that such comments make me uneasy, and yes it's ridiculous that people do have these reactions -- when disabled people are much more likely to be victims than perpetrators of assault -- but since they do, forgive me for not having much of a sense of humor on the subject.
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Tuesday, April 7th, 2015 11:59 pm
That princess in The Princess and the Pea is definitely autistic, isn't she.
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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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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.