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Friday, May 22nd, 2015 10:57 am
Applying for PIP (Personal Independence Payment, the latest Orwellian name for "the bit of money we might deign to give you if we decide you're sufficiently disabled") is just making a big list of everything you're crap at that most people aren't. And it's just as much fun as that makes it sound like it is.

When I moaned about this to [livejournal.com profile] diffrentcolours just now, he suggested "Maybe you should do a seperate list on the side of things you're awesome at that most people aren't, just for yourself." A marvelous idea!

Unfortunately, in this mindset, anything I might be good at has flown out of my head.

Not that I'm fishing for compliments, but feel free to help cheer me up in comments (which are screened, because I'm not here to brag) if you like.
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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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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.