After only a day or two of this, I already feel I'm well on my way to a Vimes-like knowledge of Manchester based on all the different surfaces I can feel now. This makes me smile.
After only a day or two of this, I already feel I'm well on my way to a Vimes-like knowledge of Manchester based on all the different surfaces I can feel now. This makes me smile.
And it went so much better. Outwardly nothing was that different (though I didn't get told off too much for every slight instance of doing something "wrong," that was about the only overt thing I noticed), but it was generally a much more relaxed and fun session for me and probably for her as well. And I learned some actually useful stuff, like how to look like/be less of an idiot when crossing roads and navigating stairs and other things that I can do but which I actually am interested in learning the "proper" blindie way (or ways) of doing even if I end up ignoring them! Being trusted/allowed to combine sighted and blind people's ways of doing things in the way that works best for me is still my favorite part of pursuing this stuff as an adult, because it was the thing most often missing for me as a kid.
It's still kind of frustrating that this is another hoop to jump through: I can't practice with the long cane between sessions using it because it's thought to require enough specialist training that until you reach a certain level you can't take it home, so as to discourage "bad habits." And this training is clearly tailored for people who are new to sight loss or have been really severely affected by it; today she talked about eventually going into town and practicing on Market Street like it was a huge deal -- and I don't mean to diminish the extent to which crowded chaotic areas like that are a big deal, especially for people who are used to having sight and only just coming to terms with having less/none. I imagine I'd stay in the house a lot too if my sight got worse! But since I'm so used to this...well, after relinquishing the "long cane" in favor of my trusty guide cane, I ended up walking into town, and around the city centre, before I went home today.
I'm an edge case, and I don't expect the training to be tailored to someone fairly-sighted-for-a-blind-person who has decades of coping mechanisms stored up already. But I'll manage, and the stuff I can do well seems pretty recognized now, so that's okay.
When I got home, I found that my prescription swimming goggles had arrived already in the mail, and now I'm excited to go tackle another area of human endeavor with all the useful eyesight I can bring to it!
First, classical music for pre-schoolers! And not just "Twinkle Twinkle Little Star" stuff either; this article uses as an example "Fantasia on a Theme by Thomas Tallis", composed by Ralph Vaughan Williams.
Then, that the animation and soundtrack were specifically designed to be easier for blind/partially-sighted people to follow. I'm really curious to see what this'd be like! Not many things I do see seem created with the likes of me in mind. (Except Mad Max, obvs.) All this about "working with high contrast colours, having centrally focused action, bigger, definite (sometimes exaggerated) movements and holding on certain shots longer [than usual]" sounds really good to me! Plus, it's all audio described as well.
Next, I like...mostly...that
Melody's sight difficulties are never mentioned. "We often see her using her white cane, or placing her hand on top of her mum's whilst they cut something," he says. "It is never about what Melody can't do or needs help with, but always about what she can do and the methods she uses to do as much as most children."I like that it's not assumed people need or are entitled to know/ask what other people's disabilities are, what caused them, or what effects they have on a person. But my own experience makes me a bit wary of focusing on what people can do, just because I'm aware of how much more work it can be to complete the tasks by which we're judged to be keeping up with our peers, and how invisible* that work tends to be anyway. "What we can do" is cute and celebrates independence when we see it in a kid, but once we're of working age it seems to be about how conveniently what-we-can-do can be exploited by potential employers and how little we deserve if we don't or can't work. Or maybe I'm just too grumpy lately. This is a mostly-positive point I was making here, honest.
But actually my favorite thing about this is a quote from the head teacher at an RNIB specialist school, so maybe I shouldn't be surprised he's good at talking about blindness in simple ways but I found this a really powerful sentence on the subject of how much blind people can actually see -- which I guess is a topic of great interest to sighted people...but also one that we often get wrong because we tend to assume that "blind" means "can't see anything at all." But this head teacher says "Many blind people and the majority of partially sighted people can recognise a friend at arm's length."
I just love that. I don't know why, but it makes me really happy. Like "I caught myself randomly remembering this on the bus the other day and that was enough to make me grin" kinds of happy. I like that it's true, of course -- being able to do that also implies a lot of useful stuff that should also be possible -- but, actually, given what I just said about defining people by their usefulness and productivity, I think the thing I love about this turn of phrase is that it's more about a benefit to the blind person themselves than it is about their usefulness to the rest of the world. The accomplishment of recognizing a friend will not get you a job or anything, it will just make you happy. This is a great metric, having friends within arm's length.
* I tried hard to think of another way to express this because I attempt to keep metaphors equating sight with knowledge or concern and lack of sight with not knowing or not caring, but I'm so used to "visibility" in the context of both bisexual activism (where the main antidote to erasure and other forms of biphobia is visibility, to the extent that our celebration day every year is called "Bi Visibility Day") and disability activism (where much vital work is done contrasting visible and invisible disabilities/conditions as well as the spoons it's easy to see someone's expending, like trying to climb a flight of stairs or push themselves in a wheelchair, versus the less obvious drains on energy like struggling with cognitive demands or pain that is not obvious to the external world. Because of these invisible struggles and the struggles against invisibility, I know of no better word for what I'm talking about here. And I'm not saying it's a bad or offensive use of the word, just that it goes against my usual aims of trying not to talk about sight good blind bad (which of course also ties into connotations of light and darkness and can get pretty racist too).
But the thing I like about Depict, this new tool, is that by it's very nature it involves sighted people in the plight of blind people using the Internet. It's especially awesome that this is calling attention to the problem not just in a "pity the poor suffering people" way but in a "and here's how you can help fix the problem." Crowdsourcing good image descriptions is such a great way of dealing with one of the internet's problems.
One thing about this interview that made me laugh, though:
Google, Samsung, and one other group in Montreal, are doing a lot of research on getting computers to give accurate descriptions of images online....I was trying out one these tools and I plugged in a close-up image of a spider in a web and the description that I got back was a ‘Man on a tightrope.’Computers are terrible at identifying images. This is how we get captchas that are actually somewhat accessible to me! I can't do the sort of "traditional" ones where words are distorted and lots of "noise" is introduced into the images, so I love that a few I've seen lately are like "is this a picture of a goat or a dog?" or asking me to type what I see in a photo of a house number. So I'm glad computers still think a spider is a man on a tightrope and hope they don't get better too quickly, because god knows what I'll have to do next to "prove I am a human" when I want to sign up for something or leave a comment.
The "rehabilitation officer" from the council rang me yesterday morning. "I'm worried about you, darlin'!" she said. I had a couple of voicemails from her the previous week that I hadn't even bothered listening to once I knew they were from her, which I know is naughty, but once I was in the pub and once I was helping move house, and I'm still in a state where doing even one thing at a time takes concerted effort.
I went for my first training session before I went to Minnesota. I'd been looking forward to this because I was sure I was missing stuff in the fake-it-til-you-make-it tactic I've been taking since I got the thing in April. But when I turned up, I felt like a bait-and-switch had been pulled on me because I was again heavily pressured into trying the "long cane" and not the "guide cane" I have been using. My general agreeableness and some curiosity about the difference between the two kinds led me to have a session with the long cane.
I found it interesting and perfectly okay at the time, but the more I thought about it once I left, the more I found myself unsettled and dismayed by it.
The long cane is intended to give a much richer "view" of the world. Its user taps or rolls it from side to side along the ground as they walk (under normal circumstances; wheelchair users can use them too and there are weight-bearing walking-stick canes for people who need to use a walking stick as well). The pendulum-like movement of the cane therefore has to co-ordinate with the person's steps: it should reach its furthest point right when you take a step with your left foot, and vice versa. This can be surprisingly difficult and tiring at first, especially as the cane is meant to be "centered" at the middle of your body, held near your belly button, and it's too easy for whatever hand you're holding it with to get tired and drop down to your side. This is bad because it means your movement of the cane no longer sweeps all of the area it needs to -- which is the width of your body plus a little more each side so you know if you're right near curbs, walls, people, cars, or other obstacles.
When she'd first assessed me and talked about the canes, the lady was pushing "long cane" at me pretty heavily. If it was a real business, she'd have been upselling. So I wasn't too surprised when I got there and she's like, "Well, you don't need any guide cane training because -- you got here, didn't you?" I boggled at that: I've gotten all kinds of places, even from one continent to another, without any cane at all for my whole life until the past three months, but that doesn't mean I'm doing so in the best possible way! This "logic" was one of the few things I was annoyed about at the time, instead of just in retrospect.
Another thing, which will become relevant in a minute: the canes have different tips, too. Cane users (and this goes for guide as well as long cane) can tap or roll their canes side to side along in front of them. My guide cane happens to have a "pencil" tip, the kind for tapping (I don't know why it's called that; it's not pointy -- indeed I was instructed not to drag it on the ground because that would make the tip pointy and thus both ineffective and potentially dangerous), it's just a smooth plastic cylinder the same width as the rest of the cane, with a rounded end. The other kind of tip is called a "roller" tip, which is also white plastic but bigger and rounder -- maybe roughly the size of a tennis ball, though not quite that spherical -- and as the name implies is for rolling across the ground instead of just tapping to the extreme right and left points of the pendulum swing, lifted slightly off the ground all the rest of the time.
So I went slowly up and down a corridor until I could do this in practice as well as understand it in theory; for maybe twenty minutes or so. Then we went outside. Outside was more tricky immediately because the terrain was more uneven so --
So because I'm used to a pencil-tipped cane, and because I use my guide cane differently from a long cane -- I generally hold it still in front of me, tip near but not on the ground near the middle of where I'm walking -- this meant the roller tip took at least as much getting used to as the techniques for the long cane itself. I tried the pencil tip first in my long cane training session but preferred the roller tip, for the more complex information it gave me about what I was encountering and because it seemed more work than paying attention to how my wrist had to move to get a useful but not too violent tap or to pick it up off the ground in between sufficiently that it doesn't roll across the floor but also not too high that it's awkward or unnecessarily difficult for me to lift. Because your steps match the movements of the cane, how fast you can walk is dependent on how fast you can whip the thing back and forth in front of you without getting it tangled up in your feet and kicking it or tripping yourself or doing something else alarming; walking at what felt like a normal pace (though nothing feels normal when you're overthinking it like this) gave me enough to think about, so I was happier with the roller tip that could just rest on the ground.
The downsides of the roller tip became more evident as soon as we got outside. Sometimes the tip would get hung up on some bit of the unevenness, and then either it'd stay stuck and I'd impale my belly on it which would usually eventually cause the tip to spring up out of whatever crack or divot it'd gotten stuck in, or else the tip would jump up with the effort I was putting into shoving it across the ground in front of me. Both of these would immediately get me told off "Don't lift it!" by my ever so helpful instructor. Who was walking behind me, so I couldn't flag up how these problems seemed to me, or ask questions, or anything, without stopping and turning around, which usually got me told off for stopping when I should just keep going, or something.
I don't take criticism fantastically well at the best of times, but I thought that continuing to chastise me every time she thought the tip of the cane left contact with the ground was a bit much after a while. It's hard learning a new thing, being bad at it (especially out in public). There is a point in learning a new skill where you're intellectually aware of what you should be doing but you haven't yet had enough practice to do it reliably all the time, and at that point it stops becoming useful to point out the mistake every time it happens. I found it unspeakably frustrating, especially because I was struggling with the nuance of "using enough force to keep the cane moving at the rate you're supposed to be walking" and "not using so much force that the tip flies up in the air."
Especially because she didn't seem to like me walking slowly. "You walk fast, you're naturally a fast walker," she kept saying, which I don't even think I believe and I was irritated that she was basing this on having seen me once walk toward her office when I was worried about getting there before it closed so of course I was walking fast then! But during this lesson it was just something else to be irritated about, because it surely made sense to practice all this new stuff at a slower speed (though, obviously, moving the cane too slowly would also leave it prone to sticking in all the dips and holes in the pavement...).
I don't know how much this not-getting-a-say-in-the-narratives-abou
What I was supposed to do seemed kind of inconsistent, too. Praised for "avoiding the obstacle" of other people standing in the corridor, I was then accused of "veering" and staying too close to buildings when we were outside. My arm did brush up against a fence that was cordoning off some construction work at one point (all of Manchester seems to be under construction at the moment!), but that was because the space left for pedestrians to walk was really only wide enough for people to go comfortably in one direction at a time but since it's a busy area there were always people fighting past each other in both directions. Asked if I usually stick close to buildings, I honestly didn't think so, but in busy areas like this (on and near Oxford Road by the precinct centre and the aquatics centre and that), most pedestrians tend toward one side of the pavement or another as people walk the opposite way past them. It wasn't as if I was crashing into buildings or anything, just vaguely tending to that side of the pavement, which I guess is a habit I've probably developed so that I'm not going to step off a curb if I encounter someone walking the other way past me? I don't know; I've never examined my reasons for doing this. I'm not even sure how much of a pattern it is. Some of it comes from the fact that magister prefers to walk on the traffic side of any pavement so he can hear conversation better; I've noticed my habit of arranging myself accordingly does tend to bleed over to other people I'm walking next to these days and I really don't think that is a big deal.
But in the eyes of my "mobility instructor," this ticks a box called Veering. So I was told to walk right down the middle of the pavement, to expect other people to get out of my way. My experience had already taught me that while most people do indeed leap out of the way, yank their less-observant companions out of my way (to the point where I sometimes find myself missing the odd exchange of hellos or smiles I used to get with strangers in the street!), some people are so very not going to get out of my way. I get the theory that I'm as deserving of my space in the world as anyone else is (and that walking right down the middle is probably best-practice for people less sighted than me), but I'm really uncomfortable with feeling that I'm making an unnecessary nuisance of myself above and beyond that.
I was also told not to apologize, which again I can see the theoretical point of in being assertive and confident that I am worth the space I take up...but in practice I both come from and live in cultures where people apologize for everything, including other people bumping into them...it'd be a very hard habit for me to break, even trying to break it would skyrocket my anxiety, and my apologies don't mean that I feel I'm any less entitled to my bit of space. So yeah: not apologizing just ain't gonna happen. And that doesn't bother me.
Of course the most annoying thing about all of this is that I've seen a lot of people use these "long" canes, since childhood. Yes never for very long and yes only in certain types of situations, but. I've almost always seen them being used pretty similarly to how I use mine: drifting along in front of the feet in spaces we expect to be relatively free of obstacles (like walking down the aisle of a bus, or along a train platform). I am not saying the synchronized tapping and whatnot doesn't have its uses, but my impression is that it's like driving lessons/tests, versus how you drive after that. You have to do everything ultra-correctly for a while, with just the right amount of rolling and to just the right distance either side of your body with the cane at just the right length from your belly...and then once you pass the "test" and get to keep the cane (unlike the guide cane, I couldn't take that one away with me; this is a matter of policy to keep people from learning "bad habits" apparently), you can do what actually works for you.
It is the nature of my anxiety to second-guess pretty much every decision I make, especially for myself, so I could devil's-advocate myself into the whole "you shouldn't give up on things just because they're not fun or you're not good at them or they're not being taught in the way you'd find most perfect..." line of thinking, but I really don't think I am giving up too easily on this. I really think that the benefits of the long cane for me are nebulous and not worth the stress.
She told me at the end of the session, which was just before I was about to be away for the next two Tuesdays, that I should think about whether I wanted to continue the long cane training and let her know when I got back if I did, and not to worry about getting in touch right now if I didn't. So I had my horrible holiday and by the time I came back I was sure I didn't want to bother with this, not right now at least. And life got busy and I didn't worry about not being in touch since that's what she'd told me would indicate to her that I wasn't interested. But then I had a couple of voicemails from her last week, which I basically ignored -- one was when I was helping friends move house and was tired and covered in sweat, the other was when I was in a pub and actually having a nice time -- but then she me yesterday. This time I actually answered the phone (not having maliciously avoided it before, just not having noticed it when she called) and she told me she was worried about me because I hadn't gotten back to her. Then she asked me if I still wanted the long cane training and I was all ready to say no when she added "...or do you want the guide cane training?" I was so surprised at that I said the guide cane would be good. I hadn't expected this to be an option; I guess she's forgotten about telling me I didn't need any.
But then today I woke up late and didn't want to rush to turn up late (she'd probably think I was an Olympic sprinter if I turned up in a hurry agaiun...) and the weather was awful and I know I should have called her but I am in fact a rubbish human being so just couldn't. And now I have another voicemail from her that I'm ignoring. Nnrgh.
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.
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!
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, miss_s_b, 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 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.
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.
I can't remember the last time I saw an action movie where I never ONCE lost track of the action. Whole scenes in AoU were just lively blurs— DAVESEID (@davidwynne) May 22, 2015
But Fury Road is one of the most action-packed films I've ever seen and it's completely crystal clear what's happening all the way through.— DAVESEID (@davidwynne) May 22, 2015
Having read those tweets a week or so ago, I was even more excited about 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 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.
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 (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.
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.
Having told 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.
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 diffrentcolours remind me to eat, going back to 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 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.
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.
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.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.
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.”
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.
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.
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."
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.
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.
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.
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 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.
rosamicula asked last night if Andrew or I wanted a free ticket to The Curious Incident of the Dog in the Night-Time and I think we both agreed that I'd be better suited to it, and indeed I think Andrew would've struggled with Wagamama and red wine and socializing...though
Jane's friend's boyfriend turned out to be Vegan Chris from diffrentcolours's old/Andrew's current work. Jane was astounded when I sat down at the table and one of the first things I said was "I think I made you a chocolate cake when you fixed my laptop!" to him. This has convinced her still further that Andrew is the center of the universe, which he finds hilarious because he doesn't know anyone more antisocial than he is (but then, he wouldn't, would he).
I was a bit wary of the play, having agreed to go along mainly because I wanted to see Jane and it was free, because most depictions of autism are so awful and so far from my understanding or experience of it (limited though both of those things are, naturally). Admittedly, as Jane said afterward, "autism" is never used in the book or play, but the main character's distinguishing characteristics -- not wanting to be touched, being a smart kid at a "special school," remembering precise details, and "shutting down" when overwhelmed in ways that embarrass, anger or concern others --tick all the boxes. And Andrew said the Lowry, where it was on, are inviting autistic kids to performances and doing workshops with them for the duration of the play's time here, so clearly they see some connection with autism and it.
The acting -- particularly from the guy playing Christopher who was on stage the entire time, with a ton of lines to remember (including long lists of numbers and so on), extended semi-verbal meltdowns, even the solution to a geometry problem after the curtain call -- was great, but the setting and effects really made the production. When we sat down, Jane described the set, a huge black background with lit-up white lines dividing it into a big grid like giant graph paper as "a Blondie album cover, or something out of Doctor Who" (it reminded me of Tron, personally) but as the play went on many things were projected onto this huge graph paper: constellations, the outlines of the houses in Christopher's neighborhood, a map of train routes into London, and even Christopher's moments of sensory overload and then the prime numbers whose recitation he used to soothe himself.
I found the sensory-overload depictions (noises and flashing lights that overwhelmed even the neurotypical brains, as Christopher writhed and screamed on stage) particularly compelling and effective, especially that of Paddington station where Christopher first reached London. I had to smile a little at it being Paddington because my only association with that station (a certain bear from darkest Peru nonwithstanding) is being there with my parents, who found particularly the tube to be as upsetting and overwhelming as Christopher did in the play. And I do have a lot of sympathy: I'm not autistic but I'm apparently a couple of standard deviations away from truly neurotypical, thanks I suspect to my anxiety disorder, visual impairment, and living in a culture other than the one in which I grew up) I experience a not-dissimilar overload in noisy, unfamiliar places crowded with people and things to look at.
I remember Andrew telling me when, after reading questions out to him from an autism diagnosis test on the internet, that a lot of them would leave me scoring highly too, but because of my vision rather than my neurology, that this overlap in symptoms often makes it difficult to diagnose autism in blind people: we all struggle in unfamiliar places, fail to interpret body language or facial expressions (I can't remember if I wrote about this here but once Andrew asked me out of the blue "What is eye contact anyway? Is it just staring at someone's eyes for a long time?" and I replied that I'm probably the worst person out of all the people he knows to answer that and I've been told all my life I'm bad at it (even if I am looking at someone, it doesn't look to them like I am) and he ended up saying "I'm going to Wikipedia it!").
The use of very loud noises and bright flashing or running lights (the grid had LEDs at each vortex that could change color, which led to some dizzying effects) did a good job of expressing for us neurotypicals what "normal" sounds, textures and lighting can seem like to people on the... as did overlapping disjointed images and sounds, particularly of speech. Christopher's possibly-irrational-seeming behavior at times made a lot more sense when the world was shown as it appeared to him: how could anyone do anything but scream and flail with all this going on all the time? I must admit the intensity of noise and light did my sinus headache no good at all! But still, I appreciated what it was attempting to convey.
The one incident during this particular night-time that stands out to me is that while, like a good theatre-goer, I turned my phone onto silent before the performance began. I don't normally get notifications for anything but texts and calls anyway, but I've set my phone up so e-mails from Andrew (which I basically treat like texts since he won't use a mobile phone) will make it vibrate. So when I felt the ankle next to my handbag buzz, I half-pulled it out of its little pocket to sneak the quickest look at my phone. I know phones are taboo at things like this but he's autistic and I'm basically his carer and I take both of those things seriously. I had barely time to process the subject line of his e-mail (which luckily told me all I needed to know) before a man sitting two seats away from me reached over his companion to grab my left arm hard enough to snap my head toward him in alarm as I dropped my phone back into its pocket in my bag. He made some kind of gesture at me that disappointed my contrary nature because having inadvertently already done the thing he wanted me to do -- put my phone away -- I wasn't able to defy him.
But that irony, being shamed for checking up on my autistic husband during a play about an autistic kid, left a lingering bitterness that I hope made him glad that whoever he was with was sitting between him and me or he'd have gotten an earful on the subject!