hollymath: drawing in black of owl wearing big red glasses.Words on its belly:"it's not about how you look, it's about how you see" (Default)
I saw Notes on Blindness on Saturday evening as part of the National Media Museum's Widescreen Weekend. Unusually for me, I was by myself since Andrew was too sick to go with me like we'd planned. (Irony of ironies, for a movie about bilndness, the house lights weren't up enough for me to find my seat when I got into Pictureville Cinema, even though I was early and there was a panel discussion before the movie so no reason for it to be so dark. And this was the one time I didn't have Andrew with me to be my seeing-eye human. Luckily a woman who was already helping the mobility-impaired person she was with spotted me and helped me find where I needed to be.)

It's definitely one I'm going to have to watch again (got the DVD on my wishlist already!) but for now I just wanted to remind myself, and tell you guys, of one of the things I found most striking about seeing it in the cinema with a lot of other people (most of whom had the lanyard of weekend-pass festivalgoers and were the kind of people I'm used to seeing at the Media Museum's cinematic events: mostly older, almost all white, chattering about things like what materials different kinds of cinema screens are made of in between movies).

The movie's based on the non-fictional audiotapes of a man, John Hull, a middle-aged academic whose second child was just about to be born, who lost his sight in the early 80s. He started keeping a sort of diary on cassettes as he came to terms with his blindness, and the movie's audio is composed of these recordings, lip-synced by actors but the actual voices are that of John and his wife and other family members on the tapes.

It's very well done -- I really like the way it's filmed so that even after John loses the last of his sight the cinematography makes you feel like you're getting things from his perspective even though there are of course images on the screen throughout the movie. I know I'll have a lot to say about it, but I think I need to see it again before I do (ideally with the audio description, which I don't think the media museum has? or anyway a combination of their staff being kind but not overly well-trained and me being all anxious and brainweasely meant I didn't ask).

In the meantime there's one little anecdote I wanted to tell.

Early in the movie, John has a little sight. He is as anyone would be upset when he learns he will lose that too. "How will I lecture?" he says (all of this is paraphrased from what I can remember!) "How will I read?" He seems to consult a library, whose audiobook collection is all detective-stories and romance. Then he's on the phone to someone asking about this, explaining the contemporary social texts he needs for his work and clearly not getting answers he wants.

Finally he asks in frustration, "How do blind people read big books?"

I had time to smile at the child-like nature of that phrase, "big books" and to mutter out loud, "they don't" before the answer came from the other side of his phone call.

"They don't."

And I was already smiling in that half-recognition, half-rueful, half-I-might-cry (yes that's three halves, yes this is a movie that gave me All The Feels, as the kids say) kind of way before the rest of the audience responded.

They laughed. They chuckled anyway. It didn't sound mean, it sounded more surprised -- which of course was the last thing I was -- and that actually surprised me. Maybe I expected the skewing-older audience of mostly-vintage movies (this was introduced as the one "contemporary" title in the festival) to be a little more sympathetic to sight loss since as people age they are more likely to find it among their peer group if not themselves. Of course things are better to some extent now (though the RNIB library I subscribe to doesn't have the "social history" I really like, but it's keeping me in science-fiction and horror so I think there's still more truth to this than people expect!) but still.

Maybe because I was "blind," albeit as a tiny child, at this time that I remember it. Maybe I recognize this in everything from other kids at the summer camp for blind kids to the steering group I'm leading after the first meeting I attended of it because no one else was going to write the e-mails and make the phone calls that didn't seem like a big deal to me. There's a institutionalization endemic to some kinds of blind people, this sense that they're easiest for sighted people to deal with when they don't do much and that they find it easier not to fight all the time to make things accessible. Stay at home, wait for people to take you places if you must go, listen to some nice cozy mystery from the library.

This part of the story has a happy ending -- John gets people to read books onto cassettes for him, he learns to make audio notes for his teaching, he recognizes his students by voice, all that -- but man. I didn't like being surrounded by people who were laughing at his plight. (And I hope that would've been true even if it weren't to some extent mine as well.)

I wonder what made them laugh. I really do.
hollymath: drawing in black of owl wearing big red glasses.Words on its belly:"it's not about how you look, it's about how you see" (Default)
In the really interesting comments to a really interesting link, [personal profile] jesse_the_k asked me if starting to use a white cane has made crossing the street different. My answer included a story from Thursday that I've been meaning to blog about anyway, so I'll just copy the whole thing here.

Definitely. In tons of ways. Sometimes cars will stop and I'm pretty sure they are indicating for me to cross. But if I'm not really sure, I won't do it. I can't tell if they're waiting for me, another car, or just a light that's about to change and I'll always choose waiting, feeling awkward, and maybe annoying them over any chance of getting run over!

Lots of times other pedestrians waiting to cross too will tell me when they think it's safe/when they start to cross the road themselves, even though I'll almost always wait for the green man. At least one man (middle-aged, white, northern English) sort of bullied me across the road with him when I was waiting at an intersection where I knew the lights take a long time to cycle through. He wasn't accepting my polite refusals of crossing the road when he did, and I ended up having to do so just because I didn't want him to grab me and push me along with him like it looked he was about to, in the name of jocular helpfulness that can be so nice in some contexts and makes me happy to live in a northern English culture, but the downside is there's no effective way to refuse that "help" sometimes.

Another anecdote about "help": The other day I was waiting at an intersection in the middle of town, and saw someone next to me cross the road while I'd pushed the button for the green man but was still waiting by the red one, with my fingers on the spinny cone. Then she walked back across the road to me again. I thought she must be a very confused person. And, oh no, she was heading towards me. I braced myself to have to give directions or something (I was struggling across the city centre with a suitcase and had a lot on my mind, so didn't have a lot of physical or mental energy at this point).

But she just got right up in my face (blind people don't need personal space, right? we must not; she's hardly the first person to do this) and said "there's no beep." Now I was confused.

I forgot that sighted people seem to think blind people can only know when to cross roads if there's an audible beep to go along with the green man. Blind people know that this isn't going to happen where I was (about to cross a bus lane, with tram lines behind me and a busy road to my left) because it wouldn't be clear which crossing the beep was indicating it'd be safe to cross! And there needs to be a tactile indicator anyway, for people with both sight and hearing loss. And I never pay any attention to which crossings beep or not anyway, I couldn't keep track.

I said "I know!" before I could temper by surprise into something less rude, and then added "it's okay" because I didn't want any more "help." So she went back across the road, and I waited because the man was still red (and I know she'd safely crossed this road three times in the time I'd been waiting, but I was crossing a bus lane, and when I'm not hugely impatient I'm more than happy to wait for my green man!), probably thinking she'd done her good deed by helping a poor disabled lady, even though the disabled lady was also stupid or something because she didn't take advantage of the help.
hollymath: drawing in black of owl wearing big red glasses.Words on its belly:"it's not about how you look, it's about how you see" (Default)
Today is an exciting day.

So you may remember I went to see Ghostbusters with Andrew at the AMC in Manchester and a projectionist told us they don't do audio description because no one ever asks for it. We complained and got a couple of free tickets and vague platitudes about how Andrew shouldn't have been told that and the manager would look into it -- which weren't as reassuring as they might have been since while I'm sure from her perspective the projectionist shouldn't have said that, this would be because it makes the cinema look bad rather than because it wasn't true. And a manager not knowing anything about audio description -- I'm not expecting technical mastery but I shouldn't know more about what to expect than a cinema manager does.

Anyway, we used one of the free tickets when Debi was here, to go see Finding Dory; Andrew had had a rough day and wanted a treat, something nice to do while our guest was here. It was a choice between that or Star Trek, both of which I'd already seen (with audio description, in Bradford Cineworld) so I figured the AD wouldn't work and I didn't care too much.

But of course, we were sure as hell going to try.

Our request for audio description headphones confused the person we first asked (behind the food counter, so understandably this is really not her area) to the point of seeming to terrify her. Much walkie-talkieing ensued. More than once we were asked which film we were seeing. Eventually three people and a clipboard came to tell us "it wasn't advertised with audio description in 2D. It was in 3D." Which made me laugh: surely I can't be the only person who can't watch 3D movies for the same reason I need the audio description: that I'm visually impaired! Andrew started ranting about it didn't have to be advertised with audio description, because it was a legal requirement etc. etc....but I dragged him away because it wasn't worth making a fuss and we'd hardly paid anything for this anyway and I'd already seen it and let's just go sit down. So we did.

But honestly, once we did, I surprised myself by how upset I was. The movie still hadn't started yet, and I started tweeting.

I found myself on the verge of tears again, which I hadn't expected. This wasn't a much-anticipated moviegoing experience like it'd been the previous time. I wasn't told "we don't bother because no one asks" this time. But it turns out that it was almost as bad to be talked to like it was my fault that I didn't know to buy tickets for the 3D movie -- as if I would have, anyway! -- rather than the cinema's fault for not providing audio description as a mater of course, which other chains and even independents like HOME manage perfectly fine (HOME have been great about this; I went to something when it first opened where the AD didn't work due to a technical fault and I felt like I ended up being sympathetic to them about it; the guy we spoke to was like "no, this is not acceptable and I'm really sorry"...so I know how much better this could be dealt with!).

So this time, when we got back home, Debi messaged AMC on Facebook about it, Andrew addressed them in tweets, on tumblr, and in a blog post.

Debi got a reply, which started
We are very sorry that we couldn’t accommodate you and your family during a recent visit to our cinema. At this present time we have audio description capability in four screens. Film titles and formats rotate around our screens on various days through the week. This is sometimes a combination of 3D and 2D product as this cinema only has the capability to play 3D in four of our available screens.
Which is interesting for several reasons, firstly of which is the amusement inherent in the kind of family Debi and Andrew and I would make. But also because it was more information than we were given either time this actually happened to us by the staff at the cinema. This message also offered to show us ("you and your family", aww) a 2D screening of Finding Dory with the audio description for free whenever we wanted. Debi didn't bother replying at first, which I agreed with as it still seemed a bit point-missing, still treating this like an isolated customer service problem rather than a systemic issue that visually impaired people (and people with other sensory processing issues who might benefit from audio description; I don't think it's just us!).

I think Andrew got a reply to his tweets too, asking him to take it to DMs, but he wasn't interested in anything that wasn't public. I got the same request, and decided what the hell, I'll play along. I'm glad I did.

The first message I got was this:
Thank you for following back. We are very sorry and would like to apologise about your recent visit and we assure you we are working hard improve our levels of service and accessibility. Firstly, we would like to offer a free screening for you, your friends and family. You can choose the film and we will put everything in place for you.

We can also confirm that we have employed a specialist contractor who will begin installing audio description equipment across all our screens from next week. As this process takes place we would like to invite you to test our systems for free and offer advice to our team here at the cinema in Manchester.
That...seems a bit of a result to me, if I'm honest! I really wasn't expecting much more than a polite telling off (about how they weren't doing anything illegal, I shouldn't expect better, etc) and maybe a couple more freebies that I'm not interested in being thrown our way. (We still have a free ticket from last time; the plan has always been that Andrew would go and use those on his own when he wants to see things I don't.)

Of course immediately "a film of your choice" caught our interest. Debi wanted to know if they had the 1979 Mad Max and we all laughed -- she'd gone to great lengths to watch it before she saw Mad Max 2 at a festival that weekend, and it hadn't worked out, so that would have been kind of hilarious. Of course I suggested what my friends always suggest when a cinema's looking for movie selections: Horror Express! Which [personal profile] miss_s_b was pretty excited about.

But in the realms of "movies they actually would have, and audio description" (other than Debi telling me when people should kiss, which she was happy to offer), there was an obvious choice.

We're gonna go see Ghostbusters. Some of us for the first time, some of us for the fourth at least. I'm so excited. It's gonna be awesome.

And it's gonna be tonight!

I wanted it to be when Debi was still up north, having spent last weekend with us she's in Brighouse this week (and handily willing to drive Team Brighouse over to Manchester for it). Since she's part of our family, and all! And since she, along with Andrew, both complained and helped encourage me to complain about this when I just did not have the energy or heart to do so myself, I wanted her to get the reward too.

And then I just messaged a bunch of my friends saying "who wants to see Ghostbusters for free on Friday" and of course they all do (poor Katie has to work, which is sad, but I don't think anyone else turned the offer down so there's gonna be like fifteen of us!). I'm so excited. Glad I can offer something cool and unusual for my friends, even as I'd gladly swap it for being able to go to the cinema without a fuss like most people can.

And on that subject, I'm at least as excited about the other part of AMC's offer -- first, that they're suddenly getting audio description kitted out in all of their screens (I asked Andrew if there's any chance this is a coincidence or if we've actually made them do this by complaining; I think both are pretty unlikely really but he reckons we've made them do i. Which is a pretty awesome kind of power to have just for complaining about something on the internet!) and that they want me to "test it and advise them."

Which means more free movies, which is fine with me, but also I'm genuinely excited about the "advise" part; more often than not when I'm out anywhere in public I end up with thoughts on how things could or should be better, and usually have no better outlet for them than grumbling to my friends about it. Being able to actually tell someone how something is working and if it could be better, and to have any hope of actually being listened to, is amazing. These days, if I could have a dream job, that'd be it. All I know about that for now is "once the equipment is up and running, [AMC social-media guy] will be in touch, with more information on how you can be involved with this." So I'll see what if anything that leads to.

But in the meantime, we're gonna get Holtzmanned.
hollymath: drawing in black of owl wearing big red glasses.Words on its belly:"it's not about how you look, it's about how you see" (Default)
So today as always there was a problem with the audio-description headset I always try to get now at the cinema.

I'm used to this. More often than not, they don't work. I'm okay with most movies anyway -- I mean, I went to them for the first 33 or so years of my life without even suspecting such a thing could exist -- but action-y kind of movies are the hardest for me to follow and, being the last person in the world to see it, I'd heard so many good things about Ghostbusters that I wanted to get all the goodness out of it that my sighted friends had so enjoyed.

We'd already elicited confused looks from the ticket seller and the ticket checker at the AMC Great Northern when we asked about audio description, but along with his hot dog and ice cream and Coke, Andrew came back from the concession stand with headphones for me.

"Is it working?" he whispered at me as the film companies' logos came on the screen at the beginning. He too is used to it not working -- and doing the legwork for it, bless him. He gets in for free with my CEA card and he takes his responsibilities as my carer in this situation very seriously. Plus he'd already seen Ghostbusters on his own (twice!) so I didn't feel bad about sending him out when it transpired that I'd been given the headset which just replicates the film soundtrack, which helps some hard-of-hearing people, rather than the audio description I benefit from as a sight-impaired person.

When he sat back down next to me, he said the projectionist he'd spoken to had said, upon realizing what I wanted, "oh, we don't bother with that, no one ever asks for it."


No one.

I'm having a tough time lately: even the smallest decisions to be made or smallest changes to plans have left me absolutely frozen. I'd been unable to cope with a rail replacement bus, or choose a drink from the options at a small shop, in the last couple of hours. You get the idea.

So having just sat through the first scene of the movie, which I hadn't been able to follow (if Andrew hadn't told me what happened in it, because we were running a bit late and weren't sure if we'd miss it, I wouldn't have had any idea what was happening because I wouldn't have known what to watch out for) thus leaving me eagerly looking forward to my audio description to make the rest of the movie an easier, richer experience for me: even when I can follow movies, it takes a lot more energy than getting the help of AD, and as I believe I mentioned I'm pretty low on energy lately!)

And now I wasn't going to get it. Because they can't be bothered. Because no one asks.

I was upset. And then I was angry. And then I couldn't decide which I was more of. I wanted to get out of there; I was feeling ill at the thought of coping with a couple of hours of this. I wanted to find someone to shout at. I wanted to kick things.

I ended up in tears. Quiet ones, but Andrew still noticed and offered sympathetic squeezes. I sat tensed up in a little ball, arms protectively crossed in front of me.

I didn't shout at anyone or kick anything. I'd paid for this and I'd been so looking forward to Ghostbusters. It wasn't one of those times when I've gone along to something I'm indifferent to because someone else is excited about it or just something to pass the time. I'd already felt left out because most of my friends had seen it, and everyone had wanted to talk about it. I'd listened to and read all their words, but I didn't feel I could join in.

And now I still couldn't feel like I was joining in properly.

Because they couldn't be bothered.

It was a long time before I unfolded my arms, before I could smile -- much less laugh -- at the jokes. I did laugh and I did enjoy it, but that's a sign of how great the movie really is as far as I'm concerned. Even when I'd relaxed a little, I felt a little ill and anxious to be out of the cinema, so the whole movie seemed tainted for me. Anything less good might've been ruined entirely. I was already convinced I'd have to go back -- not just to see it again like some friends have done, but to feel like I'd seen it at all.

We don't bother. No one asks.

Yet I'd asked. How was I supposed to process such an answer?

We didn't stay for the post-credits scene. Much as I'd enjoyed myself, I was desperate to get out of there. We talked to a manager, who gave us a couple of free tickets and vouchers for popcorn, but what good is that to a cinema I can't trust to bother with the likes of me? The manager assured us this problem had been mentioned to the techie people, but I have no means of knowing how, if or when it will lead to proper implementation of their obligation to provide available disability accommodation. She'd told us the projectionist Andrew spoke to was new and he shouldn't have said what he did. While I agreed that it wasn't a professional answer, I was quietly almost grateful for that because it revealed something I was sure this manager would rather we didn't know: how people really think. How they act when they don't think anyone notices. It's far more useful in getting an understanding of the extent and nature of a problem than a carefully-worded, "correct" response full of the right words to cover a company's asses.

Andrew and I came back home and tweeted about it. His tweet thread starts here and mine here. Andrew, who tagged AMC in some of his tweets, of course got a reply from them asking him to take it to private messages, but he wasn't interested.

We're both less interested in calling out the particular cinema than we are in calling attention to this, to how much more audio description could be used and appreciated than it is -- as I say there, I didn't even know it was a thing I could ask for until about a year ago, and I'm sure that's true for plenty more people who would benefit from it, too (especially because lots of sight loss is gradual and sort of "under the radar" because people are uncomfortable thinking of themselves as partially sighted or don't know that these resources would benefit them...the way that I used to think things were for "proper" blind people and not for me. Subtitles and other adjustments for d/Deaf and hard-of-hearing people are poorly-enough implemented, appreciated, and recognized as useful or just a thing that exists, but audio description lags way behind even that.

This is what I mean about the social model of disability. It might sound crazy but it isn't my lack of sight that disables me. I could imagine a world that worked in such a way that I would find it as more or less as easy as any sighted person to get around safely, to get and keep work, to read books and watch films and use technology and cook and do everything anybody else does.

What stops me from feeling that I'm living life on the same basis as anyone else isn't anything inherent about my eye condition or my usable sight: it's the way society is set up. It's the broken pavements, the unwillingness of bus drivers to stop when someone with a white cane is at a stop, the prizing of "design" over blind-friendliness in the built environment, the unspoken notion in recruiters' heads that there's always someone easier to give the job to, the muggers who picked the registered-blind man to beat up and mug near my house the other day rather than anybody else they encountered on the street, no doubt thinking he's an easy target (I found out about that from Facebook which, hearteningly, has rallied round to get his locks changed for free so that he doesn't have to worry about his stolen keys being used to let baddies into his house, and offered all kinds of sympathy and support).

It's cinema projectionists not bothering with audio description when it's as readily available to them as the loop they do implement for people with hearing loss. And it's them blaming this on the sight-impaired members of their audience or potential audience for "not asking."

It's also any possible response to this that goes anything like "well, who cares, no one's ever died from not being able to see a movie." The idea that fun or frivolous things are only for the abled people who find them easiest to access is also ableist. People seem surprised that disabled people want to do anything other than the appointments and tasks they need to manage their condition: there's a lot of antagonism to disabled people wanting to attend concerts or sports events, going to clubs or bars...even having sex is often treated as a luxury that can't involve any allowances or adjustments just so disabled people can do it -- why should they want to anyway? If leisure and hobbies and yes even sexuality are as crucial to life as abled people think they are (and they are!), they should be just as important to disabled people. Disabled life shouldn't just be about getting to medical appointments and surviving on the most meager crumbs of life. It should be Pokemon Go and Ghostbusters and whatever else our families, friends or colleagues are talking about.

James, bless him, read my tweets and told me that the Bradford Cineworld is showing Ghostbusters with audio description (like I said, I'd had good luck with them before) and we can go when I visit him on Thursday if I want (he's seen it already too but doesn't seem to mind the prospect of seeing it again!). I do.

I look forward to seeing the film.
hollymath: drawing in black of owl wearing big red glasses.Words on its belly:"it's not about how you look, it's about how you see" (Default)
I was coming up the escalator at Piccadilly, from the Fairfield Street entrance. An older white man in a suit, with a wheelie suitcase, was a few steps ahead of me on the escalator. When he got to the top, he stopped (well out of the way, not like a tourist in London), turned around, smartly snapped the handle down on his suitcase, and gave me just long enough to think I wonder what he's doing... before he said "you're coming to the end...now!" just as I was indeed getting to the top of the escalator myself.

It made me laugh. I'd never had anything like this happen, or heard of it happening. It turns out that escalators are exactly the kind of thing white canes are good at -- I always put the cane on the step ahead of the one where I'm standing so I can feel, I can get a bit of warning even if I'm not paying attention (because I can see well enough to be fine on escalators anyway if I'm not daydreaming) and it tends to work very smoothly.

Still, I appreciated the guy's unobtrusive, effective help that only lasted a second and didn't interfere with my own plans about how I was getting around (as a person who's probably more sighted than I look when I'm using my white cane, sometimes overhelpful strangers surprise me and cause more of an obstacle than I had before, unfortunately).

I laughed a little at the sheer delight of it, told him he was kind, and moved on thinking about how once I get this immigrant book out of the way (it seems now like I never will, urgh) I might take all my thoughts about the sighted class -- I've been offered lots of classes on living with sight loss but I don't think it's me who needs them, it's everyone else! -- and make that into a book or something too. Since I can't actually get a job teaching the class, which is possibly the thing I'd most love to do (besides be an astronaut or something even less plausible), I could maybe put it all in a little book.

The next thing I had to do was buy my train tickets, so I got in line to do that. Just then I got a text so I took my phone out and I could swear that the middle-aged white man who'd just joined the queue behind me was glaring at me. But I chalked it up to either his bitchy resting face or just me being paranoid because I do worry about doing anything when I'm out that complicates the perception of me as a blind person. Of course, totally blind people use phones too but it's another thing that subverts people's expectations of us and I'm aware of the potential animosity that can be caused by anything that does that.

So the line crawls along, there's a big group of students or tourists or something who seem to be going to London and are having to have peak and off-peak tickets explained to them. Eventually I'm at the front of the line and someone calls "next please!" from what seems like miles away. It's certainly on the other side of this group of European young people who still don't have their tickets but do all have rucksacks and bags everywhere.

And this part of Piccadilly station is really badly organized; there's no way for people who want to leave with their tickets to get out except to walk past the queue of people waiting t buy tickets. So I see a man walking towards me from what I can presume is the ticket seller who's just shouted for me and because she's way down the other end and there are all these people and their bags at one of the nearer ticket counters, I'm waiting for this man lwaving to walk past me before I attempt to go to the ticket seller because there's no room to do anything else. (And indeed I still end up bumping into somebody's bag anyway as I tried to get past this big group of people.)

But as this man gets past me and I start moving toward my ticket seller, the grumpy-looking guy behind me says "go on love!" in his grumpy northern-man voice. I can't help bristling at this, and snapping "yes I was doing." I add a "thanks" that I hope is understood with all the sarcasm with which I intended it but I worry that it's to mitigate the possibility that he was telling me to be nice and not to be mansplainy or ablesplainy like it seemed to me. (Or even just to be impatient but in an impersonal way.)

And then I was annoyed that I do expect sexism and ableism so much that maybe people would legitimately be able to say "but I was just trying to be nice!" and I am in fact an ungrateful bitch.

But then I thought about how this contrasted with the other thing that'd just happened. I didn't mind being singled out and helped then (even when it was help I didn't strictly need). I was pretty convinced this grumpy man wouldn't have been as grumpy if I weren't younger and more feminine than him even if I weren't carrying a white cane.

We never interact with people as only one of our identities unfortunately. I don't know what it is about me that makes people react to me like they do. I can't react to them except as a combination of all the other interactions I've had and what those have led me to expect. Of course it's not fair to each new stranger I might encounter and maybe react to a bit more snippily than they think is warranted. But it's hardly fair on me, either.

Anyway, I'm really going to have to think about writing that book! Like I need another book to be writing...


May. 24th, 2016 08:10 pm
hollymath: drawing in black of owl wearing big red glasses.Words on its belly:"it's not about how you look, it's about how you see" (Default)
The eye hospital appointment I wasn't looking forward to this morning was actually really good. A year ago I had a low-vision assessment, which basically consisted of "gadgets, can we give you them" -- it's where I got what they call a telescope, which I call a monocular because that's what I was told it was called when I got a much more low-tech one in grade school, and because telescopes are for looking at planets, not train departure displays. The orthoptist I saw the last time I was at the eye hospital told me he'd make sure I got my 12-month follow-up low vision assessment like was planned at th my 12-months-ago low vision assessment, and I got the impression I'd be discharged from MREH then to the care of my GP and optician as my condition's stable and...well, basically, I only had anything to do with them in the first place because I had to, to get registered blind.

This time I got a trainee who only introduced herself by her first name (Gemma), and she was really great. Somehow I ended up talking about the assessment I'd had from the council last summer, my frustrations with Henshaws who seem to limit their interest in me to trying to get me on a course I don't think suits me, my struggles with the new swimming baths -- I was talking to somebody who was a trained lifeguard, so she really lit up at that and was very confident about the advice she gave there, which was kind of great. We talked for absolutely ages, it was oddly therapeutic and entirely unexpected. I did come out of it with another gadget, though I wish they made it with a slot for each kind of coin or something; pound coins are some of the easiest to find because they're twice as thick as the others.

Anyway, I went straight from the eye hospital this morning to helping Morag with her Ph.D. research, which just meant walking around on a wonderfully hot and sunny afternoon and wittering as much as I liked, so basically perfect for me. Again, oddly therapeutic even though I don't think I was very good at answering questions specifically about Manchester which is what I was technically supposed to be doing, but Morag seemed very happy by the end of it, and I had a good time.

I also failed entirely to eat anything until after this, which might have contributed to me going home (and, admittedly, after a sandwich and a yogurt) crashing out hard. I didn't get much sleep last night, I got home just after Andrew had left for his pre-Brian-Wilson-gig pub meet, the dog was being cuddly and sleepy, so we both just crashed out.

I woke up not feeling up to going to the WI meeting tonight -- which is a shame because I missed the craft group yesterday for basically the same reason -- and am now struggling a bit: I feel like I should have done more with my day, even though there was a lot of thinking involved in both of the things I was out doing today. I was so good at keeping on top of the housework when Mom and Dad were here and that has inevitably fallen by the wayside since, which I'm vaguely disappointed about...but of course not enough that I've actually tidied or vacuumed or done the dishes. I ended up talking a bit to Morag about my Kickstarter book, and now I'm feeling guilty about not doing anything on that, either.

But also it occurred to me that two weeks ago I was frantically tidying and fixing and stressing ahead of my parents' visit, and that everything has been pretty exhausting since. I just worry when I'm so lacking in motivation, when I just shut down any time that there isn't some external pressure getting me to do something.

Oh also I had a phone call on Sunday about the fat-girl focus group thing, which in the process answered the question my friends and I are pondering there about what's meant by "an outfit you feel really good in" -- like Sass and I feared, it seems to be a "what makes you feel sexy" type of thing they're after, which...I don't ever do? To me, an outfit I feel good in is trousers with lots of pockets and a t-shirt with something funny written on it. But I can work on that tomorrow -- homework's not due until then!

The lady who rang me seemed to think I'd be awesome at this...once again that thing about me that Em J so diplomatically refers to as "being direct" is a feature and not a bug like I usually worry it is. Apparently this is an unusual setup in that there will actually be senior people from the company paired up with us to hear what we have to say, and with the practiced delivery of someone who's had to reassure many fat girls, this woman said "they'll be more scared than you are." Me, not needing reassurance of course, was like "quite right! bring it on!" (only to myself though...but I probably gave that impression anyway in what I did say, which might be why she said I was going to be awesome at this). Should be a laugh, anyway.
hollymath: drawing in black of owl wearing big red glasses.Words on its belly:"it's not about how you look, it's about how you see" (Default)
In the interests of fairness: the second pair of curtains my parents bought for us, for our bedroom, are good and an improvement over the heavy, ugly ones we had before.
  • They're blackout curtains, which I promised Andrew I'd get because he says he doesn't sleep well in the summer when it gets light too early.
  • The color my mom still insists is berry is not pink like I feared, but a nice dark red I don't actually hate the sight of; colors aren't too important to me but still this is something I can hardly say about anything in my house.
  • These curtains don't billow so dramatically, which not only makes me less likely to be in a horror movie (to be fair they should probably be more filmy and pale for that to be a concern anyway) but also means all the stuff on my bedside table has a much better chance of staying there rather than getting knocked off whenever the breeze came from the right direction.
Today we didn't have to get on a bus or go to the Arndale, which is a win because it's the first time that's happened since they got here. Especially a win since I'm not using my white cane with them, a decision I still think is less aggro than their reactions to it (and their reactions to other people's reactions to me, if you see what I mean) but which is making all the crowds and shopping much more difficult for me than I'm used to. And I already find it pretty damn difficult.

More drama with Andrew's family today. More card games with them, too. I love them but I'm so exhausted. Perhaps it's no surprise that I think I've got a migraine now (hooray for blackout curtains! I don't like them normally -- natural light helps me wake up -- but they're useful when I've got a migraine!). Until half an hour ago I hadn't had any food since breakfast, which was only scrambled eggs on toast.

Eating and sleeping to other people's schedules is always so bad for me. The night before last, I only got three hours' sleep, was awake from one o'clock in the morning, and still had to get through a whole day of shopping and socializing and playing the role of a more cheerful, patient and polite version of myself.

And I'm missing Eurovision for this! Right now! I'm trying to console myself with the thought that I'd be missing it anyway due to my migraine...but somehow I think if my parents weren't visiting and preventing me from seeing it, I might not have the migraine.
hollymath: drawing in black of owl wearing big red glasses.Words on its belly:"it's not about how you look, it's about how you see" (Default)
...I've got too much of a headache to write anything myself, but I wanted to highlight a couple of links I found again today, that say a lot of the things I would be saying.

What it's like to be legally blind does such a good job of describing the state between fully sighted and totally blind that is so little understood, so rarely expected by the sighted world to even exist at all.

"I don’t fit most people’s image of a blind person. I look at things."

I especially like the "there's no easy answer to 'what can you see?' " point, having recently realized this myself when an earlier blog entry about my partial-sightedness inspired that question, and I gave the kind of answer I'd been used to giving since childhood, that I see "pretty well" considering, and with examples of common things that help people know how to interact with me -- that I can see the face of someone having a normal conversation with me, that I can read normal print, and so on. But the more I thought about this answer, the less adequate I found it. I have good days and bad days. My eyes tire easily thanks to the nystagmus, and are susceptible to any tiredness, stress or illness I might have at the time. The environment I'm in can make a big difference to how well I can see -- is it crowded with stuff, what's moving and how fast? -- as can whether I'msomewhere I'm familiar with or not. Yes, part of that's cheating, I know I don't "really" look at a lot of things in my house or on my route to the bus stop I usually travel from...but also part of it's that when I know what's familiar it's easier to spot things that differ from what I'm expecting, and of course those are usually the ones more likely to be important for me to know about.

So, I think I've written about this before, but please don't ask a visually impaired person what we can see. I don't know what you can see, so if nothing else it's like being expected to answer a question in a language you don't even speak.

This is good, too:
I spend my life figuratively putting together the pieces of a jigsaw puzzle to get some visual semblance of my world. Have you ever tried to put together a jigsaw puzzle without having a picture of what you were putting together? That’s what every day is like for me, except I don’t even know if I have all the pieces.
The other link I think is so good is what a white cane really means. This too is written by a partially sighted woman who, like me, was well into her adult life before starting to use a cane. She went from finding no need for it, to using it when it was useful to her but getting confused looks when people also saw her do something like ride a bike or read a printed book, not understanding the special circumstances in which she put herself in order to do those things (following her husband on his bike or holding the book two inches from her nose or whatever), to carrying it all the time to avoid those comments, and then feeling annoyed by the ways in which it is inconvenient or cumbersome. I nodded along especially vehemently when she was talking about the internal debate on whether to take the cane on leaving the house:
At the same time, I try not to bow to social pressure and to only carry my cane when I truly need it physically or socially. But the repetitive conversations make that hard. There are many moments, when I stand by the front door struggling with myself. I'm not going anywhere with cars or I'm going to be with my husband every minute and I don't really need the cane to tell people I can't see in this circumstance. And yet I know I'll have to explain myself and the thought of the embarrassment makes me tend toward the cane. And the cane keeps me moving slow and cumbersome. I miss the days of freedom when I could have my hands free and move quickly without getting comments.
I remember hearing about this on an episode of In Touch, the Radio 4 show about blindness and blind people, in an episode that I happened to catch by the luckiest of chances because it seemed to be about someone in a position a lot like mine.

Here's a few minutes of this woman's interview, which I've just quickly transcribed. "I feel it actually disables me further. I'm quite able to get out and about on my own as long as I'm slow and careful. The last thing I need to do is tie up one hand with this stick which basically is not serving much practical purpose, it's just sending out a message to people around me." She says she has small children and wants/needs to hold their hand in public, and if you're carrying shopping, school bags, scooters, bus passes, "the last thing you need is to basically tie the other hand around your back. I need my hands!"

There's also the issue of not wanting to muddy the waters, not wanting to diminish the understanding that people who use white canes are "properly" blind, while also not wanting to be perceived as a fake for any sign that you're not completely sightless.
I've certainly heard horror stories of people who've been at bus stops and who've folded away their symbol cane to get on the bus and got on able to mount the steps without any problem and smile at the driver, and the people around them slightly suck their teeth. As in 'mm, you're faking it!'

At the same time, what I'm aware of when I'm out with my children without the white cane: my daughter said to me tearfully in a confessional sort of way she admitted that she sometimes finds it quite difficult being out with me without the white cane. Because she's aware of the people around me being unsure of why I'm hesitant at the top of stairs or why I'm slow in crowds or I might bump into people. I'm quite oblivious of their reactions, but she can see it because she's there with me, in some ways sort of helping me, and she says she finds this very distressing.

And I found this worrying, I found it sad for her, but at the same time I felt sorry for the people around us who are exasperated by me, because I think that people would like to have the chance to be supportive. I think if they understood more about the spectrum of visual impairment and about the different degrees, then people would step in and be much more helpful and patient.
And I think that too, actually: I think people would like to be more helpful and less exasperated, and that a lot of them would be if they knew, and I think I'd like to be less impatient and exasperated too. She didn't have an easy answer for another way to indicate partial sight, and I don't either.

I think that's because the solution to this is massive, industrial-scale public education about disability -- sight loss in particular but also disability in general, because this is basically the same problem that wheelchair users who ever stand, walk or ride bikes (what the hell is it with people thinking disabled people don't ever ride bikes?) get when someone thinks you can't possibly do any of those things and also benefit from a wheelchair. And that's way harder than I can sort out right now, because it's bedtime.
hollymath: drawing in black of owl wearing big red glasses.Words on its belly:"it's not about how you look, it's about how you see" (Default)
I was trying to write "visually impaired" but my phone changed it to "visually important."

Yes, phone. That too.
hollymath: drawing in black of owl wearing big red glasses.Words on its belly:"it's not about how you look, it's about how you see" (Default)
Waiting in GP's surgery.

Two women come out, one elderly and one middle-aged, probably mother and daughter. 

The younger one is carrying a wooden walking stick as she follows ‎the older towards the door. "Don't you want this?" she asks, offering it.

The older one takes it just as she happens to walk past where I'm sitting, catches my eye, grins and whispers conspiratorially "I like to be naughty and do without it if I can."‎

I grin too, partly because she's taken me into her confidence like this but also because while she probably thinks I'm too young to understand I, with my white cane folded up in my backpack next to me, am totally with her.‎
hollymath: drawing in black of owl wearing big red glasses.Words on its belly:"it's not about how you look, it's about how you see" (Default)
This is a good point, but its use of "blind" to mean "doesn't know/doesn't care" about something did made me laugh.

It's used as a parallel to the I-don't-see-race type of "colorblindness," which is not a stance that -- however well-meaning -- supports the racist status quo but also bugs me because it is using "blind" in this sense of ignorant/uncaring.

A lot of our language does this: we talk about people being "blind to the consequences of their actions," or even "double-blind" scientific trials, where "blind" always means someone doesn't know or doesn't care about something.

Obviously there are far bigger problems in ableism, including the one written about here (though whether autism should rightly be considered a "disability" as such is a whole other can of worms I won't call up because I can't put it down). But the words we use are important in subtly shaping how we think, and what we think there is to think about.

I swear, everyone who thinks they have to get right up in my face and ask "do you know where you're going?" when I'm at a bus stop, everyone who thinks they can sneak in front of me in the queue, everyone who's amazed I choose my hair and my clothes to look the way the do, everyone who addresses questions to the person I'm with rather than me directly, has been influenced by this kind of metaphorical thinking that blindness implies ignorance or apathy.

But anyway, there's nothing except the title here that mentions any of that, and it is making some good points about how pretending autistic people aren't autistic is the opposite of the kindness some well-intentioned people believe it to be. Frankly, most of the autistic people I know think it's better than being neurotypical, or at least it would be if we stopped imposing our neurotypicality on them.
hollymath: drawing in black of owl wearing big red glasses.Words on its belly:"it's not about how you look, it's about how you see" (Default)
The volunteering course I mentioned at the end of this overlong entry is almost done. Next Thursday will be our last day of it, and then we find out who gets what placement and start those in a few weeks or whatever, depending on where we're going.

A few weeks ago, lovely Emma the volunteer coordinator at MOSI told me she'd been in a meeting the day before about the new exhibit they're going to have ready for the Manchester Science Festival in October, and that the people running this want to include a tour for visually impaired people. But they've never done this before and they don't know how to go about it. Emma said she sang my praises to them -- I mean, the thing that got us talking about this was that our group was on one of its visits to museums involved in the scheme so we'd know the places where we might end up with a placement, and I'd been bitching about the light levels and how un-obvious obstacles in the path were and stuff like that. Which I pretty much do whenever we're anywhere, including mooching around the galleries in MOSI which we do all the time as part of our course. This combined with my well-established "enthusiasm" apparently had her singing my praises in this meeting, and there was talk of the possibility that working on this could actually be my placement. Or, well, somebody's: the way this works is people from all the partner museums/galleries/etc. with volunteer roles to fill come and pitch them to us, and we just have to write down which is our favorite and which is a backup and next week Emma will hopefully be able to arrange it so everybody gets their first or at least second choice.

So it isn't a given that this volunteering position would go to me, but Emma did preface her description of it with "I know this seems like a fix but it's totally coincidental!" which I think is a good sign of how obvious she thinks I am for it. She'd even given me a call a week or two ago because she was concerned that if I ended up doing this I might feel a little disappointed that my volunteering ended up being so different from what we were led to expect at the beginning -- the other volunteer roles offered by all the different places are really front-of-house, out engaging with the public, and mine would actually have a couple of weeks of working in an office...but that's because I'd actually get to help the exhibit's curator create content for this, as well as then developing and actually getting to run the tour for visually impaired people. And I'm like, yeah, I'm completely fine with doing that rather than sitting behind a table with a taxidermied fox on it and, as the woman from Manchester Museum who pitched that role to us said, "I've seen that fox every working day for the last fifteen years but still when someone comes up you have to go 'Would you like to touch the fox?" and be excited about it like you've never seen it before yourself, because they've never seen it before." And that's a good and worthy thing to do (we saw kids go mental over that fox, and other museum objects they could touch, on our visit to Manchester Museum), and I think I could do it, but it sounds...awfully extroverted for me, to say the least.

And also, by design, the volunteer roles that tend to go along with this course are pretty interchangeable -- any of us could do any of them, more or less -- whereas this new thing that's come up, even though it really was entirely coincidental, makes me feel like I could bring something particular to it, that it'd be different -- maybe even better! -- if it was me on that placement rather than any of my coursemates, well-meaning and keen though all of them are. And I just think it'd be so fun.

Plus, with the exhibit running from now until next September, when whatever they have for the next science festival will replace it, this role unlike any of the others doesn't have as formal a six-week cut-off point as the rest. It was clear from a lot of the people making pitches for their museum that there are often opportunities for the volunteer roles to be extended past those six weeks if the volunteer and the organization are both happy with how it's going, but this MOSI one explicitly says it'd be ideal to be able to run the tours until next September. A year's worth of volunteering there doing something that awesome made me want it even more. And this is a pilot project, so if it goes well there will hopefully be more things like this, which I'd selfishly really love there to be, so I really want this to go well, whoever ends up working on the project...but of course that's just another reason to hope its me working on this rather than having to just cross my fingers for somebody else!

But lovely Emma is wisely giving us all a week to think over what we want -- we did hear eight or nine pitches in the end, and after all that I felt like my brain was so full of information it'd all slosh out of my ears if I turned my head too quickly. So I haven't even formally said yet what I'd like -- and I'm still kind of deliberating over my second choice actually; it'll be either another role at MOSI more like I originally imagined -- helping people who look lost or confused, pointing out interesting stuff they might miss, etc -- or else the one at Ordsall Hall, which is as great as its website is awful. We visited it last Wednesday. We went from I think a bunch of people not even having heard of it (even me, with the reputation of having already visited the most of the museums involved in this scheme) to a bunch of people falling in love with it and wanting to volunteer there. It's kind of the opposite of MOSI in that it's a tiny place with few staff so everyone does everything: you can help with tours, do some gardening, dress up in Tudor costume, sell tea to coachfuls of old ladies (I saw this happen while I were there; they were adorable), even clean. And despite my other interests being all in the behemoth that is the Museum of Science and Industry, I do really like the idea of doing a bit of everything, I loved the building, and everyone working there seemed friendly.

I've been saying all along that I'm sure I'll be happy with whatever I end up doing, and I'm still sure of that. The mere fact that everyone should be able to get one of their top two choices, and I'm having difficulty choosing among three, seems evidence of that. We haven't been anywhere I didn't like (except the Imperial War Museum North, which I think is just too inaccessible for me to want to volunteer there, and since a lot of that is intentional -- the rationale being to convey how disorienting and confusing war is, which fine but what's "slightly" disorienting to the average person is prohibitively so to me... I get the impression that they're another place that thinks accessibility just means wheelchairs can get around there). But I'm still impatient to see how this works out!
hollymath: drawing in black of owl wearing big red glasses.Words on its belly:"it's not about how you look, it's about how you see" (Default)
So I still have the guide cane, but another thing I did yesterday was get the standard "pencil" tip changed for a "roller" one, because it gives me better data about unevenness in the path ahead of me, which is what I benefit from most.

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.


Aug. 11th, 2015 02:11 pm
hollymath: drawing in black of owl wearing big red glasses.Words on its belly:"it's not about how you look, it's about how you see" (Default)
So, after a few weeks of totally ignoring the problem of not finding much use in the white cane training I was offered, I finally adulted sufficiently to talk to the woman for long enough that we both ended up a bit more on-the-same-page and happy to continue. That was last Wednesday, so my first Tuesday back at this was today.

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!
hollymath: drawing in black of owl wearing big red glasses.Words on its belly:"it's not about how you look, it's about how you see" (Default)
In one of my (countless, surely) recent posts about blindness, lovely [livejournal.com profile] artremis linked to this this description of a Cbeebies show called Melody which I'd never heard of because having no kids means I only am aware of the shows my parent-friends complain about (so, Peppa Pig and In the Night Garden mostly). But this one sounds really awesome! For so many reasons.

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).
hollymath: drawing in black of owl wearing big red glasses.Words on its belly:"it's not about how you look, it's about how you see" (Default)
Because everyone (including me!) is terrible at descriptions of photos they upload.
The tool works in two parts—a browser extension for blind users that provides user-created descriptions of images around the Internet, and a website for sighted users to provide those requested descriptions. If a blind user clicks on an image of an apple tree, which is not properly described in the HTML code, the photo will appear on the crowd-sourced website where sighted users can write “apple tree.” The highest rated description based on sighted user votes will then replace the original description, and be read aloud to any blind user that scrolls over the photograph in the future.
The person who developed this, not blind or a web developer usually, acknowledges that it's kind of a band-aid for the real problem with is that being blind on the Internet has gotten increasingly terrible since the 90s. Now everything's so dependent on Javascript and Flash -- pictures whizz past and it's never obvious where to click and suddenly a thing like finding out what's on at my local arthouse cinema is basically impossible if I can't get Andrew to do it for me...and I'm a relatively sighted blind person. I don't use a screenreader, not because I'm actually confident I wouldn't benefit from it, but because I know the experience of doing so sucks so much on the modern web so I'm better off using up all my visual-processing spoons on the Internet instead.

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.
hollymath: drawing in black of owl wearing big red glasses.Words on its belly:"it's not about how you look, it's about how you see" (Default)
Because "cane training" will make my dirty-minded friends think of something else and giggle?

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-about-me was echoing that pattern from my childhood, and how much was me thinking it was like that and falling back into my childhood habits of not arguing when people tell me wrong or just odd stuff about myself because arguing never worked then. I don't want to return to that kind of fatalism but also I think these kind of jobs foster habits of not always listening to their clients, particularly if what we're saying can be parsed as "I can't do that" or "I want to do an easier version of that," and that once what I say has been put into a category like that I'm pretty much doomed for evermore.

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 [personal profile] 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.
hollymath: drawing in black of owl wearing big red glasses.Words on its belly:"it's not about how you look, it's about how you see" (Default)
I get this question a lot (most recently in the midst of a stupid new layer of airport security theatre that the U.S. has apparently developed). Not only is it rarely relevant -- this airport worker was just feeding his curiosity, it wasn't relevant to anything he was doing -- but it's actually an impossible question for me to answer.

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

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

It's so much easier, if you really have reason to want to know "can you see my face?" or "can you tell where you're going?" or whatever, to just ask that. The open-ended questions are much harder for me to cope with, and also lead me into "being an ambassador for the thing about me that other people don't run into very often," which I don't always have time or energy for. I'm really happy to answer reasonable questions (when I think they're reasonable!) but I like to know when that is what I'm doing and not just indulging someone's curiosity.


Jun. 13th, 2015 11:29 pm
hollymath: drawing in black of owl wearing big red glasses.Words on its belly:"it's not about how you look, it's about how you see" (Default)
The help I'm getting from the sensory team, while helpful, is a bit nerve-grating on occasion, too.

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

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

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

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

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

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

I'm not saying that my confidence or my approach to stuff doesn't affect my experiences and choices -- of course these things do, and they are important. I think this is just an example of where being new to the system, and thus treated like someone new to sight loss, means I don't quite fit and therefore maybe these things stick out more to me. Of course I do understand why things are this way: the services for people with sensory impairments stand a better chance of changing the impaired individual than they do the whole world, so it makes sense to focus on what they can help. It just irks me after a while to hear that all I need is "building up your confidence." Especially because that implies that I don't currently have much, which I don't think is true!


hollymath: drawing in black of owl wearing big red glasses.Words on its belly:"it's not about how you look, it's about how you see" (Default)
too short to be haughty, too nutty to be naughty

October 2016

234 56 78
9 10 1112131415
1617 18192021 22


RSS Atom

Most Popular Tags

Style Credit

Expand Cut Tags

No cut tags