hollymath: (Default)
Yesterday was nice too: Andrew had called me Thursday afternoon and said I could stay over if I wanted, so I was still in Brighouse Friday. Which was nice because it meant I could go along with Jennie and James and Holly to see Wonder Woman... Or attempt to, anyway.

When I asked for the headset there was a longer than usual time before someone got back to me and he started off with saying "We didn't advertise this ad having AD..." so I thought Oh man, here we go... But actually it was dealt with really well: what he meant was that since the film was brand new, they hadn't had a chance to test this stuff yet to make sure it was working. And since they'd had people complain about it being advertised as such when it didn't work, they had stopped taking the film companies' word about the audio description until they'd checked it themselves, which usually takes a few days.

They were still happy to give me the headset and let me try it, though, so I did. Sat through a bunch of bizarre ads (including a horrific one for Subway where a man contemplates getting a different sandwich to the one he always gets, the overdramatic voice-over encouraging him on, and just when I'm thinking "this is Subway saying 'we can give that mediocre white man the confidence he's so famous for!" the ad finishes with him getting the different sandwich and the congratulatory voice-over: "You did it. You're Columbus. Exploring new worlds!" I stared actually open-mouthed at the idea that the beginning of the genocide and subjugation of an entire hemisphere could be compared a) to a fast food order and b) favorably).

And a bunch of trailers for movies I didn't want to see (though worryingly the Transformers one actually looked kind of good?! I don't think it will be, but I've never had such a thought before).

And then the movie started and...yeah,thr audio description didn't work. It was clearly there, but not configured properly so it was too quiet to discern, and really staticky. So James, who'd no y volunteered to leave it I had to, and I went to tell the people this and they were pretty nice and apologetic about it. They offered me another headset but since the movie had already started and I didn't want to disrupt people (and because I'd had the same problem when we'd tried to see Rogue One and trying new headsets then hadn't worked, I was happy to just leave it. I know Andrew wanted to see this movie anyway so I'd get more chances to.

I don't usually bother about seeing things right when they come out, so I hadn't thought about this as an issue before. It's a shame they can't commit to testing the audio description sooner: for big "event" movies like this that people might want to go to with their friends when it's all exciting, it's a shame people who benefit from audio description don't get to do that. It's not like it's hard to test: you just have to be in the cinema with the headphones.

It's also kind of a shame that there's no way to test the audio description is working before the movie actually starts. This isn't the first time I've watched all the trailers and ads when I can't watch the movie, and I'm sure it wont be the last. But this seems like a pretty tricky logistical problem that I don't have any suggested fixes for: I'm not sure to what extent the film company, the cinema or both would be responsible for that and I can't see any of them bothering about it anyway.

Anyway, instead of watching a movie, James and I went for lunch (I had the best beer, Theakstons Barista Stout, it's lovely and chocolatey) and while we were there Katie called me and said she wanted to "book me in" for some point this weekend. Partly because we keep saying we should do something on the weekends and it keeps not happening, and partly because she's particularly excited that I'm a citizen, or at least will be on Wednesday, and wants to celebrate.

Which I think is terribly sweet. Last Friday I got some nice food and a lot of rum bought for me by friends who wanted to celebrate me getting my citizenship. I'm finding having all this attention paid to me a tiny bit awkward, because I'm not used to it ("we can go to [place we always go for tea and food] or whatever you want," Katie was saying on the phone; "it's your choice because it's you we're celebrating"), even though it seems on a par with a birthday party so not like a huge scale of celebration but... I never get birthday parties! (My birthday is right before Christmas so I'm always back with my family then, and they never even ask me what food/restaurant I want, since it's always "well your grandparents won't do X so..." or most memorably on my 21st birthday, supposed to be a rite of passage, when I had to go to my uncle's 50th birthday party and my family spent it huddled together amidst a sea of his wife's family, huge and entirely unknown.)

With the inconveniently placed birthday, my friends have long suggested I celebrate it at some other time of the year ("have two birthdays, like the Queen does!"), maybe in the summer rather than the winter. And it's worked out that the citizenship ceremony will be around the time that's halfway to my birthday, so this year it kind of feels like that works out. I'm not going to make it s yearly celebration though! This year, we're celebrating a big accomplishment of mine. Its anniversary won't mean anything to me. Maybe if citizenship felt like something better than just a crisis averted, I could do that. But it isn't so I can't.

On our way home, James and I went to the ticket office at the train station to get tickets sorted out for going to London next month. Last fall we got tickets to see the final of the cricket Women's World Cup, for ridiculously cheap because who's going to watch women play sports, right? It seemed like a very far away thing, I forgot about it and generally thought it was ages away, I'm that way that July seems when it's September or October. But now it's next month and he found us a hotel and I got the train tickets so now I'm getting really excited. It's at Lords and everything, so I'll get to see that too.

(There was actually an ad for this World Cup before the movie; I've never seen women's cricket advertised like that before (I don't have a TV so I only see ads before movies, and it's just occurred to me that this might have been because the movie also had the word "woman" in the title). So that got me excited too.)
hollymath: (Default)
I didn't get the job. Boring details about that. )

Anyway, almost as soon as I got home from the interview, it was time to leave again. Part of me wanted to sleep for a week but I'd arranged to go to the theatre with James and Jennie and Other Holly back when I couldn't have known what a tiring week this was going to be, and the rest of me knew that I'd feel better once I got myself there.

And I did. We saw "The Play That Goes Wrong," which pretty much tells you everything you need to know about it. [personal profile] miss_s_b's review is here (very slight spoilers) which is lucky as I think I'm getting a migraine so should get off the computer before I could write one myself.

To hers I only need add that she was awesome for giving me a little impromptu audio description, which especially at the beginning of the play where the gags were all visual was very welcome because we were sitting way at the back and so I was doomed to hearing people laughing a lot and having absolutely no idea why, which wasn't exactly the mood-lifter I needed. I was worried someone would tell us off for Talking During the Performance but luckily no one did and it totally made the experience for me. There were lots more dialogue-based jokes later on and some of the phsyciality was stuff I could just about discern, but I still would have felt like I'd missed out on a lot if it weren't for my kind friends.

We were a pretty noisy audience eventually anyway, so maybe I needn't have worried. Some asshole to the left of us started shouting "funny" things (as opposed to actually funny things) almost right away, and continued to throughout the first half. And eventually, the po-faced actor/director-playing-the-inspector's tantrum included "Despite appearances tonight, this isn't a pantomime!" and I feel I earned all my British-citizen cred by being the first person (from what we could hear, anyway) to shout "Oh yes it is!"
hollymath: (bill and doctor)
Well, we'd had four weeks in a row of Doctor Who I liked or loved, so I suppose we were due a rubbish one but...that made me cry. And not in a good way.

And I'm also annoyed that I can't talk about why without saying it's a spoiler. )
hollymath: (Default)
I never had to navigate the American system as a disbled adult so I don't know all the details. So I'm glad [personal profile] forests_of_fire is happy for me to copy what they wrote and share it here.


I don't often make pleas to contact your Congresscritters (mainly because there is SO MUCH to contact them about x.x), but something is currently in the House and Senate that can make a huge difference in the life of disabled people.

U.S. Congress is weighing the idea of expanding the ABLE Act.

The ABLE Act set up a system that (currently) allows people who became disabled before the age of 26 to save money in special ABLE accounts. One of the bills currently under consideration will raise that age to 46. Honestly, this is the thing I'm most excited about because it means that more people will have access to ABLE accounts and I am all for that.

But this is how the ABLE account impacts a disabled person's life. They can have up to $100,000 in an ABLE account without it impacting their benefits, though they're only allowed to put $14,000 a year into your account. Once someone hits $100,000, the money will count against them. (Obviously, that's going to take a while, since you can only put in $14,000 a year.) The absolute upper limit for an ABLE account is $426,000, which would take quite a while to save up.

The money in an ABLE account is tax-free, as long as it's used for things that help a disabled person take care of their needs, remain independent, or better their life. This means the money can be used for anything from medical bills to housing to education to transportation. If they work, they can put their net wages directly into their account or they can put money in from other sources, like financial birthday gifts.

This is AMAZEBALLS for people who are disabled. One of the main problems with being disabled is that it's impossible to save money because the threshold for getting your benefits dinged is so low. Often, even working ends up coming out as a net loss, financially. Even if you don't have tons of money to sock away, being able to save money for future expenses without having to worry about your benefits is incredibly helpful. And, even if your state doesn't have its own ABLE account set up, you can apply for an ABLE account through another state. You pay a lot more in fees, but it might be worth it just to be able to put money away for future expenses.

These aren't straight savings accounts -- they're investment accounts. But you can use the BankSafe option, which means that all your investment is insured by the FDIC. That's what I use because I can't really afford to lose money. There is a small fee ($2.50/mo. here in Ohio if you live in-state) for managing the money and there's an annual fee. But it's a hell of a lot better than what we can have.

So, yes. If you're so inclined, please contact your Congresscritters and let them know you support the expansion of the ABLE Act. Also, please feel free to copypasta this to get the word out.
hollymath: (Default)
I've seen this on my social media a few times in the last day or so, and it reminded me of an entry I wrote but never posted a few weeks ago, on the day I discovered these signs on those toilets. Here it is:
New pinnacle of helpiness today -- helpiness being where it's more important to someone that they feel they're being helpful to a disabled person than that the disabled person is actually helped.

Not just disabled people, I'm sure, but that's how I'm most used to encountering it.

Today's episode came when I was in the Arndale and headed for the toilets.

These ones are down a hallway where first you have doors to babychange rooms, then a smaller hallway heading off to the ladies', then doors to two accessible toilets, then gents' at the end of the corridor.

Sometimes I feel like a total fraud having a key for disabled toilets, but the Arndale toilets are the kind that made me want it in the first place. They're so badly designed: it always seems to be chaos in the ladies', with people crowding each other going to and from the cubicles, a trough with faucets placed at intervals along it rather than proper sinks, and the most invisible hand dryers I've ever seen: smooth white boxes on the background of a white wall, with only a tiny light that's red until it's in use when it turns green (or maybe the other way around, or some other color, but you get the point).

Regular toilets in modern buildings often suffer, as the buildings themselves to, from Design. If it's won an award, you know it'll be a nightmare for accessibility. Because people think accessibility begins and ends with a ramp for the wheelchairs, and while step-free access is important there's a lot more to consider: I've got no mobility impairments but that ladies' room would only be properly accessible to me if it were empty of humans (or, as one of my blindie steering group members calls them, "obstacles").

All this is to say that I was heading for the accessible loo. (Which, I noticed, had on its sign "not all disabilities are visible", Yay.) And as I was walking towards it, going just past the turnoff to the ladies', a man who was standing there said "here, here!" and made some kind of gesture I didn't catch. I thought he was talking to someone he was with. All I knew was that he was in my way, so I had to shuffle around him as I was fishing out my key for the door.

And it was only as I did that that I realized he'd been trying to direct me to the ladies' loos. He was standing in my way trying to direct me to where he thought I should be going.
Of course the problem I have here is sort of the opposite of the problem invisibly-disabled people have: when I'm carrying my cane, as I was then, people know I'm disabled. They just don't think of it as a disability that's relevant to an accessible toilet, I guess. But for me, having a bit of calm and knowing where everything is -- the sinks and hand-drying equipment here are not Designed. The light is often dimmer (since regular public bathrooms can be really harshly lit) but that also means it glares less.

Plus, the other blind people I know mostly seem to have keys, so it's an understood thing among us even if this knowledge hasn't trickled out to the rest of the world yet.
hollymath: (Default)
I've said before the thing I love about Levenshulme is that it seems to be half people complaining about how expensive the beer is in the posh places is so expensive (more than four quid!) and half people complaining about flytipping.

Yesterday morning seemed typical of that, when I saw on a local facebook group
  • Someone asking if anyone else had seen the man tasered on the steps of the train station yesterday evening
  • A picture of a burnt-out car
  • The news that a gourmet grilled-cheese and burger joint that also does mocktails is going to open
Of course the taser thing was more concerning than just justifying my impression of where I live. But it got worse.

Later in the day, after I'd utterly forgotten about all of these things, Andrew was trying to sort out his travel to and from London for a gig he's going to. I was listening even though I was idly scrolling through twitter when I came upon a tweet with a link and "I bet blind man was a PoC - I hope he is OK & remains anonymous if he wants to." I noticed the link was to the Manchester Evening News, so I clicked on it and...

...interrupted Andrew in the middle of saying "National Express" with "HOLY SHIT!" So of course he was worried, asked me what was wrong, and it took me a while to get the sentence out in the right order.

The man who was tasered at Levenshulme station is blind.

And of course he only got tasered because he was blind. He wasn't dangerous, threatening, hadn't done anything. Two people called the cops saying they thought he had a gun. All he had was his folded-up white cane.

This is my train station. It's like two minutes' walk from here. I'm in and around the area all the time. And I often have my white cane folded up.

Now, I think my friend whose tweet I originally saw had a good point about the likelihood of the man being a person of color. (Andrew said "yeah, he'll be Asian" matter-of-factly when we were talking about this. We don't know, of course, as is only right.) As a white person and a woman, I know I am not in the same danger of having the cops called on me first of all and them overreacting if they are.

But I was pretty shaken up at first, all the same.

And then I started thinking what can I do?

I just had a meeting of the Visually Impaired Steering Group on Wednesday. Had an e-mail from the manager of the council's sensory team who's helping facilitate it for us, so I'm going to ask him. And I'll try to get in touch with the RNIB and see if they're aware of what sort of training the police get on stuff like this -- it's probably them that do it, if anyone does -- and of course there are mad-keen Levenshulme community groups to try to get involved too, maybe do some kind of education event locally. I'm happy to field questions people are usually too embarrassed to ask blind people, let them see my cane, dispense information or resources or whatever.

One of my friends asked if I'd like people to walk with me to/around the station, which I was really touched but and think it's a nice idea, some kind of little march.

The ongoing conversations in my facebook and twitter feeds after I posted this link have been really thought-provoking. As has a BBC article about it which I read this morning, saying that the man doesn't intend to make a complaint and that he "acknowledged that his behaviour could have led to people being concerned."

What really disturbs me is the guy agreed his behavior might've concerned people. Let me be clear: I 100% support whatever reaction he has in the apparent immediate aftermath of being tasered and still surrounded by police. I am not blaming him here at all, I am raging at the systemic ableism in society that made this possible or necessary for him to say.

I know my behavior seems agitated/weird if people don't know I'm blind. I also get anxious a lot (especially when I'm doing something like waiting for a train! I was at a different train station around this same time, waiting for a train that ended up being delayed by 45 minutes, and in freezing awful weather it was so miserable I probably would've looked weird to anyone scrutinizing me too carefully). I do things and I get around in weird ways, and so do a lot of people with a wide range of disabilities: it affects our posture, movements, expressions, body language, all sorts of things.

And it's weird only because people have such a narrow, and an ableist, idea of what "normal" behavior is. It's weird because they're not used to us, because it's not easy for us to get out or because it's expected that we wouldn't do so on our own. That shouldn't get anyone tasered.

I don't blame the guy for saying he could understand why his behavior would be concerning (if he did as the BBC have reported, I think we're just getting the cops' side of the story here) because I can imagine just wanting to get out of this situation.

I can also understand apologizing for the stuff your disability makes you "bad" at, because I do that all the time in a social-lubrication kind of way. I will say sorry for not seeing things and sometimes even as I'm doing it I know it's something I'd object to but it's so ingrained.

That's why it disturbs me. I could see myself doing the same. Even though that is the last thing I want. But the cops have a lot of power over you, especially when they've just tasered you, and when you were just going about your day.

Things I've learned:
  1. SpecSavers' advertising has worked really well because I'm already sick of the jokes about it.Not only are variations on "maybe it's the policeman who's the real blind one!" not actually funny, but they're ableist. Remember how I'm always banging on about the uses of "blindness" to indicate ignorance of something? This is that. If you're equating stupidity or ineffectualness with blindness, you're also implying blind people are stupid and unable to do things. This is something that hurts blind people every day, and unlike getting the police to stop tasering people, it's really easy to fix so please do consider it or mention it to your friends.
  2. The police-defenders on the local fb group are really concerning me. They don't seem to understand that once someone tells the police you have a gun, it's almost impossible to prove to them you don't without getting yourself hurt in the process. (I know this is something my friends of color know very well and I'm sorry I'm only realizing it recently.) It's enraging.
  3. And sometimes even the people on the "right" side are so fucking ableist. There's been lots of "this man had to be so courageous for using public transport by himself!" that edges into cripspiration which just makes my brain itch.

Scope

Feb. 16th, 2017 07:15 pm
hollymath: (Default)
Almost as soon as I'd posted that tweet, I remembered that the nice man from Scope, the disability charity, had asked for a landscape picture to go with the blog post he was doing about me.

Unsurprisingly, I've done everything back-to-front because I was on TV first, and signed up to tell my story and be a media volunteer (someone they could call if someone asks for registered blind people or people in Manchester or whatever other category I might fall into) only afterwards.

So after Christmas the guy I've been chatting to from Scope, a friendly dude called Phil, called me up and asked me a bunch of questions and then was left with the unenviable tasks of typing that all up and writing it into a linear narrative. We went all through me emigrating here, the Shoe-Tying Occy Health Cowbag story that the BBC people had liked so much, trying to claim benefits, the intersection of disability and immigration status, all kinds of things.

Last night I saw they'd posted this...with the picture I'd just taken, and a couple more I'd sent (the bottom one is me showing off the NASA t-shirt JT got me for Christmas, so it's no fair them cropping it as viciously as they did!).

It's pretty good -- a few quibbles with the narrativd but they're most likely down to me not being as clear as I'd like to. And I'm kind of annoyed that all my terrible speech mannerisms have survived intact -- I appreciate that most people will find it easier to tell than write their stories, but I'd much prefer to write.

But when I said this on Facebook, a friend said "I was just thinking how like you it sounds -- in a good way. I like your way of framing things. It's a good article, pointing out what you weren't sure of, and how awkward it is to challenge fail when it is you in a vulnerable position employment and power wise." And this coming from someone whose disability activism I admire and which had among other things personally helped me very much, this is especially nice to hear.

The day before the Scope people asked if I'd talk on LBC (a radio version of tabloids, though of course that isn't how they described it to me!). I only had a minute, literally, so it wasn't that interesting except that the presenter told me they'd also asked people to call in with positive stories about employment while disabled and not. one. person. did. Afterward the nice Scope lady called me back, said I'd been brilliant, and finished with "national radio! that's pretty good!" and I was nice and didn't say "dear, I was on Woman's Hour once, that's better than talking to Iain Dale."
hollymath: (Default)
Here's a little clip of me and Gary from the BBC Breakfast twitter account.


I've had lots of nice messages from friends, family and even the people from Scope I talked to on Friday about this. Most of them have been about Gary.

I'm a bit sad my own family can't see me on TV -- while also kind of glad because they Don't Think of Me as Disabled and I'd worry they'd think I was complaining -- but I thought maybe I'd see about finding some nice stills from the video and getting them printed as proper photos for my family's Christmas presents. Seems a bit self-absorbed but I'm sure they'd like it. They don't have many pictures of me anyway. And none of the dog!
hollymath: (Default)
I had the strangest day on Friday.

In the morning, I saw that [twitter.com profile] SurvivorKatie had linked a tweet at me about a focus group Scope were doing for visually impaired people. "It's a chance to get paid for what you do anyway!" she said, which made me smile. I told her I'd e-mail the guy for information like the tweet said to, but that I'd bet it's in London.

I e-mailed the guy and he e-mailed me back questions and details that didn't mention the word "London" anywhere (usually there's just a postcode or borough name hidden somewhere...) but yep, it was in London. So I wrote back to nicely suggest that they might like to include that fact in publicity for future such things because it saves the likes of me wasting their time (but I didn't say it like that, I said it in a nice way).

And I actually got a nicer reply than I expected: the guy said he'd only moved to London a couple of years ago and he'd gotten annoyed at how London-centric everything had been too. And he asked where I live since there are other things like this in other places.

We were e-mailing back and forth in between me getting ready for the day: I got dressed, walked the dog, all that kind of stuff. I was going to have a cup of tea with a friend, my new Bluetooth keyboard (Xmas present from Andrew) was arriving for my new tablet (birthday/Xmas present from [personal profile] mother_bones) was supposed to be arriving which I was looking forward to, I was going to the pub with the rest of the new WI committee that evening...it seemed like a nice enough day.

Just as I was getting to my friend's house, my phone pinged with an e-mail: it was from this Scope guy and it said something like "well actually we're looking for someone to do a media opportunity this afternoon, pre-record for the BBC for Monday, would you be interested?" I didn't look at it that closely, but I thought that all sounded okay so I wrote back yeah, sure and rang my friend's doorbell and didn't think much about it.

In the time it took me to drink about three cups of tea, I'd suddenly become this guy's favorite person because I think I'd solved a problem for them on pretty short notice. And this wasn't even going to be BBC radio like I'd been on a couple of times before, it was BBC Breakfast -- morning TV! They were going to talk about the "disability employment gap" and wanted a disabled person on who'd had trouble in, or getting, work. I was like hell yeah, I have opinions about that: If I had a job that didn't make me worse, it'd solve approximately all the problems in my life (while giving me a bunch of new ones, yes I know, but at least they'd be novelties).

As is the way of these things I was starting to hear slightly conflicting stuff and soon talking to a bunch of different people. After a few more e-mails and phone calls, what had changed to being a pre-record done over the weekend somewhere local to me (either my house or something like a cafe, and I was like...uh, yeah, cafe please, my house is awful), it suddenly became "right, I've got your address to tell the cameraman, he'll be on his way over really soon." I wasn't even home yet myself, I was still sitting on my friend's sofa when I heard that.

So I ran for a bus back from Reddish and on my way called Andrew and tried to explain. "He's coming here?" he said.

"I...guess so? I don't really know."

"But have you told him about our house?! Have you told him about Gary the Wonder Dog?! Why don't you go to Inspire instead?" All valid points, I felt, but there wasn't anything I could do about them.

I got home, needed a wee, but my phone rang again and the cameraman said he was leaving now so should be here in 30-45 minutes. I had enough time to wash my hair and put on a slightly-less-scruffy top. Andrew helped me pick everything up off the floor and furniture so it was at least possible for people to walk or sit down in our living room.

I was by this point anxiety-attack levels of anxious, though not exactly having an attack, and it was all about the state of me and the house rather than about the interview!

While I was waiting for the guy to show up, I talked to some Scope people about about this, what they'd like me to say if I could -- though they repeatedly emphasized that I should only say it if I actually thought it and not to worry if I didn't manage it. I think they were pretty grateful they'd found someone to do this and the guy I'd originally spoken to seemed to think it was as funny as I did that it'd turned out this way. "We're going to do this all backwards," he said, "because you'll do the interview and then I'll catch up with you and get details from you for our Stories project..."

And then the guy finally turned up and he was very nice. Since the dog, as always, went mental because someone had knocked on the door, I greeted him with "Sorry, I should've said we have a dog, I hope you're okay with dogs!" He was very okay, which was lucky really...or in another way, maybe not, because if he hadn't been maybe we could've gone to Inspire after all!

But then Gary wouldn't have ended up a TV star. But also nobody would see the piles of dirty dishes in my kitchen! "Swings and roundabouts," as the locals say.

Both of these things (dog and dishes, not swings or roundabouts) were used for "sequencing shots" -- the "look this is a normal person who does normal things!" kind of thing that's there to break up a talking-head interview, because really who wants to look at my stupid head for the whole two minutes or whatever they'll use.

I had to do everything twice -- play with Gary, put food in his bowl, pretend to wash one cup (so I guess at least if I look like I have a kitchen full of dirty dishes, I at least also look like I am actually going to do them!) -- so it could be filmed from different angles, and the whole thing seemed slightly surreal. I wasn't nervous about it because on some level I couldn't convince my brain it was really happening.

The guy was a bit self-conscious about all the faffing, messing with lights and doing things from different angles and whatnot, but I didn't mind at all because I was clearly a very small cog in a very big machine, and I could just wait to be told to do things and I didn't need to care if they were silly or confusing things. And it's not like they were difficult things. It was quite relaxing, actually!

Oh and as for what I talked about, I have basically no idea. My memory goes to shit when I'm anxious anyway. I do remember talking about Occupational Health being so shit when I started my NHS job, I hope that patronizing cow who tied my shoe for me hears herself being talked about on the telly, except I'm sure she doesn't remember it...). I probably talked for 15 minutes or so and they'll use two minutes of it and I have no idea which two minutes.

But you can all find out, if you want! It's apparently going to be on at ten to seven tomorrow morning, me pre-recorded with some employer in the studio saying no doubt that I am wrong about everything.

Anyway, what Scope asked me to mention is that there's a Government consultation going on into "helping disabled people find employment" but maybe we can convince them that the reasons we're not finding it are to do with employers disabling us rather than us just thinking life on benefits is so easy and nice that we can't be arsed getting a job... I'm going to try to write a response to the consultation, anyway, and would encourage any of my disabled chums to do so too. I'm happy to talk through or help anyone with that, if it'd help.
hollymath: (Default)
I also found this article on the unreadability of the internet interesting (partly because I actually think things like how many points of contrast there are between two colors is interesting...).
When you build a site and ignore what happens afterwards — when the values entered in code are translated into brightness and contrast depending on the settings of a physical screen — you’re avoiding the experience that you create. And when you design in perfect settings, with big, contrast-rich monitors, you blind yourself to users. To arbitrarily throw away contrast based on a fashion that “looks good on my perfect screen in my perfectly lit office” is abdicating designers’ responsibilities to the very people for whom they are designing.
Of course this is another time I was ahead of the curve; I've been using browser extensions for years to make web pages sufficiently readable for me. Here's what I said about them a while ago; I had reason to share this today and thought I might as well put it here too.
‎So my main browser is Firefox, and the extension I use for that is called Tranquility. https://addons.mozilla.org/en-GB/firefox/addon/tranquility-1/

Chrome I don't use as much for browsing any more, but that still has the extension I used to use for Firefox, it's called Readability. https://chrome.google.com/webstore/detail/readability/oknpjjbmpnndlpmnhmekjpocelpnlfdi?hl=en

Both of these are really good for getting rid of all the ads and stuff too. You can set font and size too, and you just get one lovely column of black text on a white background. Like the old days of the internet!

Tranquility is sometimes annoying for also taking away images you do want (photos that are part of the news story, etc) but I still find it's ‎worth it. It's very easy to toggle between "readable" and "original" modes so you can look at the diagrams or photos if need be with, overall, still less hassle than trying to parse modern Web pages. :)

And Tranquility does have the advantage of keeping the URL the same so it's easy to copy/share the link (Readability changes the URL when it changes the webpage, which just means you have to remember to change it back before you copy the link or something).
hollymath: (Default)
I really like this (except for the terrible headline, which I know isn't the writer's fault: we're partially sighted, not partially blind!).

My eye condition isn't degenerative like this person's is, but since I've still recently made the transition from "trying to pretend I'm a sighted person", about a year ago, reading all this was really powerful. I'm not used to seeing these experiences talked about. The recognition and identification feel really comforting.

I absolutely agree that not nearly enough is widely understood about who carries what cane and why, the huge variety of ways a person can have partial sight, and how best to interact with us. While my anxiety is a lot better when I'm using the cane because I'm not being held to a standard I can't reach, it is sometimes worse if I do anything that makes me seem "sighted," like reading or dodging an obstacle I couldn't find with my cane. I haven't had such negative experiences as I read about here, but I recognize them as something I have to be prepared for.

I spent all afternoon at the first meeting of the rebooted Visual Impairment Steering Group I'm now kinda leading, which was great but it was only supposed to last an hour and I'm exhausted now but it's only reaffirmed how much I want to teach sighted people how to be sighted.
hollymath: (Default)
Andrew's sister has called him to get help in filling out her PIP application.

At one point he told her, "Yeah, I know it's terrible to have to list everything you're bad at. This is basically the opposite of a job application: there you're trying to make yourself sound as good as possible..."
hollymath: (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: (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: (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: (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."

We.
Don't.
Bother.

No one.
Ever.
Asks.

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: (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...

Updates

May. 24th, 2016 08:10 pm
hollymath: (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: (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: (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.

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