This is one of those days, like the king's speech, when I have to pay attention to UK politics because of work, and I hate doing that!
After the "Autumn Statement" of the national government's upcoming budget, one of my colleagues asked about it, "What does everyone think, scores out of 10."
Another colleague replied, "I think I am in a state of mourning."
I broke my ankle and dislocated it. It needs surgery but that can't happen for some days yet. I finally got to go home late this evening.
So today I saw a link to this thing, which is more business-brain than I'd usually be interested in but this seemed so apropos for where my thoughts have been lately.
It starts with a vague anecdote about "a small group of leaders" gathering most of their people for two days of talking about "big changes to their organisation's mission."
The writer goes on, "These leaders were talkers. At the end of the second day of this, they were amped up and excited about the plans that had been hashed out." She contrasts these "talkers" with "writers":
The writers were on the whole befuddled and exhausted; they weren‘t sure what had been decided on, and when they tried to reflect on all that talking, it was a blur. They could feel the energy of the room was such that something exciting had happened but they didn‘t quite know what to think of it. They were uncertain if they had made themselves clear; they were uncertain of what they had wanted to make clear. They wondered if they were missing something, but they couldn‘t articulate what it was. They too sent thanks and thumbs up emojis, but they went home with a vague sense of dread.
I feel so seen here.
I do still think all the stuff I talked about yesterday plays a part too: disability, gender, race, class... But some of it is just personality or extro-/introversion or whatever too. There's more to it than this talker/writer binary (which the author does problematize a little too) but I do think this is a really interesting frame for me to use about work.
She says
In most orgs, talkers are overrepresented among the leadership [because] most of our models for leadership—meetings, town halls, presentations, interviews—privilege talkers...
The result is that a great many orgs have talkers at the top and writers down below, but because power obscures difference, the talkers are very rarely aware of this setup.
Power obscures difference is definitely one of the things I was fumbling around and spilling much more metaphorical ink trying and failing to say! Having such a succinct way to state something so prevalent in my life would already made this essay valuable to me, even if nothing else about it was.
The essay goes on with advice about what to do with this binary, but for me it was enough to stop here and just bask in having a situation I have been struggling to describe be explained so precisely.
What the leaders I observed did was optimize for their own mode of thinking.... In the course of that optimization, they effectively disenfranchised most of the writers among them. They left a lot of good brain power and potential alignment on the floor, and they didn‘t even realize it was there as they stepped over it on the way out the door.
I saw this because the author shared it on Mastodon, and I replied with my profuse thanks and one additional thought: I said "I'm frustrated at the ableism that's present in a talker-led society, even in groups that are for disabled people. And also, the talker ideal is less suitable without mitigations we rarely have in the ongoing global pandemic, so that's a disability justice issue as well." She called it "an astute observation," so that feels good anyway!
I am already disgusted by what we're calling "AI," what is actually scraping the language and art of human invention, ignoring copyright, and filtering that through the poorly-compensated labor of exploited people in a process so detrimental it causes similar long-term psychological impacts to that seen in content-moderators, consuming huge quantities of energy in the process...
As if I didn't have enough reasons to dislike it as implemented, here's another one, from someone talking about trying to depict his visibly disabled body via image generators:
Tech is not neutral. It can't be. It is always the sum total of human decisions, priorities, and tradeoffs, deployed to meet certain ends and desires, and particularly capitalistic interests. AI is far from being an exception to the rule. And in this case, any desire for image generation models to be able to represent me is going to butt heads with another incentive: the desire to avoid shocking users with body horror.
Successive model retrainings have made rendering humans much more accurate, and tighter restrictions on prompts have made it much harder to generate body horror, even intentionally. As a consequence, non-normative bodies are also incredibly difficult to generate, even when the engine is fed hyperspecific prompts.
It's not just that the training sets simply don't have examples of people who look like me. It's that the system is now explicitly engineered to resist imagining me.
…Hey, is now a good a time to mention that in an effort to "create a welcoming and inclusive community for all users," the Midjourney Community Guidelines consider "deformed bodies" a form of gore, and thus forbidden?
We got to pick him up mid-afternoon.
My morning had been taken up with a frustrating work task that had to be done by noon, so I missed another (arbitrary and not super consequential, but still who says "I'll submit this at noon on Wednesday" and then has actually done it by the time I can email them at 12:44!) deadline.
Not long after, though, we got the call from the hospital saying we could come pick up Gary. ![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
mother_bones was cracking up on the phone and saying stuff like "oh dear" and "he's like that with everyone, don't worry." Apparently she was being told things like "He doesn't like being touched, does he?" (understatement of the century) and "he hasn't eaten anything" (not unusual for him) "but I think that's because he's in hospital and he thinks we're trying to kill him." Yeah, they got him figured out.
Always a good sign when your boyfriend is like "do you want to add this to the list of things you're complaining to Northern about?" when it's not even 10am and you're still in Manchester.
I was so angry I would've done some shouting if there had been time. But there wasn't. That was part of the problem...
So: this morning D and I were traveling to Bournemouth. For a few days, so we've got luggage. We're tired. I'm already incredibly uncomfortably because it's that kind of weather where you get rained on and you get sweaty. We found somewhere quiet and ventilated (thus, blessedly cool) enough to take our masks off and put down the bags.
D hasn't had breakfast, and we'll need lunch on the train. He offers to go to a shop in the station, I can wait with the stuff so we don't have to drag everything with us. Good plan!
D comes back way too soon. He says "they won't let me through without your railcard."
I was immediately livid.
To get off the platforms and on to the station, he had to have his ticket checked. It says it's connected to a Disabled Person's Railcard because those entitle the disabled person to a companion at the same reduced fare. Staff on the train regularly ask to see the railcard when they check the tickets and they are perfectly entitled to do so.
But it never happens on the platform. I have never in many years of using one been asked to show my railcard while I'm trying to get to or from the platform in a train station (and I don't always use my cane so I'm not always visibly disabled). It would be a huge burden to do so at the very least (it's very difficult to faff with fiddly things like wallets/bags/phone when one hand is taken up with your cane! I have to stop walking to use my phone, put a mask on/take it off, do anything that requires my hands). And it's no exaggeration to say that a demand to see my railcard in this context could be a hazard at busy times when the area might be crowded and people might be in a rush behind you.
Railcards are offered in digital form as well as a physical card these days. Because when I renewed mine I needed it in a hurry, I had to get the digital one which is just an app on your phone that shows a QR code. So for D to show my railcard, I'd have to give him my phone. I trust him with it, but that would leave me without it if one of us needed to contact the other. We had a tight schedule for getting food and making it to our train, anything going wrong in the next 15 minutes would wreck a whole day's travel and set me up badly for my early start tomorrow at this work-related conference I'm here for. I really didn't want to give up my phone, my connection to the world, at such a time.
Another thing that made me mad was how arbitrary this is. If D had tried to get through to the concourse via one of the platforms that has automated ticket barriers, the railcard couldn't have been checked. He'd clearly come off a train to be coming from the platforms, so the job of checking the railcard was the responsibility of train staff, not this random person on the platform.
All this flashed through my head in a millisecond and I was angry. I jumped up and we both, with all the bags, went all the way down to the ticket checkers. D aimed for the same one as last time. When he showed her his ticket she looked at us both like she was losing control of this situation and said "which of you has the railcard?"
"I do," I said, glaring. I hadn't even been able to get my ticket out, it was tucked away deep in my wallet deep in a pocket and I now had to hold my white cane in one hand and pull my wheelie suitcase with the other.
She didn't challenge me, didn't say another word to us but just turned to other people. It was kinda crowded. She didn't really need to see my railcard. She saw a visible sign of my disability and decided to let it go. It makes me so mad because there are so many disabilities that don't come with such inarguable evidence as a white cane. Most people with sight loss don't even have one! So many disabilities are invisible. Clearly she only challenged D because he "didn't look disabled." And that's not on.
Not only is anyone totally capable of having an invisible disability, it's also totally valid to have the disabled person's companion go do chores like this while the disabled person rests! That's precisely the kind of situation where I really benefit from a companion traveling with me! It's a potential downside of the digital railcard that I can't give it to said companion without losing access to my whole phone (and without them needing my password etc. to unlock the phone, which would be a faff to teach them in a time-sensitive situation like this even if that was something I wanted to do). But it's all the more reason for station staff not to challenge people when they're just trying to buy food and get back on another train.
They should be able to trust their fellow staff on the inbound train. I don't understand what this adds to any "revenue protection" or whatever justification she would've had. I'm worried the justification would have been a cover for the real motivation: the pernicious worry in this country that someone, somewhere, might have something they don't "deserve."
I don't read stuff written about blind people directed for a general audience very often, and when I do it's only when I feel like seeing how terrible it is.
This is such a terrible article. It's very binarist about blindness/sightedness, it's very sighted-gaze, it's very dull.
Until the last few sentences, which I wish had citations so I could use them for my work, which is trying to make transport and streets better for blind people.
Research has found that blind people have more dreams about travel that involve unfortunate circumstances. Some of these dreams could potentially be considered nightmares. One hypothesis is that the nightmare content may mirror the difficulties blind people face while getting around in their waking life.
Huh. Until the pandemic, most of my nightmares were about travel, usually on planes. But I'm only one person, one data point.
I wonder if there's any truth to the barriers we experience in our journeys are so profound that they populate our nightmares.
I've been thinking about this for many days, since I first saw this terrible article.
I saw a link to this article the other day, about the first Black blind barrister in the UK. She's a woman too, which is why she called this a triple-glazed glass ceiling.
I'm happy for her! But the way she's talked about is so interesting.
Of course this article goes into the details of her condition, which is yet another one I hadn't heard of and leaves me not understanding her any more than I did before (which is what always happens even if it is one I've heard of and that's one reason I hate the fixation on clinical diagnoses whenever blind people want to talk about ourselves and our experiences).
And it mentions a couple of times that Ms. Inaba had to use braille to complete her degree. Like it's such a problem or a chore, it sounds like they're saying "she has had braille inflicted upon her." It's big "confined to a wheelchair" vibes, and it's annoying and ableist for the same reasons. It says "Inaba had to use Braille and help from tutors and friends to keep up with her studies," which at first seemed annoyingly exoticizing because almost everyone uses tutors and friends to get through university. But then I saw the details:
But she said it took seven months for her university to obtain one of her two key study texts so she could read it using her computer, and five months for the other, and her Braille screen also missed huge chunks of material due to pictures and tables in the books.
She got through most of her studies by making her own Braille materials from her lecture notes, or from friends reading books to her, and the university also organised one-on-one tuition to support her when the lack of books held her back. "I was spending more time preparing my own learning materials than I was studying," she added.
"I was hospitalised because I kept fainting in October 2019 because I'd been functioning on about three hours sleep a night for two years."
Her friends were reading textbooks for her, I can't imagine reading out a law textbook is a lot of fun. It's so awful that it came to that rather than them having the appropriate formats in place for Inaba, but her friends sound awesome. And the tutor wasn't a regular course tutor but someone hired by the uni to work with her one-on-one, to help mitigate their failings.
And needing to spend more time preparing my own learning materials than actually learning is so fucking familiar to me and other blind students and academics -- I still think of the Australian lecturer who estimated she lost 25 hours a week to making up for inaccessibility in her work.
She said: "I'm very proud but I do wish it had all gone smoothly. I feel because of disabled access problems my results aren't a true reflection of my ability."
I don't doubt it. And this is on top of racism and sexism.
"I reckon as a black person I have to work ten times harder than others just to be accepted by society. Before I can see a client I have to prove I'm a lawyer and justify my need for my specialist equipment. If I was an older white man who can see my professional life would be so much easier."
When she goes to visit clients in prison, staff always assume she's visiting a family member, because she is Black. She finishes
"I have to accept I might never be competing on a level playing field - that's hard. People from minority groups training to do this will face discrimination, hopefully that will get easier with time."
I really love how well she makes these points and I love that even UK tabloid newspapers printed some of them. (I tried to find how she was talked about elsewhere and saw similarly respectful-and-only-moderately-ableist articles about her in the Mail and Mirror and stuff.)
I snuck out of work as soon as I could because I have to go to a bank to try to get them to accept/register paperwork that I have mailed them at least twice and once, more than a year ago, also taken into this bank, and was told that they and my ID and my proof of address had all been scanned and sent off to the relevant team, only to find out that somehow they'd gotten lost.
We got the bus into town and got to the bank at 4:40. Turns out even big city-centre high street bank branches can close at 4:30 these days. We were ten minutes too late.
My instinct at times like that is to try to find something else nice to do, to make the trip worth it. But it had already started to rain on us, so it wasn't good weather for sitting outside to grab a drink, and there's still an unregulated pandemic that keeps diffrentcolours and I from going inside to eat or drink. Plus I had to be back for a work-adjacent thing at 6.
We waited forever, increasingly soggy in rain I hadn't dressed for, at the bus stop. Finally our bus appeared... and stopped at the first of the two bus stops in the vicinity, so people rushed back toward it as others were getting off. But before we could reach it, the bus zoomed off -- not to the correct stop, just zoomed off all together.
Times like this, I miss having a Twitter account to complain to the bus company with.
Soon after, a bus appeared that doesn't quite go as close to our house, and takes longer to get there, but getting it seemed worth it to get out of the rain. D stepped on the bus and I was a bit behind him, still trying to put my mask back on (I might have just left it on if it hadn't been raining, but they're both less comfortable and less effective when they're wet) and get it adjusted with respect to my glasses, etc.etc. As I was doing this, an older white man who'd been standing near us nudged my arm and said "You go on first." I ignored him, because I wasn't ready to get on the bus yet; I was struggling with one of the mask's ear loops. He didn't nudge my upper arm the second time; he grabbed at it and clutched it.
Now, among other things, I take my glasses off to put my mask on -- I have learned it fits better to go mask first then glasses. So I wasn't wearing them yet when this guy grabbed me, even though I had a pretty good warning that he did because he was right next to me and he'd already touched me. So I wasn't startled or even particularly afraid. But I was feeling extra vulnerable, because of the lack of glasses. And I'd had this miserable pointless trip at the end of a long day, I was uncomfortable, I should've already been on a bus that didn't stop for some inexplicable reason, I was going to be late for the next thing I had to do and I didn't want him to touch me.
So I said "You shouldn't touch strangers like this! You shouldn't grab people who can't see you." I can't remember the words exactly, but it was something very close to that. I fumbled my glasses on to my face and lurched on to the bus. My flouncing off was ruined by the fact that, of course, as soon as I'd gone two steps I had to stop to scan my bus pass. As I did, he said to my back the worst possible thing:
"I was helping!"
"No you weren't!" I screamed. Really screamed at him, I totally lost my temper at that point. I think I said some more stuff too but I don't remember, I just remember doing it as loud as I could. The unwanted "help" from abled people, in fact ranging from unpleasant to triggering to actively harmful, is so common among disabled people that it has its own words: we call it "helpiness" (like "truthiness," yes) or "hlep," the misspelling indicating something of how ineffective or unwelcome it is.
I wasn't harmed; he hadn't grabbed me hard enough to cause me physical injury and he hadn't either started or stopped me from moving which is a big concern here too. I was not mentally okay though. I'd just told D as we walked to the bus stop that I was feeling wrung-out and exhausted, still from last night's panic attack. I woke up this morning thinking I feel like I had the flu, just everything hurt, and that was from the panic attack too.
I was at a low ebb of mental and emotional resilience too. I wouldn't normally lash out at a stranger like that, especially a white man because their tempers can get violent and they can get away with it the most in public.
He got on the bus eventually, but by then I was sitting down and D had his arm around me, squeezing me tight either to show this guy that I had backup or to reassure me, I don't know. But nothing else happened.
I felt bad almost immediately. I wouldn't blame any disabled person for reacting like I did but I don't actually want to do that myself. A whole bunch of people saw that and I'm not embarrassed or anything but I worry about how many of them now think that blind people are all unhinged and no one can be nice to them. I know that shouldn't be how it works, I'm not the ambassador for all blind/disabled people, and that's important but also I know how the world does work and it's not ideal.
It didn't actually help anything for me to scream at a stranger: no one felt better for it.
During a work thing today, a blind person said that if he was given the choice of winning the lottery or getting his sight back, he'd take the money; he said that'd have a much more transformative effect on his life. At the time I figured I'd absolutely say the same. I've never been able to see any better than I do now and mostly I can't imagine what life would be if I could. I don't mind; I don't even think about it. But on the bus home I thought about how none of this would have happened if I wasn't disabled.
I wouldn't have had to go to the bank! That's for a disabled group I volunteer with. I wouldn't have found my day at work quite so exhausting, at least not in the ways I did. I wouldn't have had a panic attack yesterday that I was still feeling the after-effects of at this time. I wouldn't have stood out at the bus stop and could've put my mask on in peace. Hell I might not even had glasses to juggle it around! (Though sight that's poor but can be correctable by glasses doesn't count as a disability.)
But really fixing all those issues doesn't require me to not be disabled. They're social barriers, not ones intrinsic to my impairment. Just like the bank losing my paperwork repeatedly doesn't need to happen, none of this ableist bullshit needs to happen.
Dear Erik,It took me longer than five minutes to complete it. And not just because I was tipsy and typing on my phone. I told the survey this whole story.
You recently got in touch with us, and your issue was given the reference number xxx.
We’d love to know how we could improve our webform and website, so please could you complete a short survey about your experience using it.
There are a maximum of six questions and the survey should take less than 5 minutes to complete.
The most surprising thing about this story of a Sainsburys manager abusing a guy with a guide dog and threatening to call the police on him is that the guy is white. I saw a version of this story before I got to the link and was 100% picturing a Black man.
How sad if his daughter's anticipating her future here too.
(Sorry for the Metro link. But, perhaps usefully, note they've put this story in the "animals" category, so the related stories are about a shark bite and abuse of a seagull and a blind dog, rather than this being a story about people having their rights threatened.)
Another thing I'd like to point out, I think Mr. Valentine did a decent job of it but I'm not sure how well this comes across to sighted people: this is the store he and his dog have been trained to use. It's the only one. If he doesn't feel safe there, he's either stuck going there anyway (and he for sure is in the short term because this next option takes a lot of time and energy) or he and his dog have to get training -- which is in short supply because it takes expert skills! -- on a new route. If indeed there even is another suitable (accessible, well-located) store.
There's just so much that makes you vulnerable, as a blind person. People will read this and go "oh he wasn't kicked out, and the store apologized," but I can't help but think of the aftermath...both immediate (what did he do ahout dinner that night?!) and long-term: he's stuck with this Sainsburys! What was it like the next time he went in? Has this media attention helped or made it worse? He's stuck there, either way.
The hospital appointment went fine in that L successfully had his test done.
But it did not go fine in that we're probably going to be making a formal ( complaint )
My friend maloki, who lived here before I did, is applying for PIP. It's her first time. (She's not newly disabled, but she is relatively new to the UK.) I said I'd help.
That help took the form of answering the odd question through the last month, my answers copied and pasted from the best guidance I know (which was also the first thing I'd sent her), and then spending the weekend in video calls while typing frantically into shared documents (because Mal isn't local any more, so we did this remotely).
I woke up at 6:30 yesterday and 6 today, and we started early both mornings (this had the unintended consequence, thanks to some sunny weather, of showing me what the room I'll be working in for my new job is like on sunny summer mornings! I basked in the heat; I hope my hours will be flexible enough to allow me to get some work done that early -- that time of day is usually pretty good for me anyway, but it's an added bonus to have early-morning sunshine beaming on me).
I was out yesterday afternoon in the pub and this afternoon watching baseball in the park.
Other than that, we worked on this all day. It had to be submitted today. We finished it at about 9pm. As I said when I had to do this myself a few months ago, the cruelty is the point. The precarity is the point. Watching this happen to someone new to it has been tough. I kept saying I felt like I was kicking a puppy. I was there to break her spirit.
We had fun chatting -- since she moved away and there's still a pandemic, I've hardly seen her in the last year and a half after seeing her every weekend before that -- but it was intense. I was exhausted by the time we finished yesterday evening and made only the most perfunctory dinner. Today we just got takeaway. Which I could barely even eat.
I'm so proud of her, facing up to internalized ableism (and external ableism directed at her by the PIP application itself!) and some things that it's easy and understandable to be avoidant about. She did good. I really hope she gets it but I already told her to brace herself to have to appeal.
When we finished I still had to Skype my parents, because it's Sunday evening. And by the time I said goodbye to them it was almost ten, which they thought was pretty late for me but my insomnia is so bad I just do not get sleepy lately. I am tired! My eyes are sore, my head hurts, I'm mixing up my words or forgetting them altogether...I have every other symptom of tiredness but I cannot sleep lately. Five hours of sleep is a great night. I'm used to insomnia but this is brutal.
So when my mom concernedly said "I suppose you have to go to work early tomorrow?" I was relieved to tell her she was wrong. My dad was telling her too. "Someone else does the mornings! She turns up at lunchtime!" He remembers all this stuff, Mom never will, heh. I assured her that Dad was right, I did not have to get up early for work.
I closed my laptop a minute later, flopped into a big chair with the rest of the household (Gary sleeping on another chair), and... right about then got a message from one of the guys I work for. He had overlooked an important hospital appointment. It's tomorrow morning, it's some distance away, and mornings are very difficult for him so he'll need to be ready early and that'll need a lot of help from me. He said he'd understand if I couldn't do it at such short notice, but...I can. I don't want to! But I can.
I would've planned my weekend very differently if I'd known that I was going to have an early start and a long day at work tomorrow.
But, that would've meant either giving up on the pub yesterday or baseball today. I would've had to miss some fun stuff to have more rest. And the fun stuff was good for me.
So it's okay. I will be fine. If I couldn't help him I would've had to reschedule the appointment and that would mean it'd be after I leave this job (at the end of this week), and I flatter myself that he's better off with help from me at this point, far along a path of investigating a chronic condition, than he is having it as a trial-by-fire for his (likely?) new PA, whenever the new PA can start.
We can do this! I'll be fine. I just wish I could expect more than five hours of sleep between now and then.
baggyeyes