Sometimes it's better to light a flamethrower than curse the darkness

I had a pretty dispiriting conversation with my parents this evening.

Whenever I think "wow I'm shit at speaking up when I should," I hope I remember how far I've come.

My mom won't argue with the people in her life who persist in Trump support despite living in Minnesota in 2026. "We just don't talk about politics," I remember hearing this when I was growing up (once or twice; one didn't even need to talk about not talking about politics very often), and it seems so nonsensical as well as enraging these days.

And when she told me about a parent being ableist toward his young son, after said child's disability had been explicitly compared to mine... She was talking to the parents and made that connection herself, saying that how they described his sight reminded her of me, which got the mom to ask if I'd ever "had to" use braille. At this point I was wincing a little, she made it sound like an emergency plan I didn't have to resort to (when actually I taught myself (by sight, not touch) Grade 1 braille when I was 11 because I so desperately wanted to learn it), but whatever. Mom replied, accurately, that I did not learn braille. The kid's mom said that she'd asked because they as his parents had been told braille might be relevant to their child, and I guess here the kid's dad interrupted their conversation to say "absolutely not, he will never do that."

I was so upset. I shouted "that's horrible!"

Mom was upset...with my outburst. "I'm only telling you what he said," she told me, clearly not interested when I tried to explain why I thought this is horrible.

I've been having a bad-brain time anyway, but the idea that there are people out there who insist that their visually impaired kid will never learn braille is bad enough... and it stings to see that my mom isn't even interested in advocating otherwise even when she had been explicitly treated like an expert by the kid's mom by drawing this parallel between my condition and his.

My mom isn't really much of an expert on my condition -- she told me that people in her church prayed for me to stop being blind when I was a baby and I'm a miracle; Wikipedia tells me it's normal for people born with my condition to acquire some sight by the time we're five years old. And her own ableism was baked into the conversation: she's intensely uncomfortable with wheelchair users unless they are expected to "walk again some day" and she was just so paternalistic about the kid that even modeling better reactions (which is usually all I can do when my parents are like this) didn't feel good enough for me.

It just felt like the last straw: a difficult weekend, I accidentally broke the fastening on my current-favorite glasses chain while I was trying to clean glasses that always seem to be dirty lately, I have realized only tonight that all my train journeys this coming week will be even more complicated because Manchester Piccadilly is effectively closed... D kindly tried to fix a problem with my phone not sending e-mail only for it to confound him, leaving him frustrated and confused.

And now it's past my bedtime? I somehow have to go to sleep when I'm so dejected? Bah.

Yesterday was a delight. I got tipsy around some friends of friends, one of those being the person who always remembers to introduce herself and where she saw me last. She tells me when things are happening to the side of me where I can't see.

It turns out she works in a special education needs school, specifically in a class for kids with multiple sensory impairments, so she's like "oh this is nothing."

Access intimacy plus alcohol might be a hell of a drug, but then I don't feel I overstepped when she's the one who told me I must have a really good binder because she did not believe I have the cup size I told her I do, heh. The kind of conversation that'd be wildly unlikely and inappropriate in most contexts can be so fun when it finds the right one.

Happy Nystagmus Awareness Day. I wrote a kind of FAQ about nystagmus a while ago.

I had to explain the basics of what nystagmus is to the assessor who did my PIP assessment the other day. (They used to at least tell you they were a physio or a nurse or whatever, now they don't even bother letting on how unqualified they are to be assessing your particular condition.)

Oh speaking of, I got a phone call today, from an 800 number I'd been ignoring for a few days because it never left a message or anything. I mostly answered it by accident today. And it turned out to be from Maximus or whichever shitty entity the DWP have outsourced their assessments to in my region, saying they need more information from me so now I have to talk to them on the phone on Monday! Ugh. I've never had this happen before.

Got a text this morning saying that I need to book a blood test before I get more meds too. Ugh! More needles and more lectures about being fat. Not a fun day for admin relating to having a body!

According to this, and a new book I maybe have to read now, a gay pioneer in the UK was blind.

In 1960, seven years before the law in the UK changed to permit sex between men, he had written to the national press declaring himself to be gay. Roger believed that the only way to change public opinion about homosexuals was for them to take control of the gay rights movement – and this required them to unashamedly identify themselves on the national stage. But nobody else had been willing to do it.

It's because of his blindness that this person had to come in to his life: an Oxford student, also gay, who could be trusted to read his papers and write and generally be a kind of personal assistant.

To gay when it was illegal, and then to be blind, required a lot of access intimacy when everything was still on paper.

The article ends:

In the years since, it has often led me to wonder how many other quiet revolutionaries live among us, ready to share their stories, if only we knock on their doors.

So many. I'm sure of it.

The survey also found that most Britons (53%) don’t consider listening to an audiobook to be equivalent to having read that same book. Just 29% said that they think of listening to audiobooks to be the same as reading...

Okay.

I don't think it's a very well-worded question.

I don't think audiobooks are "the same" because I prefer to read some kinds of books as audio and others as ebooks.

I think a good narrator can add a lot to a book. (I can't imagine the Murderbot series without Kevin R. Free's amazing narration.

I also love Scott Brick as an audiobook reader, he's a big reason that a book about salt has become a comfort re-read for me.I can't imagine the Murderbot series without Kevin R. Free's amazing narration. I also love Scott Brick as an audiobook reader, he's a big reason that a book about salt has become a comfort re-read for me. Both Nigel Planer and Stephen Briggs make Terry Pratchett books better.)

But I don't think that's what people mean here.

I think at least some of those people are saying that audiobooks aren't as good as reading. They're not "real" reading.

And I think that because people regularly say that audiobooks "don't count."

Some of this is the same kind of snobbishness that doesn't even "count" ebooks as "real."

But some of it is specifically ableism.

The article keeps referring to books "read or listened to." The implication is that these aren't the same. Listening isn't reading.

I actually wonder what would happen if braille was explicitly included. Like we don't say that braille users touched a book, we still say they read it.

Going to an in-person work meeting this afternoon was my first time on an official Bee Network bus (they just got to my part of the city a week or two ago). Immediately, the driver has already given me absolutely brilliant service.

When I got on, he asked where I was getting off and when I told him he said there's a diversion today and then said where I should get off instead! This is absolutely the best I could hope for as a blind bus passenger, I'm so impressed with that driver.

Also, the audio announcements have kicked in (I think they were missing for the first stop or two after I got on, but I might have just missed them?). First hearing that "this is a [number] service to [destination]" automatic announcement had a surprisingly strong effect on me: I actually jumped a little in my seat and then felt weirdly emotional.

Even when I don't "need" them because this is my most familiar route, the audio announcements feel like a big deal. I'm always talking about their importance at work so you'd think I wouldn't be surprised to feel like they're important, yet here I was.

In my own city, not a stressful trip to That London where everything is unfamiliar and I'm anxiously waiting for one stop that I hope sounds like the one I've memorized. There is infrastructure here to support me, I'm not on my own. That's an incredible feeling.

After I came home from yesterday's work trip -- going in to town after dark (so, 5pm) to look at a streetlight -- I realized I probably don't need my heavy awkward white cane tailored for hiking off-road trials for everyday use any more.

My ankle feels fine almost all the time now and doesn't need the kind of support I was using it for these last nine months.

I put it away with the others (I have four or five canes now, for reasons), swapped it for the fanciest one to celebrate the milestone.

(The fanciest one is the "no jab" cane, which has a big spring inside so when you run into some uneven pavement or some other obstacle, it doesn't wrench your wrist or jab you in the belly (bruises are common among new long cane users...and probably old ones too). It has a fancy red leather handle too, (probably to help justify its cost!).

And last night I added some rainbow tape to it -- only the bottom segment so far; I like a lot of white on my white canes but also I like the idea of making it look more queer.

I used it on today's work trip -- to Liverpool and back -- and it was fine.

I woke myself up about an hour and a half before my alarm with a splitting headache and chest pain so bad I couldn't breathe properly.

(I'd actually incorporated the chest pain in to the dream I was having, always a great sign.)

I was just about able to make myself sit up and it went away quickly. I was sure right away (once I stopped believing the inaccurate justification my dream made up for the chest pain) that it was anxiety induced, and that did seem to be the case; the headache felt like a blood pressure spike and almost all the chest pain faded reassuringly quickly.

No idea what that was about! The first thing I thought of when I was trying to figure this out was I actually thought yesterday went pretty okay! And I wasn't having a bad or even stressful dream; I was dreaming that D and I were doing some minor repairs on "our" shed (bigger than our real one, but it was ours in the dream and thus full of all the familiar "oh yeah that door has never worked quite right" and "this isn't ideal but we can bodge it for now" feelings I associate with homeownership...a remarkably dull dream, definitely not an anxious one!).

I do get chest pain and slight difficulty breathing with my anxiety on a regular but not frequent basis, and I've woken up with chest pain before, but nothing like this. Really weird but since it's never happened before I'm hoping it'll stay just One of Those Weird Things About Having a Body.

I didn't get back to sleep and I had a lot to do this morning so I soon got up. Got dressed, brushed teeth, went downstairs, started on chores and breakfast and work...

The day seemed pretty normal until V got up.

They found both of us downstairs and asked us to check our shoes.

For all I value the social model "people aren't disabled by their impairments"...Sometimes we are. Sometimes I just. don't. see things. And that can cause problems, for me and others!

It did this morning. V cleaned up what I'd unknowingly tracked all over upstairs. But it was rough on the spoon levels and mood of the whole household; D and I both felt bad for not noticing until V started their day with this unpleasant task.

I was proud of myself for not spiraling (it was close!), for sticking to a proportionate amount of frustration and keeping it aimed at the situation and not at my blindness.

It was hard not to spiral, I have decades of practice at it and I'm really good at it!

It helped that I could express these feelings to the others without getting toxic positivity in response too: It's okay to be disappointed and frustrated. It's okay to be mad at my visual impairment and the trouble it can cause sometimes.

And then, near the end of this mentally and emotionally draining time, I realized it was the (arbitrarily chosen, when I booked it!) time for my covid shot! So I went to do that (it was fine, I was brave about the needle!) and I can now add physical reasons to the list of why I want to go to bed at 7:30.

I really had to push myself to work this afternoon, but I'm glad I did. If I hadn't gotten as much done as I did eventually manage today, I'd have only given myself a lot more stress tomorrow, and I don't need that when Thursday will already be a stressful work day (I have to go to London to do a talk).

Next weekend D and I are going to Electromagnetic Field, "a non-profit UK camping festival for those with an inquisitive mind or an interest in making things: hackers, geeks, scientists, engineers, artists, and crafters." We have friends who go/have gone, and D has been interested in this since the last one -- it has happened every other year.

About three weeks ago, we were invited to look at the list of workshops, talks and other suchlike that people had volunteered to give. Showing an interest at that point would help organizers prioritize and allocate space to things, so I was keen to help out, especially as someone only interested in the less-techie things.

I spent maybe ten or fifteen minutes on the website after dinner, and by the end of it I had vertigo, the beginning of a migraine, and had to go to bed at like 7:30 that evening.

All because the website only has dark mode. This is what happens when I try to use dark themes.

I was really surprised, at first, that such a nerd thing didn't have any other options. But then I shouldn't have been surprised; my "favorite" example of how light themes are treated is in how Discord explained their approach to theirs:

Even within our office, it was hard to find more than one or two actual light theme users. Our small team of designers didn’t design with it in mind when creating new features. It became an afterthought. Testing on light theme was rare, and considered a chore.

It eventually became a Discord community inside joke that light theme was bad and you were bad for using it.

(That post is almost five years old and it was written to announce the new golden age of light theme; I started using Discord after that and I still hate it, haha. But it's amazing to see how much worse it was! The sidebar was still dark! Because no one could need to read those words too! The contrast is terrible! If you love dark so much why is the text medium-grey?! The fonts are so thin! Fonts are the thing that shouldn't be light even in light mode! (Wow that link is from 2016, read it when it was new, I've been referring to it ever since, and the problem still exists!))

D kindly emailed EMF to ask about a light mode for the website at that time. He never got any response.

Yesterday and today we've been sent emails with a much more detailed schedule and a request to sign up for things by Wednesday. I idly clicked on the link and when I saw the website open I panicked at the sight of it and quickly closed the tab again. That's when I asked D if he'd had a reply to his email. He hadn't, so he opened am issue on their github, explaining that the lack of a light mode means I'm unable to engage with or contribute to EMF. This quickly got a reply, but not an encouraging one.

Thanks for the feedback! Unfortunately adding a different colour theme is quite a lot of work - we certainly won't have time to add it for this event, and I don't think we can really commit to maintaining two colour themes in the long term at this point either.

For what it's worth, the website does meet the WCAG guidelines for minimum contrast (with one or two exceptions I just spotted and will try to get fixed). Not trying to diminish your partner's experience here, but we do take this seriously.

Personally I think the light-on-dark design is getting a bit tired and my preference is to try and move towards a dark-on-light theme for our next redesign. So we will definitely take this into account then.

Neither of us know anything about web development, but I'm not used to hearing that it's prohibitively difficult to have light and dark modes...and indeed an online pal has confirmed for that it shouldn't be, for what that's worth.

It all seems overly defensive to me. Mentioning the WCAG standards for color contrast felt off; I never mentioned problems with the contrast. It does actually matter what the colors are, as well! Combined with "not to diminish [my] problems, in the midst of absolutely diminishing my problems, it was just not great.

I'm sure from this person's perspective it looks like "someone waited until the last minute to complain, we can't overhaul everything in a few days..." which I get makes me sound like an asshole. Especially when this is all done by volunteers. But it's frustrating because a few days before the event is when I've been asked to interact with the website. Previously I'd sort of ignored it and gotten my information through the sighted person I'm going with. Which is not great, but that kind of thing all disabled people will recognize because that happens a lot!

D, bless him, was willing to brush off his rudimentary CSS skills and bodge something together that I (and anyone else who wants a light mode and doesn't care about the aesthetics too much) can use. He had a briefly frustrating but apparently educational afternoon figuring out how to make that happen!

I got an e-mail the other day, followup on a survey I'd taken part in, that has apparently led to this scientific paper and this writeup for us non-experts

I barely remember doing it; I'm most likely to have participated because they were interested in how/if hyperphantasia or aphantasia are affected by visual impairments. I don't feel like I have a strong visual imagination and imagine that must be related to me not having strong visual signals at all. But I am far from aphantasic either -- or so I feel confident in saying because Andrew had it and how he described it seemed very different from my experience. But then I find it hard to distinguish this from my spatial reasoning (abnormally good for "my gender" when it was tested in school), sense of direction, and memory. I was better than my parents at those "Concentration" type games where you turn over two cards and see if they match, when I was like three or four. They were impressed but I think it's just how my brain deals with not being able to see very well: after I've been someplace once, I'm likely to have a pretty good idea of the path I took to and from so I am so much more relaxed any subsequent times.

This kind of spatial acuity does seem to be the other kind of hyperphantasia talked about here: "an enhanced ability to picture the orientation of different items relative to one another and perform mental rotations" and it also mentions a good sense of direction. I don't know if I have that to a "hyper-" worthy degree, and if I did I'm sure it'd be because of other parts of my brain chipping in to make up for the shitty signal my visual cortex gets -- the one MRI I had wasn't related to my sight but since if its about anything below your head, your head is also in the tube, and that meant the first thing the consultant said about it was that my visual cortex is both bigger and fuzzier than usual, which I presume is what this "let's all pitch in and help out" coping mechanism has led to. Having been born with my visual impairment, my brain developed with it as a constant factor. I do wonder what that does to the aphantasia/hyperphantasia spectrum.

Anyway all that is incidental. It's always cool to get to help with a science!