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

Today my online pal Ri, in the Netherlands, said

My sister is going to the MECFS protest in Den Haag today, on my behalf. She has a piece of cartbord and is asking me what to write on it.
Any ideas?

I suggested "Don't forget the people you don't see."

(I think about this a lot, at every protest I'm at.)

Their sister chose this from the suggestions Ri made. They shared a photo their sister took. Written on the cardboard is:

Vergeet de mensen die je niet ziet niet.
- Ri, ME sinds 2012, bedbound sinds 2021

Ri also gave the English translation:

Don't forget the people you don't see.
- Ri, ME since 2012, bedbound since 2021.

Vergeet and Niet (forgot and not) are bolder and bigger than the other words.

A quiet day. I didn't sleep so I didn't feel very ambitious this morning. D had to work so I was happy to keep quiet and admire him at the kitchen table with his computer glasses and his headset on. At home he works in his own little room with his back to the door so it was kinda fun to just see him at work. Once he did the finger-snap/finger-guns thing that I recognize as meaning he's managed to do something satisfying on the computer; that was nice to see.

This afternoon V and I went for a little walk around: to An Lanntair ("The Lighthouse," an arts centre) where we bought fridge magnets and socks and admired sculptures wrapped in the distinctive red stripey foil from Tunnocks teacakes, how Scottish can you get. Then on to the sporting goods store, where I bought a t-shirt with a cute line drawing of blackhouses on it; it says "Western Isles." We admired them in the window the other day when the store was closed. They have one with a black pudding too but that isn't nearly as well-drawn or as appealing to me.

We went to Argos quickly to get a hand pump for the tires on V's new rollator, which turned up not long before we left home so this is its first outing. They're very happy with it as the bog-standard one they had before wasn't suited to their needs and caused almost as much pain to use as it alleviated. But one of the things that makes this one better is that it has pneumatic tires, rather than hard rubber ones; they'll absorb some of the shock rather than transferring it directly to poor V's arms. But we hadn't had a chance to pump up the tires before we left and V thought one of them needed it, hence the cheap pump. At home we have an automatic thing that we can use to pump up car and bike tires but we didn't bring it. Once we had the pump, V sat down on a bench outside Argos and I attempted to inflate the tires. They were all in pitiful condition and I marveled that the thing had been as useful for V as it has been. I ended up having to crawl around and just sit on the cool paving slabs to connect the pump, ha. Right there on the high street, I bet we'll be the talk of the town. I know how little it takes to do that in a small town -- I didn't realize quite how small but I just looked it up on Wikipedia and it's under seven thousand people. I feel like I've run into all of them the three times I've been at Tesco since we got here.

We failed to find the temporary location of a store that is run by someone from Minnesota who ended up here, which is the one thing remaining that the others have mentioned really hoping I get to see while I'm here. We have better intel now on exactly where it is, thanks to visiting V's son this evening (and thus I also got to finally meet his tuxedo cat Sam, who I've seen many many photos and videos of). So maybe we can manage that tomorrow, along with a plan to go to the castle. It's our last day here; I'm gonna miss it so much.

I didn't write here yesterday, but what I said on fedi last night was 'Tomorrow is going to be an absolutely disgusting day at work: stressful meetings, grim topics to dwell on..."

The stressful meetings weren't as bad as I expected. Though they were tiring. Lots to think about.

Then some other stuff happened that inspired a household conversation about logistics. All fine, very glad we can do the things we can do. But, more to think about.

Then I got a letter inviting me to my first in-person PIP (UK welfare benefits for disabled people) assessment in a decade.

It's next week, on the day of an important work thing.

At 9 in the morning.

In a part of the city I don't know at all. I don't want D to drive me but I'll have to do a practice run myself if I want to get the bus there. They always pick weird buildings that look like all the other buildings, or some industrial park miles from anywhere, or something inaccessible.

Anyway, back to work: I now have to spend the afternoon paying close attention to the Government's spending review, which is bound to make me angry and frustrated.

I've been struggling with not being able to articulate how I'm feeling about the overlap between disabled and trans issues in light of the Supreme Court ruling, the overambitious interim "guidance" from EHRC, and how widely the decision is being interpreted by police forces and NHS bodies and etc.

Around the time I started testosterone, I realized that medical transition is effectively acquiring a long-term health condition and while, yes there is specific transphobia in healthcare, there is also endemic ableism and a lot of the negative experiences that heretofore-non-disabled trans people are shocked and miserable about are just part of how healthcare treats people with any chronic health conditions.

So yesterday I read something on Facebook shared by a page called The Disabled Eco-Enby. It's so good ( but so long. )

( depressing shit )

After thinking we'd missed out on tickets to see Public Service Broadcasting, D heroically managed to both secure them and register us as a disabled person and carer so we could get to the crip section of the venue. He'd been there before and I hadn't, so he really was a carer.

The most exciting thing for D was that the venue which had previously been notorious among my friends for its terrifying stair-climber to get wheelchair users up its many many stairs now has a lift/elevator! (We were able to get out much more quickly and easily than fighting through the whole crowd by going down those very stairs so I still got to see them and, yep, would not like to navigate them as a wheelchair user in any way. I was very glad I didn't have to walk up them on my dodgy ankle!)

The most exciting thing for me was that the crip area had a drinks runner! Each pair of seats had a little leaflet on it with a few accessibility basics and a menu of what we could order from the bar. co2 numbers were high enough that we wanted to keep our masks on generally but okay-ish enough that we could just about feel okay getting one drink, so we did and it was super cool. Of course I usually have a similar system that involves just sending D to the bar! But it was so nice that he didn't have to do it either. Ethan the drinks runner was quick and cheerful and graceful carrying liquids around in the dark and didn't seem at all perturbed by his job, which helped me feel good about asking him to do it for us.

I tried hard to learn the two most recent PSB albums in about a week (and a week when my phone wasn't working well at anything, including playing music, and also one where I had too many work meetings to listen to anything) and I'm glad I did because very reasonably we heard more of them than we did the three I know -- which I think got about five songs between them.

After a few songs from The Last Flight and at least one or two from Bright Magic, a familiar chord filled my ears and my heart and transported me back to 2018, seeing them at Blue Dot with my friend Bethan and then buying myself a t-shirt as a treat to myself after finishing my first year of uni. The t-shirt has "I believe in progress" written above the three versions of their increasingly-abstract logo from the first three albums -- very clearly a radio telescope at first, it because a sufficiently abstract series of lines and angles in the same shape that it could be animated as pumping water out of a mine in the video played at their gigs when the Welsh coal-mining album was new.

When I wrote about their music like this and looked like this:

So, so many things were different then.

But some of the changes really have been progress.

D looked over at me and said "It's definitely past the point where your facial hair is longer than your head hair."

I smiled and said "Yeah the barbers are cutting my hair shorter for the summer." Indeed in the photo he'd taken of the three of us yesterday, I said exactly this: I forgot my hair was so short!

"That too," he said.

Because yes, some of the hairs of my wispy chinbeard are getting pretty long. I've noticed this myself because I do like to run my fingers over them, it's such a comforting stim.

I don't know why I'm in the habit of minimizing these transition-related things.

I think, maybe I just tell myself, I'm trying to let my body do what it's gonna do without judgment. Looming large in my mind are the transmascs I know online who've spent a lot of time looking at stuff on YouTube or Reddit or whatever and then being really miserable that their facial hair isn't growing in as quickly as X, or just being enmeshed in a culture of achievement and acquisition over some things that we have very little control over.

Sure you can do voice training and sure specific exercises are probably going to help the muscle groups that most quickly become more obvious. I don't mean "it's pointless to intervene" in any way. But it was a way of thinking that I didn't want anything to do with.

I understand people who are frustrated at not looking sufficiently like their target gender that they get misgendered all the time and stuff. Some of these guys dreaded grocery shopping or running errands or whatever because of how they'd inevitably be treated by strangers. I appreciate I'm privileged there because I can work remotely, rarely interact with strangers, and almost always get gendered correctly (the couple of times colleagues haven't managed it still stick with me, which is a testament to how rare they are).

When someone at trans gym was talking about starting hormones, someone else said "take lots of photos!" and the person said "I will" in a way that made this feel like it was already their plan. I had to wander away; I can't deal with this prospect myself. There's nothing wrong with making or sharing recordings or photos to see how your voice/body is changing over time, but such a methodical approach always repelled me personally. Of course it's not mandatory; there's never only one way to be trans. I think some of the guys I have seen being miserable online feel like this is required though, even when it leads to the kind of comparison that is the thief of joy.

But of course you see and hear about the people recording and sharing their progress. By definition, the kind that don't do that aren't perceptible in the same way.

I wonder if my avoidance of noting the tangible changes that I want and feel good about is maybe because I'm also feeling the weight of all the time that I was waiting to access HRT, when sometimes it was hard to read other people be joyous about the effects it was having on them.

Is it just magical thinking from my upbringing: if you seem too excited about something it might be taken away?

Is it something about my relationship with my body never having been all that positive because of its interactions with fatness and disability?

It's probably some of all of these.

There's currently a PIP consultation going on, as the outgoing government seek to impose ever-more-brutal restrictions on the ever-growing number of disabled people (whose numbers this very government substantially contributed to and now blames on a "sick note culture"), in the vain pursuit of votes from ableist bigots who aren't interested in the details of either the proposed or current systems.

Today at lunchtime I attended a (virtual) focus group to inform RNIB's response to the consultation.

Taking part was, as I expected, affirming and vaguely therapeutic, but it was even more exhausting than I had expected.

Afterwards, when the dog very politely and happily asked me to take him for a walk, I saw the mail has arrived, including the forms I have to fill out for my own PIP review.

Which, despite this claim having been made online, were sent to me on paper. And despite getting my PIP letters in large print, this is only in standard print.

I saw this post, by a disability rights lawyer, talking about extending accessibility features to more people who've aged into disability and who don't think that they're disabled or that accessibility menus are for them, and I've been thinking about it ever since.

I love that it includes good questions, answers, and good strategies to get more accessibility into the hands of more older people, and they sound like good ones. I think it was silveradept who I saw muse on how older people benefit most from learning about new/unfamiliar tech things through sources they trust and consider authoritative, and I love to see that reflected in these strategies, where the sources might be AARP, phone store staff, or their loved ones who found out about this via TikTok.

This topic also has me thinking that another way to address people not knowing about things that may become relevant to their changing bodies as they age is to address ableism as far and wide in society as possible.

The writer asks her dad great questions, like does he consider himself deaf (no), a person with a disability (no), disabled (no), or hard of hearing (yes). And there can be lots of reasons why someone who watches TV with no sounds at all, captions only, says he doesn't have a disability and he's only aware of accessibility because it's relevant to his daughter's livelihood. I wouldn't speculate on a specific stranger's reason for not thinking of themself as disabled, but one of those possible reasons is internalized ableism. Just ambient, systemic ableism that we all (including people who do identify as disabled!) can be affected by. Heretofore-able-bodied people have decades of thinking of disability as Other. Quite a lot of decades, in the case of an elder who's only recently acquired an impairment in something they'd previously not been impaired by. It can take a real paradigm shift for someone to start thinking of themselves as something that's been distant and by overwhelming consensus worse than their previous identity.

Of course I'm thinking of my own parents too. My dad just had surgery to repair a torn meniscus. Before he knew that this is what was causing his pain, he hoped he could "just get a cortisone shot and go back to normal." Didn't know the word ibuprofen (literally he struggled to pronounce it, and that's a whole week after I suggested it to him!). My mom said after the operation he walked with a walker only for "a few days."

She's no better: the very first thing she told me about his surgery on Skype today was to grumble "not that you'd know it" after mentioning that it had happened earlier this week. She resents him for getting better quicker than she was after a broken ankle a few years ago. My parents are both desperate to not think of themselves as disabled even temporarily.

Meanwhile here I am, taking advantage of every ambient mobility aid or adaptation available in my household in the wake of my broken ankle, whether technical (grab rails, waking cane, shower chair) or social (we've all agreed that until further notice I have dibs on the spot in the living room where I can sit with my foot elevated all the time).

But I grew up thinking the same way as my parents. It's the disabled friends I started to make only in early adulthood that taught me a better culture is possible. One where we work on ridding ourselves of shame and of the veneration of individualism. One where we recognize that everyone is interdependent, there's never been only one right way to succeed and that success isn't going to look the same for everyone anyway, that there's as many ways to live a fulfilled life as there are people.

I think younger disabled people can play a big role in helping older people can learn about the benefits of this kind of culture as well.

And devs can learn it too, to go back to the iPhone example. Maybe the 29 accessibility options don't only have to exist in their own special section. The article writer's dad was never going to look at a menu on his phone called "accessibility," even though there was an option there that makes his life better every day. A lot of people benefit from, say, larger text or live captions or reduced animation who never think of themselves as disabled or these as accessibility options. They can also be just "options," other ways for the display or the notification sounds or whatever to behave. (While also staying in the accessibility menu ideally, because that's where many people are used to finding them, and also it can be way more accessible to go "okay, here's the 'vision' section, that's what's going to be relevant to me" rather than having to wade through screenfuls of irrelevant-to-me bells and whistles in the display options to find "high contrast mode" or whatever.)

It's a tricky balance, between disability pride and wider awareness, a tension I feel in all my thinking about how I as a disabled person interact with an ableist world. Being "integrated" or "mainstreamed" isn't good because it makes my access needs less shameful by being more "normal." Numbers don't legitimize them; they'd be just as important if it were only me who needed magnification and good color contrast and no animations. But it's not just me, so it's good to put such options in front of as many as possible or the people who would benefit from them.

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 wasn't gonna write about this, and then I did. Nothing in here that disabled people in the UK need to read, but in case the rest of you want some context/my thoughts... )