@neil if privacy-respecting technology makes any difference, it's because other chunks of society take societal actions to use, share, recommend, and support them. The technology simply existing is not enough, so it is not the technology fixing anything.

@ryanc yes.

Boys over the age of 8 are *far* too cool (read: indoctrinated into toxic masculinity) to do anything fun, or be seen in the presence of a parent.

PS, my brain is a little clearer now and I've remembered a thing.

If you really want to make a difference, there are things you can do. Some are teeny tiny.

- mask more & better so fewer people get ill

- vaccinate

- take H&S seriously because it prevents disabling accidents

- reject lazy scrounger narratives and call them out when you hear them, especially from loved ones

- vote for people / parties / policies that don't demonise us (if they exist, otherwise against the worst)

I want to be believed. If I tell you it's so, it's so.

I want understanding. Actually dig into what I've said and understand that this is my life and I am the expert in how it works.

I want respect. Don't treat me like a child or an idiot. I can cut my own food.

I want accommodations. If there's something trivial to you, but might be taxing for me, offer to do it for me. You can go to the bar for drinks, I'll lend you my card.

I want you to apply all this to others with disabilities.

3/3

I don't want or need sympathy. I'm well aware of how awful and unfair it is.

I don't want or need advice from anyone who doesn't have long covid or a similar condition. I cannot waste energy on your fad diet or yoga; I already know they won't work.

I don't want or need to be told I might get better. I most probably won't. And I'm having a much better life working with what I've got than pining for what I haven't.

I don't want or need cheers for existing. I'm not your inspiration porn.

2/3

#LongCovid energy crash day.

Today I have:

- collapsed and was unable to move for over an hour

- had physical help to go to the toilet (including holding me up while I adjusted clothes)

- slept for a total of several hours

- eaten only when I was helped to sit up and the plate was put in my hand

- had a ten minute conversstion, by the end of which my words were slurred

- typed a couple of toots

- nothing else

I "don't seem #disabled" because you don't see days like this.

1/3

@anantagd @ChrisMayLA6 @janvenetor @tompearce49 our entire society is coercive.

Every policy to cut benefit bills or imagined fraud, or get people into work without acknowledging the barriers. Every sanction and "review". Every research funding decision that prioritises away from long term conditions. Every newspaper article about "scroungers". Every extra week on waiting lists. Every overworked, under-trained healthcare professional that isn't supported to do their job.