@NatalyaD@disabled.social avatar

NatalyaD

@NatalyaD@disabled.social

I am a deaf and disabled cis bi woman living in the UK. I am interested in disability rights practice and law, assistive technology, cats (always cats) and I am fuelled by lots of tea.

My profile picture is a red lizard for no reason other than I like it.

This profile is from a federated server and may be incomplete. Browse more on the original instance.

purplepadma, to random
@purplepadma@beige.party avatar

I made myself go out with Tom to buy extra wine glasses for the party. I ended up buying a keepsake box for the birthday card I hope to receive, and a wooden spinning serving platter for nibbles for the drinks party. Never go into TKMaxx if you want to come out empty handed! I’m feeling a bit better but short of patience, I was agitated in queues and now cross with myself for getting irritated with Tom in Tesco (I find supermarkets stressful and overwhelming at the best of times). I’m going to try and relax as much as possible this afternoon as we are going to a dinner party this evening.

NatalyaD,
@NatalyaD@disabled.social avatar

@purplepadma What is it with TKMaxx and huge queueues at all times of day. The place is dead, but still a massive queueueue.

Haven't been in for ages cos I can't stand. Last time was when we met ppl in town with partner kindly shoving me in the wheelchair so we went in on the way home for an excellent silicone spatula which is very useful. Partner and I hate shopping so didn't buy much more thankfully!

purplepadma, to random
@purplepadma@beige.party avatar

I feel like my PhD is all going wrong and I can’t stop crying

NatalyaD,
@NatalyaD@disabled.social avatar

@purplepadma I work with disabled students, and have seen a lot of interesting PhD journeys. Your already tooted plan to have more sick leave is super wise and will not wreck your PhD. You will get there, it just might take a different path as and when your condition permits.

The fact you are engaged and supported by supervisors are all the factors that result in eventual success in spite of the challenges (and I've seen a lot rescued!).

Edent, to random
@Edent@mastodon.social avatar

I was interviewed for @directus's "What's In Your Dock" series.

https://directus.io/tv/whats-in-your-dock/terence

Listen to me ramble on about some of the tech that I use 🙂

NatalyaD,
@NatalyaD@disabled.social avatar

@Edent I don't think I've seen or heard you before. I appreciated the captions and variety of transcript displays!

I love seeing other people's setups, especially when they have thought hard about how to make them work for their own needs. I have an electronic height adjustable desk from Disabled Students' Allowances in 2015, my needs assessor talked me into it and it has been the most useful thing I have. Maybe once both of my hips are fixed I'll manage standing at it!

@directus

purplepadma, to random
@purplepadma@beige.party avatar

What do you know, I slept two hours and I feel completely different. Normal mood and calm. Sometimes it’s like sleep reboots my brain. I think I’m going to fall asleep again soon, but for now I’m enjoying the moment

NatalyaD,
@NatalyaD@disabled.social avatar

@purplepadma This is great to hear, I hope more good-brain happens and good sleep too!

purplepadma, to random
@purplepadma@beige.party avatar

Today is the first day where I’ve felt doubt about doing my #PhD. Up until now I’ve loved it. I know it’s just depression warping my thoughts, but I feel like walking away. I will walk away until Monday, hopefully then I’ll be ready to get back in the saddle #phdlife

NatalyaD,
@NatalyaD@disabled.social avatar

@purplepadma Having a break sounds like a good plan. I hope a break helps and you feel less bad about it all soon.

NatalyaD,
@NatalyaD@disabled.social avatar

@purplepadma Giving yourself till Monday is very wise.

purplepadma, to running
@purplepadma@beige.party avatar

Just been for a power walk in the spring sunshine. Tom has been telling me off for exercising while I’ve got a cold, but I’m thinking that you can’t pause for every minor virus. What does my crew say?

NatalyaD,
@NatalyaD@disabled.social avatar

@purplepadma A former doctor friend says if it's just the head then go for it, if it's the lungs too be more careful.

My partner who is asthmatic finds that sometimes if she has lung-crud (sometimes caused by head crud and gravity) going out on her bike helps her clear her lungs but she does have to be careful to do a shorter ride and not overdo it. (She has all the stats so can tell if she's riding slower which is an early sign of lurg).

Power walk sounds ok to me. Get well soon!

purplepadma, to random
@purplepadma@beige.party avatar

I love my bestie so much but her voice notes are so long. I’m tired and full of cold and confused by the clock change and I’ve had to text her to say that I just don’t have the capacity to listen to an 8 and a half minute message. Am I an awful person?

NatalyaD,
@NatalyaD@disabled.social avatar

@purplepadma @RolloTreadway I'd expand this to say "you don't want to listen to that long" and it's irrespective of illness or impairment. That isn't very sociable or thoughtful.

I'm deaf and I have had people I know try and send me voice notes then get pissy when I ignore and don't listen to them.

NatalyaD,
@NatalyaD@disabled.social avatar

@purplepadma @RolloTreadway

I think being firmer is a very very reasonable thing. I am a bit cynical about "I statements" but this would be very straight forward to frame something like "I appreciate you wanting to show me care with voicemails but I need to let you know that I find them very stressful, especially when I am less well. Could I ask you to........."

Then if friend doesn't take that on board and respect your boundaries. You know they're not a good friend.

ChrisMayLA6, to random
@ChrisMayLA6@zirk.us avatar

Another cost of the disaster that is the privatisation of water... an increase in hospital admissions for water borne diseases in England.

Its not really rocket science is it; you pump more raw sewage into rivers & water courses, and people are more likely to be exposed to infected water.

Slowly but surely all the various crises in the UK are joining together to become one enormous omnicrisis, and at the centre sits the Tory party!

https://www.theguardian.com/environment/2024/mar/29/hospital-admissions-for-waterborne-diseases-in-england-up-60-report-shows

NatalyaD,
@NatalyaD@disabled.social avatar

@Cyclist @ChrisMayLA6 Looks like someone tried litigation https://www.mcsuk.org/news/high-court-delivers-verdict-on-our-sewage-case/

but they lost in the high court and don't seem to have decided to appeal at this point.

Honestly thinking we need to start citizen protest, mass refusal to pay water bills until the sewage spews stop. Thing is, we'd need millions of people to agree to refuse and "not blink" regardless of threats and court cases etc.

revk, (edited ) to random
@revk@toot.me.uk avatar

My first recycling collection rant - not quite as expected...

https://www.revk.uk/2024/03/the-first-council-rant-and-my-apologies.html

I feel a new e-paper project coming on.

NatalyaD,
@NatalyaD@disabled.social avatar

@revk To be fair to you, the collection system looks really confusing. Think how confusing or impossible it probably is for people with poorer English or comprehension skills. The council should make it unavoidably easy to understand.

And your thoughts on shitty FB bot and unmonitored email contact are 200% valid.

NatalyaD, to random
@NatalyaD@disabled.social avatar

Disabled man gets his council to agree an accessibility-review and hopeful replacement of inaccessible cycle infrastructure

https://road.cc/content/news/disabled-cyclist-wins-challenge-remove-barriers-307551

Difficult with piecemeal challenges, but the more we get and log the better.

quixoticgeek, to random
@quixoticgeek@v.st avatar

How effective is ones altruism, when it involves 25 years in prison...

NatalyaD,
@NatalyaD@disabled.social avatar

@quixoticgeek I read that his 'donations' were a tiny tiny percentage of his 'wealth' much less than one of his small personal projects.

NatalyaD,
@NatalyaD@disabled.social avatar

@quixoticgeek Well I've heard the 'effective altruism' movement isn't necessarily effective either and is contaminated by the tech/dude-bro nature of most of the people involved.

NatalyaD,
@NatalyaD@disabled.social avatar

@quixoticgeek Good old Abigail! She's brilliant.

NatalyaD,
@NatalyaD@disabled.social avatar

@quixoticgeek I liked his old stuff, but her stuff is much more creative and has a hell of lot more sharpness and bite to it.

purplepadma, to random
@purplepadma@beige.party avatar

Morning. I was awake a lot in the night then I overslept, I’m sleepy and confused. Tom is also running late and we’ve both got colds so it’s a slightly rubbish start to Thursday, which means it can only get better. I would quite like to go back to bed but I’m going to a daily kickstart deep work session instead, what a trouper 🙃 Gosh, what a dull toot, why do you all follow me??

NatalyaD,
@NatalyaD@disabled.social avatar

@purplepadma @falcennial It's true.

I also like how Charlotte openly talks about her struggles and the hard work to manage them AND the successes which are sometimes cos hard work and sometimes don't always happen.

Makes me feel more normal with my different struggles.

NatalyaD,
@NatalyaD@disabled.social avatar

@purplepadma @falcennial Absolutely, I think you do a great job of explaining that even when relatively well, your bipolar takes a lot of work to manage and you have to balance kicking yourself up the arse, meds and 'fuck this' resting or not doing certain things. I have another bipolar friend who describes similar challenges mediating/moderating things to function.

Social media can sometimes only show shiny curated 'fake perfection' so to balance that can be empowering and beautiful.

Edent, to solar
@Edent@mastodon.social avatar

🆕 blog! “Fifteen MegaWatt Hours from Sunshine - Four Years with Solar Panels in London”

Just as the UK was entering the first COVID19 lockdown, we got solar panels installed on our roof. Four years later and our generation meter shows they have produced 15,480kWh of electricity. That's a rather impressive 3,870kWh per year. This is what the average UK …

👀 Read more: https://shkspr.mobi/blog/2024/03/fifteen-megawatt-hours-from-sunshine-four-years-with-solar-panels-in-london/
⸻

NatalyaD,
@NatalyaD@disabled.social avatar

@Edent My partner saw something about 'pirate' panels installed 'temporarily' on a balcony of a flat and how effective that could be and indeed that replacing a panel is very cheap now at ~£120ish which is a huge drop.

As someone who rents, we are stuck with landlords who don't invest in basic maintenance nevermind solar panels cos they don't see the gain for themselves enough (and would probably stiff us if they did have them).

changeling, to mastoblind

@mastoblind I just ran into not being able to file my taxes online accessibly. I have to verify my ID online through id.me and can’t provide a satisfactory document upload. I can’t even access their video call feature to verify because I have to upload a copy of my id first. This is the third time this week I’ve run into a problem like this. I’m just over it.

NatalyaD,
@NatalyaD@disabled.social avatar

@changeling @mastoblind government departments all the way down in the UK. I usually threaten to sue them at this point but that's endless and exhausting.

Edent, to random
@Edent@mastodon.social avatar

"Burning all my books."

Why I got rid of all my paper books and fully embraced the future.

https://shkspr.mobi/blog/2012/03/burning-all-my-books/

NatalyaD,
@NatalyaD@disabled.social avatar

@Edent I can't read print books anymore, haven't been able to since late 2015 due to vision and balance issues. I struggled on thru my PGDip course as most books were only paper but it was a slog.

I stopped reading books for a few years which is unlike me. Then found suitable ebooks in library, drm free and now RNIB Book share thru work. I am back to reading over 100 new books a year again.

I'm slowly giving away my paper books but still keep the old non e stuff for now.

sue, to random
@sue@glasgow.social avatar

So this royal lassie is getting chemo, couple of thoughts:

Normally I'd advocate for absolute respect for someone's privacy, but these aristocratic folk receive public spending that could otherwise be spent on the health services so they can get fucked

I wish they were being more specific than "cancer" because one of the things it's important for people to understand is that that's meaningless at this point

As a cancer patient in their 40s, fuck the royals 👍🏻

NatalyaD,
@NatalyaD@disabled.social avatar

@sue Not to mention various journo friends say that palace PR is top notch, so the furore was either allowed to happen, or deliberately triggered and stirred up "all publicity is good publicity" kinda thing. That reduces my sympathy for 'her privacy' when it's all part of a PR/press game.

Edent, to random
@Edent@mastodon.social avatar

Bad news! A financial institution has just CC'd me and about 100 other customers.

Good news! I now know how many people use [name-of-service]@[their-domain.tld] as a contact address!

Thoughts and prayers for the poor admin assistant who is going to have to do the GDPR walk of shame.

And sleepless nights for the IT team who didn't set up rules to prevent a mass CC.

NatalyaD,
@NatalyaD@disabled.social avatar

@Edent Did they mean they wanted the proper e-statement from the banking website rather than a screenshot of online banking display? I agree about the likely veracity of such...

Both of my banks have pretty terrible UI for getting statements as PDF, it's a bang-your-head-against-the-stupid which may also not be working properly.

Financial orgs are 1 step above govt depts for clue about e-info and arbitrary rules about wet ink nonsense.

quixoticgeek, to random
@quixoticgeek@v.st avatar

Tomorrow I need to go buy more screws. And try to find a way to get the broken screw out of the wood. But for now. I'm gonna curl up under a duvet with a book. Just as soon as I work out which book from the 5 stacks of books on or around my bed to read.

The observant among you will notice that it was 6 stacks when I tooted about them earlier this week. I've since discovered I could merge two of the stacks without a substantial reduction in structural integrity...

I hope.

NatalyaD,
@NatalyaD@disabled.social avatar

@quixoticgeek this aged well ;)

18+ sarahmatthews, to random
@sarahmatthews@tweesecake.social avatar

My friend Charmaine is helping to raise awareness of the impact of long wait times for vital vision rehabilitation support in the UK - sign the petition | RNIB campaign petition https://change.rnib.org.uk/page/142860/petition/1?locale=en-GB https://change.rnib.org.uk/page/142860/petition/1?ea.tracking.id=8ee5e017

NatalyaD,
@NatalyaD@disabled.social avatar

@sarahmatthews @disability It would help if all councils treated their sight-rehab trainee staff properly. I work with people doing one of the few recognised training routes, and some councils do not give the trainees study time, the sudden jump back to academic study, or support them with their own disability support needs. The course is intensive to study and run and isn't resourced enough by the university either.

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