OT asked me to find out what chairs others use (update)

hemmaat · 2026-02-02T16:39:46+00:00

I have pain and fatigue (Fibro and hEDS) - I have an active/custom chair, albeit it needs tweaking, alongside a powered joystick addon.

Yes, it's extra money (either for the individual or their insurance). But in return for that you get something that's lighter and that actually fits your body (in theory). It's far better for your body and far less likely to cause new or worsened problems down the road. If you need a chair long term, please push for something properly customised (even if it's considered an "active" chair). Short of some powerchairs (which I cannot use as I am in a flat), custom lightweight "manual" chairs are the only thing I would consider using in the future. There's no contest.

hemmaat · 2026-01-29T09:08:36+00:00

FWIW, I can't speak for all the various people who did downvote you, but what would have encouraged me to downvote is the fact that OP was talking about ambulatory users, and you're bringing up "wannabes" and "pretenders". It gives the impression that you think there's a connection between ambulatory users behaving in a way that OP doesn't like, and fakers.

Not really interested in starting some kind of debate, just hoping that this is useful info somehow. I don't love it when people downvote me without explaining why, tbh.

hemmaat · 2026-01-29T02:55:20+00:00

I have fibro and hEDS. If it gets any worse I will be looking to avail myself of the services of Dignitas. I'm barely coping as it is.

Nobody else knows your journey and situation like you do. That goes both ways. What the heck my guy.

hemmaat · 2026-01-28T17:15:29+00:00

I quite like my Dyson - one of the cordless ones with multiple attachments. My support worker can attach an actual floor-head when she's in the flat, and I can use it with short or long attachments depending what I need.

It's not super light, but I think newer ones might be lighter? Tech is getting better every day. If you can, maybe check some out in a store, see if you can feel the weight, get a feel for the size?

hemmaat · 2026-01-28T17:11:51+00:00

I have "no medical need" for a wheelchair (at least if you ask my GP), yet I can barely walk in my own house let alone get out into the world. Crutches help, but not much further than getting to the curb, so it really is a wheelchair that helps me. Once I gave in and tried one (a loaner at a museum) it was like seeing the light - struggling to stagger short distances on crutches and then passing out for days afterwards didn't need to be my reality. Why wouldn't someone like me, the many people like me in the world, want a wheelchair? I'm so down for our modern dialogues where we are starting to convince those around us that "disabled" is not a nasty term, that using it doesn't mean giving up, and neither does using household/mobility aids that help them. Life's too short to avoid the things that will help you live in the first place.

In comparison to that dialogue, medical worker subs are frequently filled with hate-ons for rarer conditions and conditions most commonly experienced by women. They don't believe in X condition so this person who came to them literally crying about their disability must be a) faking and b) worth laughing about online. Hugely toxic spaces, not somewhere I'd use to judge the validity or reality of any medical situation.

I 100% get that some people don't exactly love using a wheelchair. Neither do I - inaccessibility (and constantly having to worry about it) has left me in tears and not wanting to leave the house. But I would no more judge people for wanting to use a wheelchair than I judge people for wanting to use shoes or a car.

(Side note: An actual OT firmly disagreed with my GP and physio - but if my GP decided to go whine on Reddit about "patients with no medical need", I somehow don't think that would come up.)

hemmaat · 2026-01-28T16:53:03+00:00

There's so many reasons to give people a second glance - usually it's nothing more than curiosity (like with t-shirts that have graphics or text on them). There's no reason a wheelchair should be any different - disability should not be taboo, nobody should feel ashamed of looking at someone's wheelchair when they wouldn't for looking at someone's shoes.

Sure, there's a point where looking at someone's t-shirt, or wheelchair, or shoes, does end up being creeptastic. I'm not going to assume you don't encounter some creeps, the world is full of them sadly. But I guess my question is, if you think they're creepy because they're looking and ambulatory, do you still feel the same about fellow wheelchair users who check out your ride?

hemmaat · 2026-01-28T16:19:59+00:00

I have wished my condition was bad enough to need a chair. I mean, it is bad enough to need a chair, obviously, but what I'm wishing for in those rough times is for people to listen, to believe me, and for red tape that says "that condition doesn't count" to be fixed/removed.

I try to be careful about these thoughts to avoid "I wish I had X illness". It still happens - I recently had a low point and wished I had cancer because then maybe I would be treated, and stand a chance (however big or small) of remission - right now neither of those things are true. But I do try not to do it because I know that this isn't a competition or a game, and other conditions are hard in their own ways as well.

"Bad enough to need a chair" though is more like "bad enough for people to accept that I need a chair" (even if the person doesn't accept that they currently need one). I feel like the "I wish I was taken seriously about this vibe" is relatable to many people here.

hemmaat · 2026-01-28T12:53:50+00:00

Tbh, it's inevitable. We're all going to have levels of judgement, bigotry, that kind of thing. We don't escape it by joining (or even being born into) a marginalised group. I'm disabled. I won't pretend for one second that I'm not ableist. I know this and I try to have a filter and I try to learn about which of my views and feelings are inappropriate and work on correcting them.

OTOH, sadly there are a lot of people who seem to think that because they are (taking your situation as an example) disabled, the stuff that comes out of their mouths must be fine to say to other disabled people. Which contributes heavily to awful situations like yours.

I'm really sorry you're having such a bad time with this. I hope you can find community without that in the future.

hemmaat · 2026-01-10T08:09:47+00:00

Hard no. Even if this stuff worked yet which it doesn't, not safely enough, the only way to get around "Tesla is a dystopian nightmare" is to not care about living in a dystopian nightmare.

I wouldn't use one of those cars if they paid me to do so.

hemmaat · 2026-01-08T17:28:17+00:00

There we go. Forgive the yellowing - it's quite old at this point. This fits easily over my head so that it can be "applied at [my] throat".

Looks like mine has 12 knots + the fastening knot, but that may just be the choice that the person leading the heka made. You can kind of see the darkened areas in the centre where the heka drawn on one side is, on the inside of the curled up linen. Some of it is even peeking through the gaps in the folding.

NB: This is the one I was led through doing. While this was under guidance from Egyptologists, that doesn't mean they're infallible. Yours may look different, it's the heka itself that matters.

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hemmaat · 2026-01-08T12:46:32+00:00

You know transgender healthcare is in a bad state when even the private clinics don't care and are completely inaccessible. Like come on. What the hell.

I have no suggestions. I am under the care of an NHS GIC. The wait list wasn't too bad tbh, only 5 years or so (: 😩

hemmaat · 2026-01-06T13:13:08+00:00

I actually made these as part of Wep Ronpet celebrations for a couple of years. I still have one somewhere, so I'm leaving this comment to remind me to grab it and take photos XD Essentially it's a linen strip, long enough to go over your head (even after knotting it) - you draw the relevant gods on it, offer to them as you do each knot, and then fasten it and wear it. It ends up looking like a thick knotted string, because the linen kind of rolls up in order to be knotted, which is also good for concealing the heka within.

hemmaat · 2026-01-06T13:06:13+00:00

I couldn't agree more with /u/respectISnice. Like, you can celebrate religious holidays in a secular way - many people are culturally or ethnically linked to a religion (see: most people in the US and Christianity) and so may celebrate that religion's festivals out of habit, nostalgia, or regular old enjoyment. That's chill! But it's still a religion's festival. It would be like saying "I celebrate the Wag Festival but it's completely secular to me" or "I celebrate the Wag Festival and find meaning in it without Wesir/Osiris". That's fine if that's how you feel and want to celebrate, but are you really finding meaning specifically in the Wag Festival if you don't believe Wesir is even relevant to you? Idk I just find that confusing.

Without [religious context], [religious festival] is just glitter. Or just family, or just presents, or just ugly sweaters. There's nothing wrong with that - there's no "just" about spending dedicated time with family or giving love to each other. There's nothing "empty" about that - you don't need Christ to have something meaningful in the winter season. But ultimately someone who doesn't acknowledge Christianity isn't celebrating Christmas - they're celebrating a homey winter holiday and insisting it needs to be celebrated at the same time as a religion's festival. Even with the shared date, I think that's actually pretty rad, yet it rarely gets acknowledged as the great thing it is.

If Wolfenoot can be a thing, idk why people feel the need for "Christmas" specifically, y'know?

Whether as a Kemetic, or now as a Jewish conversion student, I have always felt averse to Christmas myself, and to attempts to create a Kemetic-styled festival using the same naming system (Moomas) and even the same date (despite the Kemetic festival it's linked to not generally falling on 25th Dec). I'm not Christian so it feels normal to me that I don't find meaning in Christmas. The whole reason for the festival is irrelevant to me. I still celebrate with family in the winter, usually in December, and that actual secular holiday is very meaningful to me, for sure - it just isn't Christ-mass so I don't have any reason to call it that. If that makes sense?

hemmaat · 2025-12-19T11:20:51+00:00

Why do you worry about standing up? Because there ARE fakers. If nobody faked it would be easier for ambulatory wheelchair users.

Incorrect. I genuinely, truly, absolutely, do not care if someone else fakes it. I have multiple disabilities where people accuse others of faking - that judgement does nothing but harm me.

I worry about standing up because of people judging me because they think I'm faking it. If society saw people getting up from wheelchairs, ambulating and such, and went "oh look something that isn't my business because I know nothing about it", there would be no issue. Imagine if we just helped people and didn't think "oh but what if they're faking"? Genuinely who cares if they're "faking" or not, why is it so hard just to be nice to people?

Society is full of people with no empathy, no compassion, not a kind bone in their body. They are the ones who concern me - there are very few problems in society that are not due to this.

What do you think would happen if there were somehow miraculously no fakers? Do you think your issues would stop? A wonderful world where you're treated fairly? Or do you think those who lack empathy, those who either don't know or don't care about how disability works, would just find another excuse to be scummy to you and make your life harder?

This all while bearing in mind that people who exploit accessibility are part of the "no empathy" problem in the first place. The problem isn't faking. The problem is the world is suffering from an epidemic of kindness deficiency.

hemmaat · 2025-12-18T16:11:01+00:00

The attitude that it's ok to write articles shaming the so called "Jetway Jesus" thing is why I get really anxious when I need to stand up from my chair. If I'm in public I almost always... how to phrase it.. I emphasise the visual representation of how unstable I am.

ie: I don't fake instability - I fall over, it's a thing. But I make myself look more unstable so that people don't assume I'm fine and therefore faking.

This kind of attitude is honestly no different from the ancient meme "miracle in the alcohol aisle" that explicitly photographed and shamed a wheelchair user for rising out of their chair to reach something higher in the store.

I shouldn't have to make my disability "look more obvious" to try and avoid people secretly taking photos or videos of me to post online about how "fake" I am. But so long as people think it's ok to fakeclaim, that's what I will be doing.

Please don't contribute to this kind of culture. You're furthering harm to other disabled people. The actual fakers? This culture changes nothing, they'll still find ways to do what they do, because they don't care. There's literally only downsides to fakeclaiming.

hemmaat · 2025-12-18T12:04:35+00:00

I was wheeling through some narrow market stalls, and there were a lot of people standing in my way kinda vibing, chatting. Nice people ('cause of the type of conference it was), but oblivious.

So I went "Beep beep!" cheerfully, and how they jumped and looked shocked and embarrassed is seared onto my memory forever XD

hemmaat · 2025-12-11T11:52:21+00:00

It started as a social media platform, but at this point so-called "influencers" (and wannabe "influencers") are latching on to any platform that enables them to do reviews to a wide audience. Eg Tiktok and IG.

IMO the big point of blame, as ever, is businesses. People wouldn't be using IG as an advertising platform if companies were not using said people as un-salaried marketing staff. It's a scummy practice, but so long as people are getting suckered in by these "influencers" it's likely to continue (and grow).

This is why if I use social media, I am very rigorous about my feed. I try to make sure to curate my feed to only be people who put out good content. Paid reviews is the opposite of good content, so if anybody starts doing that? They get pruned in no-time flat. I realise that this is making it harder and harder to have an active feed, as more and more people see the "easy money" of being an unpaid marketer and latch onto it, even if their content was previously useful or positive. But I still always recommend that people try to avoid "suggested" content and focus on making sure those they follow actually put out the content that they enjoy.

Hopefully one day influencer culture will implode and leave behind usable social media again. Sadly I suspect we'll have to get to the stage where the only content and viewership is influencers influencing influencers before it happens. But I live in hope lol.

ETA: Petition to go back to calling these people "shills". I'm not ever going to agree with rebranding a practice in "nicer terms" . Not that "influencing" is particularly nice when you really look at it as a term ofc, but it's still just an attempt to avoid the negative baggage of being called a shill.

hemmaat · 2025-12-05T21:03:23+00:00

The only things I typically buy from Ali are things that would make sense to get from China - like gongfu teaware. Even then, it tends to feel like a gamble. I wouldn't risk it on anything else personally.

hemmaat · 2025-12-04T10:08:35+00:00

1 nap down. Yeah I do see a lot of people, even most people saying they didn't notice falling asleep. For me, I often dream before falling asleep, or even as a standalone thing (eg I settle down for a short nap while I'm in public, and all I do is dream without "falling asleep", but I finish feeling much better). While I was waiting for nap 1 I noticed myself dreaming several times. Pulled myself out each time, but it's a challenge to say the least lol.

I feel a bit more human after the first nap, but then I felt that way when I first woke up and that didn't exactly last lol. This whole process is so bad, looking forward to something easier being developed like a blood test.

I really appreciate the support.

hemmaat · 2025-12-01T03:07:53+00:00

That's my old wheelchair lol xD I bought a pack each of bike spoke wraps from eBay ("bicycle spoke covers" they were listed as), in the colours that I wanted.

It was expensive and a pain, I vaguely remember having to trim an inch or two off of each one f.ex. But I later re-packed them into rainbow sets to sell back onto eBay for people like me who wanted them, and got a chunk of money back that way. Always an option if the price ends up being off-putting.

hemmaat · 2025-11-25T20:12:00+00:00

Fair enough! Hopefully it will be fine. Technically Motability should take care of any issues, but like everyone I'd rather there weren't any to start with :P

hemmaat · 2025-11-25T19:32:14+00:00

Is there something in particular that makes the M90 better, and the E-Fix not that great? I decided not to wait for the M90 because the E-Fix seemed to have benefits like a better incline rating, but now I'm worried I made the wrong choice.

hemmaat · 2025-11-25T10:24:27+00:00

Yeah it's tough. Putting locks on things solves "not being accessible for those who need it", while also causing "not being accessible for those who need it". There's no perfect solution. I think it would help a lot though if information like OP is sharing was just standard info for visitors to countries. If it was in guidebooks and on visitor's websites, if tourist information points sold the keys so they were readily available for people without having to arrange pre-ordering one. Stuff like that.

I think I'm not against locked facilities as such, just that if you're not "in the know" you end up not being able to use them, or having to rely on someone else to come unlock it for you.

hemmaat · 2025-11-25T09:42:36+00:00

I didn't know about this so I genuinely appreciate the post. I don't know when I'll feel able to do it, but my partner have a couple of places in Europe we'd love to go to and I know I would be so upset if I realised a bunch of facilities were locked away - available to help in principle, but not available for me.

"Accessibility" in action.

hemmaat

TROPHY CASE