March open thread: Disability/ableism March 12, 2020 2:32 PM   Subscribe

This thread is continuing conversations about disability/ableism both on and off the site. It is a space for people affected by ableism to converse. You get to decide if that applies to you; if you're unsure or questioning, your contributions are welcome. This thread is for everyone to read, but mostly for disabled people to participate in.

Previous threads have discussed: needs of neurodivergent people on the site, models of disability, conflicting needs and accommodations, and access intimacy. You absolutely don't need to read any of those threads to participate, but there's a lot of good information there if you'd like to peruse them!

This thread is a space to talk about ableism or converse with others affected by ableism. Again, you get to decide if that applies to you. This space is not about gatekeeping, and ableism may affect many groups, including chronically ill people, neurodivergent people, d/Deaf people, and others. However, no one is required to take on the label "disabled" or "affected by ableism." These threads are open to discussion of anything and everything about ableism and those affected by it. I'll provide a small prompt that people can use to get started if they like, or you can post whatever is on your mind. Don't worry if it's not related to the current flow of conversation. We encourage you to talk about your experiences, but please refrain from talking about other people's imagined experiences. Here are some ground rules to help with those goals:

1. Disabled and neuroatypical people should be talking most of the time. Neurotypical people without disabilities, take a step back and mostly listen.

2. Some neuroatypical, chronically ill, d/Deaf, etc. people identify as disabled. Some don't.

3. Some people prefer person-first (such as "person with autism") or identity-first ("autistic person") language. Please respect others' preferences and let them talk about themselves however is comfortable for them.

4. You don't need a doctor's diagnosis to identify as disabled.

5. Different people sometimes have conflicting access needs. Sometimes a group can't accommodate them at the same time.

6. "I'm here" and "I agree with this (quoted) point" comments are helpful and welcome.

7. Even more than usual, please try to be gentle with each other and yourself in this thread. (Especially because some of us, because of our disabilities, have a particularly difficult time dealing with expressions of anger.)

---

Thoughts to get us going (feel free to skip!):

I've been thinking about "accessible spaces" a lot lately. Accessible spaces define my life, because they determine exactly what I can and can't do. If you could design an accessible space (either tailored to your individual needs, or in general to be accessible for many people) what would it look like? This could be a room, a house, a transportation system, a college, a city, anything. I would love to hear others' thoughts on this, for a few reasons: 1) it helps others understand what accessibility needs actually look like and how to implement them, 2) it helps people with similar needs brainstorm ways to address them, and 3) it helps normalize disabled people's needs and the environmental structures that address them. Feel free to think within the constrains of our current technological capabilities, or go wild with your imagination. Say as little or as much as you like.

For me, an accessible house would be a small flat--no stairs, not so big that I get tired walking across it. It's either in a very quiet neighborhood or very well sound-proofed. There's central heat and air so that I can carefully control the temperature. All of the lighting is incandescent. The kitchen counters, sink, and cooktop do not have cabinets underneath them so that I can sit while I cook or clean. There's a dishwasher. The bathroom has a built in shower seat that is actually at the appropriate angle to allow the water to hit me when I sit on it, but it folds up in case I want to use the tub. The sink has a countertop but does not have a cabinet underneath, and there is a stool I can sit on while brushing my teeth or washing my face. The bedroom has full black-out curtains and the bed is about knee-height (easier to get into, but not so much that it's hard to get out of). There is a walk-in closet that allows me to store my clothes on shelves or hangers so that I don't have to open drawers to get dressed.

To get a little sci-fi with it, my house would have a bus-stop right outside of it. There would be an app that allows me to tell the bus to stop, so that I can wait in the house instead of the heat or cold. The bus would always have plenty of seating. There would be a quiet section with some sort of noise-blocking field. I would select my destination on a screen on the back of the seat in front of me, and it would show me a map of the bus's movement. I would receive an alert when my stop is coming up and the system would send a notification at the appropriate time to the bus driver to tell them to stop (rather than requiring me to pull the cord neither too soon nor too late). The screen would tell me if I need to make any transfers. If I do, it takes me to a stop that is temperature controlled and has plenty of seating. I receive an alert just before the next bus arrives. There is never any fare.

What would your accessible space(s) look like?

Or, what would you like to talk about? How is everyone?
posted by brook horse to MetaFilter-Related at 2:32 PM (41 comments total) 23 users marked this as a favorite

I'm glad these are continuing! Thanks for making this post, brook horse.
posted by cortex (staff) at 2:32 PM on March 12 [3 favorites]


Glad to hear cortex, thanks for putting it up so quick!

I'll also note that I wrote this up before everything kind of exploded re: COVID-19, I didn't have the spoons to write something about it in the post but I acknowledge that it's a big issue for a lot of folks that will be in this thread. Definitely anyone feel free to talk about it and how it impacts the disabled community.
posted by brook horse at 2:44 PM on March 12 [4 favorites]


Can I move in next to you? I'd like to walk around in some sort of suit that gave me the feeling of warm Epsom salt hugs to all my muscles and joint but also had air conditioning when needed. That's my version of a space suit.

Housing I'll have to think of as I just get focused on the comfy warm cozy nest bed and the deepest best bathtub in the world. With no stepping into involved.
posted by kanata at 3:22 PM on March 12 [6 favorites]


And I would like a leather butchy punk version of all my disability aids. I have a flame cane but need more options
posted by kanata at 3:25 PM on March 12 [12 favorites]


I'm going to have a big walk in shower right in the bedroom on the other side of a little wall thing. It's got a heated floor and towel rail and is never chilly. I turn on the shower from my phone in bed and it comes up to temperature.
My clothes are in wire baskets where I can see them all, but not from the bed.
My house will be kept clean and tidy by my robot army.
I can control the heating / ventilation / blinds from my phone, except I don't need to because they figure out what I need and make it happen.
The washer and dryer will be somewhere next to the bedroom, on the same floor, so the clothes don't have to travel far to and fro.
The kitchen will be just big enough to function well, and just small enough so I barely have to move to reach this or that.
There will be delightfully well-designed built-in storage for all the things, like the recycling next to the front door and the garden shoes next to the back door.
My sofa has high arms like a sort of extra comfy double ended chaise longue, so I can sit lengthways on it when I'm tired and be ultra cosy and supported.
posted by quacks like a duck at 3:43 PM on March 12 [6 favorites]


For me, I would simply love a space that was magically lit to whatever brightness I need in a given moment. My retinas are deteriorating so everything is either too dim or too bright.
posted by acidnova at 3:45 PM on March 12 [5 favorites]


Well, thanks to this fucking plague, I've had to stop going to the gym, because everyone there is gross and nobody cleans the machines and benches after they're done, and that's bad enough when it's just somebody's grimy sweat, but when it's grimy sweat plus INCURABLE DISEASE, I just have to draw the line. So I've been trying to be good about working out at home. Although, I mean, so much for the Disability Points I was earning by leaving the house.

Although I have, in fact, left the house! I am on a brief trip to Atlanta this week, where 31 people are known to have the virus. Tomorrow I will be in a room with strangers, expected to make some minimal positive social contact. I brought SO MUCH ATIVAN to this thing, I can't even tell you. I may slip into a coma. I just hope someone pours sanitizer on me once I hit the floor.

I have my mask, I have my gloves, and if necessary I'll also wear my hat and sunglasses for TOTAL HEADLY CONCEALMENT.

I feel very energized when things actually go wrong. Like...that's what the anxiety is for, right? I spend all this time worrying, and here's something I can do something about, finally, and it's going to be okay (I hope). Everybody's making the same damn jokes about this being the introvert's moment, but...well, yeah. Agoraphobia teaches you some good social distancing techniques. Although...it's also bringing out the compulsion to check and check and check. I constantly check the virus maps. Check for news stories. Check for metafilter updates. And I'm clawing myself bald, apparently, without realizing it. And talking in my sleep again. So the anxiety's still there, expressing itself in some interesting ways.
posted by mittens at 6:05 PM on March 12 [9 favorites]


I would like doors that lock themselves, so I don't have to get up in the night, or turn back when I'm halfway somewhere, to make sure I locked them. And windows that I could see out, but no one could ever see in.
posted by still_wears_a_hat at 6:07 PM on March 12 [2 favorites]


I love that your accessible vision features the bus, brook horse! Here in NYC the MTA is hard at work on redesigning our bus network. I love transit but long headways really limit what I can do, given that walking over half a mile or standing for long is hard for me right now (and maybe forever). Sometimes I feel triumphant when I manage to catch the last bus for half an hour or whatever, but it's also depressing. I would feel so free if buses came every 10 minutes or less and I could just show up at the stop and know that I wouldn't have to stand for long.
posted by ferret branca at 7:05 PM on March 12 [3 favorites]


I have several accessibility bugaboos.

Bathrooms, obviously. I live outside a major city and part of the reason I don't go into the city more is because every place downtown is so precious about their bathrooms. Seattle was worse. But as someone that can need to use the bathroom pretty quick, roaming from cafe to cafe hoping I don't have to buy a latte or something or get yelled at is usually something I don't want to deal with.

Seating. So many places don't even have A spot to sit down. So I go sit in the car. Which is me not spending money that I might happily do otherwise. Oh well.

This is unrelated to the accessible spaces topic, but for my folks that may not know about them, they sell shower chairs and stools you can put in the tub so you can sit down while you shower. They're great for things like if you have balance issues, if you frequently need to sit down, like, now, or you need a place to sit and do personal care that's not the toilet. Or if you just like to sit and chill in the shower. And you can just buy them on Amazon for like fifty bucks, you don't need a prescription or anything.

In terms of care, it would be nice if more medical things were friendlier to online service and email. My main providers use a portal that lets me email them and everything, but stuff like my CPAP refills come from this arcane 1800 number that you have to find and call every time you need stuff. They've improved lately to emailing you a link that you can click to refill your supplies when it's time...but it's literally just a link and you mash "Reorder." I feel like it can't be that hard to have an "Account" section where I could see what's coming up due. Frankly I order a lot of my CPAP supplies from Amazon and other suppliers and pay full sticker price rather than spending hours dealing with the "free ones."

One of my associates has been doing the same thing, but they need to talk to one specific person at that 800 number, but they're never at their desk and don't have voicemail or email so...welp. She was also just trying to schedule an appointment at a specialty clinic and their website had a nonfunctional phone number and email address, so we had to like sneak through the back channels of the communications tree until we found their phone number. And they still keep a paper appointment book. This drives me up the wall.
posted by Ghostride The Whip at 10:33 PM on March 12 [2 favorites]


A tip with shower chairs just in case is that if you have mobility issues and a fucked up water temp fluctuating situation be careful. I can't use mine since the last scalding chest incident. Highly recommend a tub bar and even sigh a sexy sexy hospital bed bar.

I dream about having an invisible chair. I could grocery shop if I could sit down but oh no we have to make the stores I can afford be 10 miles to just pick up milk! Ugh. Yes to bathrooms too.

Also goddamn do I not want to hear about a friend of yours that had my illness and cured themselves or have my illness and it's so tragic and devastating. Shut up abled people. And I don't care if they've been cured by boiling chickens feet and drinking the broth. Unless you are actually going to help me with the real thing I need help with be quiet. So tired of false promises to help. Sorry, I need help like every other human on this planet. We are not intellectual robots.

...ahem. I'm tired. I'm really also tired of being disabled and poor. My flu plan is just hope it kills me fast as disability doesn't pay enough and I'm not allowed to get my highly regulated meds for more than 30 days and no sooner than 4 days before the date. All the advice is for middle class people. Lol at the idea of WFH for my friends. Half of them don't have homes.
posted by kanata at 11:08 PM on March 12 [8 favorites]


Man, I'm frustrated about so many things. But here's a little one that just irks me about the medical system.

I need an ultrasound. It's probably "nothing." And by "nothing" I mean "Yeah, this will hurt and we will keep an eye on it but we can't do anything about it." But I still need to get it checked/start monitoring because I've been waiting and in pain for 6+ weeks.

Why the FUCK don't more clinics have ultrasounds? I mean, they make ultrasound wands that hook into iPads now or are wireless. It's also wrapped up in sexism I'm sure. Yes, I know you need a tech and/or doctor to do it and review results. But surely, more clinics or doctors offices have some sort of resource for that? I mean, my clinic actual has an entire x-ray room which is less common, but no ultrasound?!

Because I'll have to call my doctor, get the ultrasound ordered, call the hospital, schedule an appointment, go into the hospital, while all this shit is going on, get scanned, wait 2 days, then get results. Or I'll end up in the ER if things get bad. And that's usually 3-4 hours of waiting around just to get some pain management and be told it's "nothing."

I'm sure there are SO many times in which having access to a quick ultrasound would vastly reduce cost, wait time for diagnosis, accessibility to medical care and treatment, etc.
posted by Crystalinne at 2:12 AM on March 13 [4 favorites]


I'm experiencing peculiar visual problems in the last few months. Years ago I had Lasik and didn't have to wear distance glasses anymore but later had to wear reading glasses to see the computer screen. Then I started taking lutein and my eyes got better at focusing on screen distance without readers but at the same time I can't seem to focus on a printed page even with readers without having double vision. I have been having lots of problems on websites because the type for navigation is often very small or light gray! I love MetaFilter's color pages with lighter type very much because I can read our pages so much easier than almost any other site. But...

I think I finally have a Pony Request for MetaFilter. I've been commenting more lately and this text box that I'm typing in has a teeny tiny font size that I haven't been able to embiggen in the prefs. I do zoom in on the whole page but this box is still way smaller than the thread which I have set to a larger size. I make a lot of typos, esp punctuation because I just can't see my mistakes until it's posted. So I use edit button quite often. The live preview has bigger type but is a small box that is very crowded and somehow I don't see my mistakes until I've posted and its all spread out. And I still have to go back to the comment box and I can't tell a period from a comma.
posted by a humble nudibranch at 2:47 AM on March 13 [5 favorites]


the main accessibility feature i want is abled people who don't become utterly enraged when it is pointed out to them that something they like is inaccessible for disabled people
posted by poffin boffin at 4:51 AM on March 13 [28 favorites]


Again and again it comes down to believe other people have actual different lives than the one you are living and your experiences aren't universal. Listen to people, etc.

My house would also have that...star trek thing that makes tea appear... forget the word. (Ugh. My disability also steals my words) It can make anything and have no dishes afterwards. No standing.
posted by kanata at 6:07 AM on March 13 [5 favorites]


Replicator.
posted by cortex (staff) at 7:42 AM on March 13 [3 favorites]


Railings. Railings everywhere, especially in long corridors and public spaces. Why do orthopedic offices so often end up so far from parking?
posted by kinnakeet at 7:49 AM on March 13 [2 favorites]


In America - hearing loops in public spaces. Why don't we have them?

Hearing aids don't work very well in large or noisy places. But most hearing aids are equipped with a telecoil that can connect to a loop if a room/vehicle has one. A loop is just a string of copper wire that goes around the room, buried in the ground or the wall. You can hook your hearing aid up to it, and sound from the main source (e.g. lecturer, performer, bus driver, taxi driver, etc) is sent through the loop and then directly into your hearing aid. It's like having the person speak directly in your ear. The sound quality is really good, it's really simple technology, and it works incredibly well for folks who struggle to hear in these types of places. In Europe, they are all over - busses, taxis, churches, performance halls, lecture rooms. In the US? Hardly anywhere. All it takes is a little though about accessibility before you build something.
posted by Lutoslawski at 8:40 AM on March 13 [23 favorites]


Agoraphobia teaches you some good social distancing techniques.
ha, yeah.

Lutoslawski, hearing loops to me sound like absolute sci-fi but so simple and cool and i want them all over, now. that's amazing.

my accessibility wish would be non-busted up sidewalks covering the whole town and plenty of places to sit throughout. a disabled woman running for county board of commissioners wanted to have more accessible parks and fun places and she didn't get the seat, but i want to know what she had in mind. so many possibilities when you start thinking about it.

yay these threads! i was worried this space would move offsite and i'd miss out
posted by gaybobbie at 9:46 AM on March 13 [4 favorites]


As a hearing aid wearer myself, the T-coil loop suggestion sounds great except that they've been phasing out the T-coil switch in hearing aids for the past several years now. My hearing aids use bluetooth. While I would guess that most aids still use T-coil, that number is going to be decreasing.
posted by acidnova at 9:51 AM on March 13 [5 favorites]


Thanks for this thread!

I just discovered a term for one aspect of my visual impairment - it's called a Print Disability and I learned about it on archive.org when I was looking for an old edition of a book and the previews were hard for me to read even when I enlarged the images. I stopped reading large print books a while ago because I would get eye fatigue and headaches. I never read magazines, which I miss. (I have tried some magazine apps and had a hard time resizing the text; I am going to explore my library system's magazine system soon.) I read ebooks with a black background and white or beige text. I appreciate my library's wonderful ebook collection, but I wish it had more of the books I'm looking for. I use dark mode on this site and in many apps and in my browser if it's a long read. I appreciate sites that resize well. It appears that archive.org has resources for people with print disabilities, so I applied for help and am waiting to hear back.

I am coping with all things worldwide and personal by ignoring situations and hoping they go away.
posted by danabanana at 10:28 AM on March 13 [2 favorites]


Hey danabanana and anyone else with visual impairments, I run that program! It's for anyone with print disabilities (including things like dyslexia and cognitive processing issues, tho be sure to specify). You can avoid the wait lists for library titles, get access to a larger set of titles generally, and request EPUBs or PDFs without DRM if you need them. Happy to answer questions, feel free to MeMail or email.
posted by jessamyn (temp) at 3:03 PM on March 13 [10 favorites]


Thanks, jessamyn! I saw that my application was going to a/the Vermont library system and wondered how small the world is and it turns out, it's that small!
posted by danabanana at 4:15 PM on March 13 [3 favorites]


What I'd really like are cures for my disabilities, but short of that - I'd like people who aren't immunocompromised to approach hygiene as though they were. Wash your fucking hands like you just chopped jalapeños and need to take your contacts out, regardless of whether there's a pandemic - my immune system doesn't work properly regardless and it would be lovely not to get sick every single time something is going around.

As far as my dream architecture, I just want things to not have stairs. Why do stairs exist 30 years after the passage of the ADA? It's ridiculous.
posted by bile and syntax at 5:52 PM on March 13 [5 favorites]


I hope mental illness counts as disabled for this thread. I'm aware my illness doesn't make me more at risk for COVID, but it does make it harder.

Anyone else have OCD and finding it very difficult at the moment? The message "Be extra careful you don't make someone sick" has been playing in my head for the past thirty years, so this is basically my mental illness come to life.
posted by daybeforetheday at 1:05 AM on March 14 [6 favorites]


Daybeforetheday, it definitely counts.
posted by mittens at 5:16 AM on March 14 [2 favorites]


kanata:... and I'm not allowed to get my highly regulated meds for more than 30 days and no sooner than 4 days before the date

Repeating for truth. One of the countless errands I have to run today involves picking up my own refill of highly regulated meds, after having spent 40 minutes on hold yesterday with the doctor's office.

I'd love to Stay the Fuck Home, but those of us who take highly regulated meds know that nobody mails them to us. I have to go out into the world and try to stay 6 feet away from my fellow pharmacy shoppers at all times in order to stock up.

My dream architecture: Everywhere that there is a bus stop, there should be sidewalks.

Seems pretty damn obvious, but the fastest and most efficient bus line between my home and my job drops me off at a stop that is a 10-minute walk from my workplace. It's on a secondary road with narrow shoulders, deep ditches and no sidewalks.

It's like you're being punished for taking public transportation.
posted by virago at 7:12 AM on March 14 [7 favorites]


I wish, and I believe this helps all of us, is for tougher (and enforced) noise pollution laws, especially on machinery and vehicles. We're collectively going deaf, because of dangerously loud conditions that we encounter daily, and so much of it is avoidable.

I'm looking at you loud pipes. No. They do not save lives, but they do cause a deterioration in hearing not just to the driver, but to anyone unfortunate enough to be near them when they feel the need to unleash machine gun levels of dangerous noise when they mimic their favorite Fast & Furious scene.
posted by Beholder at 10:06 AM on March 14 [6 favorites]


I wish noise laws were enforced too, and that headphone/loud music laws in public spaces and public transit (laws that are already on the books in many places!) were more broadly acknowledged to be reasonable accommodations for people with sensory processing issues. For some people it might be just "I don't share your taste in music" but for others it's "that's acutely painful and I can't tune it out/it's pushing me towards a sensory meltdown."
posted by needs more cowbell at 2:43 PM on March 14 [4 favorites]


kanata:... and I'm not allowed to get my highly regulated meds for more than 30 days and no sooner than 4 days before the date

Omg yes. This is so scary right now. I have my pain appointment in a few days, you know, after the number of people infected locally doubles another THREE TIMES. My pharmacy doesn't have a drive-thru, and shitty new state law requires me to show my ID so I can't even ask a healthier friend to go for me.

Also, in yet another moment of having the worst timing ever, I'm set to move apartments at the end of the month. Here's hoping I'm not sick, and that the movers aren't either.
posted by bile and syntax at 3:28 PM on March 14 [6 favorites]


I'm nervous af when I run out next month as sitting in a drs office amidst all this is going to be lovely and even tho I have never needed a dosage change because they are highly regulated I have to go in person to the dr and pharmacy.

Now I also got to wonder if the stores will have food to eat at the end of the month that I can eat. I have to have gluten free as a celiac and need easy to make meals like toast and frozen meals since I can't stand some days to cook. Hope some rich people leave me some.

And I made a bad mistake today and did dishes on the same day I cleaned my bathroom and now everything hurts and my nerves burn and I hate this.
posted by kanata at 11:09 PM on March 14 [2 favorites]


Hey all finally had time to come back to this! Wrecked myself trying to stock up for isolation and cook at home instead of eating out or just eating frozen meals (of which I can only fit so many in my freezer). Think things are finally settling out, though it's still in flux whether I'll have to go to my various practicums next week. At least classes are online so that saves some spoons.

Love all these accessible space ideas. Really feeling those automated environment adjustments (heat, lighting, etc.) and noise laws right now. And seating, I spend so much time looking around for a seat and finding lots of places there COULD be seats, but aren't.

mittens, daybeforetheday, and others dealing with COVID-19 anxiety, sending lots of good vibes. I've been doing lots of thought challenging and distraction but I think that's mostly only been working because I've been able to isolate. When I have to go back out in public next week (the one clinic I'm at is open for the rest of this week and then closing, the other one has said nothing about plans to close) it'll probably get much worse.

Crystalinne, that's so shitty. It's horrible that we let people sit around in pain for so long. Good vibes to you too.

yay these threads! i was worried this space would move offsite and i'd miss out

The plan is to continue them monthly-ish! But you reminded me, if anyone is interested, we do have a Disability-Mefi Slack, we'd love more people to hang out and chat with. Feel free to post here or mail me if you would like an invite!

I hope mental illness counts as disabled for this thread.

It absolutely does! I use "neurodivergent" to mean mental illness, cognitive/developmental disabilities, etc. Will try and make that clearer in future threads.

the main accessibility feature i want is abled people who don't become utterly enraged when it is pointed out to them that something they like is inaccessible for disabled people

Fucking preach.

I'd love to Stay the Fuck Home, but those of us who take highly regulated meds know that nobody mails them to us. I have to go out into the world and try to stay 6 feet away from my fellow pharmacy shoppers at all times in order to stock up.

This will be me next week. I'm lucky in that my doctor doesn't require me to come in more than once every 6 months, but I'll still have to go pick up the meds. And I'm not even sure how I would go about getting a 90-day supply of my non-controlled meds w/o seeing my doctor first, so I'm just accepting I'm going to be in and out of the pharmacy because none of my refill times match up. Ugh.
posted by brook horse at 10:03 AM on March 15 [4 favorites]


kanata:... and I'm not allowed to get my highly regulated meds for more than 30 days and no sooner than 4 days before the date


YES THIS. I feel this so hard. I keep seeing all these things about "Get 90 days supplies of your medications" and I'm all, yeah, sure, I'd love to, because one of the things that really worries me is that they'll be a shortage, and I don't need that on top of everything else right now, but I'm legally not allowed to get more than 30 days. And I'm still 15 days away from even being able to refill. And yeah, good luck getting those meds delivered.

I mean, I get that it's good advice if you can take advantage of it, but I just want to scream every time I hear that recommendation.
posted by litera scripta manet at 10:46 AM on March 15 [4 favorites]


As to accessibility features, I'd love for every place I go to magically have a chair that I can sit in comfortably without it immediately destroying my back. Failing that, I'd like a way to look up in advance what kind of chairs exist at various establishments so I know in advance if I'm going to be able to sit in a particular restaurant/cafe/builiding/whatever. Of course, not that this matters that much right now given that everywhere is basically rapidly shutting down thanks to COVID-19.

Going to the realm of sci fi, I'd like to have a perfectly comfortable chair that weighs nothing, and packs up into a tiny little square that I can carry around in my pocket and pull out whenever I get somewhere that doesn't have a comfortable chair for me to sit in (which is pretty much everywhere, currently).

You know who has the worst chairs? Fucking doctors offices. So much time spent waiting in doctors offices. So much pain. And I love how they have me sit in this little plastic chair which is basically a torture device, and then they take my blood pressure and pulse and wonder why it's elevated. Um, maybe because I'm in so much pain? I even had one nurse be like, "We can wait for a bit so your pulse can go down" and I was like, "That's not going to happen while I'm sitting in this torture chair."

Railings. Railings everywhere, especially in long corridors and public spaces. Why do orthopedic offices so often end up so far from parking?

Strongly seconding this. And adding: I work on a campus with those giant 500 person lecture halls that is stadium style seating (but in doors). Railings would be so helpful there. I hate that my choice is between trying to manage the stairs without a railing or going a really super long way around to get to an elevator.
posted by litera scripta manet at 10:55 AM on March 15 [3 favorites]


I felt increasingly disabled during a few decades in my life when I had migraines constantly and undiagnosed celiac disease. Railings when they were available were often helpful. Fluorescent lighting and strobe lights were unhelpful. Some ideas: Being able to wear sunglasses indoors everywhere, or to be able to demand low light or even better yet a way to have darkness while waiting in line.

Bans on indoor odors and/or excellent ventilation systems that mitigate strong odors. Hand washing stations, as hand washing sometimes helped the throbbing temples. Also when waiting in line: pucks alerting you when it's your turn and where to go so that people in extreme pain don't miss their number/name being called.
posted by Radiophonic Oddity at 9:28 PM on March 15 [2 favorites]


Seeing all the stuff that could have existed for disabled and chronically ill people so easily, like with a weeks top of work, all the kindnesses and accessibility and little treats and remote classes and god, the oh poor you you have to work from home! things that are appearing now but were denied us for so long - like, it's great for everyone. It's good for society! Maybe it will last in the long run and people will be nicer when I have to cancel for illness or something and ableism will be solved a little (it won't), but oh god does it hurt so much.
posted by colorblock sock at 11:15 PM on March 15 [11 favorites]


Arg! Attention management issues! A nightmare. All the Thoughts are crashing in at once. I usually only post in these threads when I'm doing well. When I'm not doing so well, I can't string my thoughts together coherently, and so I stay away.

Yet here I am, laser focused on COVID-19, which hello I have been looking at you sideways for weeks, because sensationalist news cycles in attention-grabbing user interfaces have a way of messing with my head and now that we are all but locked down Autistic Brain has taken the wheel and is steering it down the analytical rabbit hole with Mental Mind screaming ineffectually from the passenger seat about wtf are we supposed to be working on again, and why can't you stick with it ffs? But no, Autistic Brain has now gone up a gear, and what's this about containment vs herd immunity and where can I find more data ooh look an article on S-FLU-1918. Meanwhile, husband and I both have runny noses, pretty sure that's a common cold but we have to assume it's not and so the confusion stacks up.

Since we're talking accessibility, not just for those of us with atypical cognitive styles, but for the world in general, this issue of distraction is one of the biggest problems we face. We know this, it's a no-brainer at a time like this. Look at us, we are making use of the most powerful communication tool humanity has ever seen, to connect remotely when we can't meet face to face, support each other. We can try not to make a drama out of a crisis, when things are moving so rapidly and the facts are not yet in. Instead we end up gawping at crappy reporting and venal politicians, because the machines have been designed to make sure we cannot look away.

And all of a sudden I feel better, as I often do when I can break that cycle and reach for scraps of optimism and gratitude, in amongst all the garbage of modern living, because I can come to a place like this and be reminded that we can be, we are better than this. Not always, but at least some of the time, and it absolutely does not have to as bad as the worst of it. We can survive this, things can be improved, and we have to keep believing it's possible.

Thank you brook horse for starting this thread. Thank you Metafilter for your basic UI, which is only mildly compelling and does not act like crack on my dopamine receptors. Thank you to the mods for a space where we can gather for nuanced, long-form, mostly civilised discussion. Thank you everyone, just for showing up.

Group hug!
posted by Elizabeth the Thirteenth at 5:21 AM on March 16 [3 favorites]


Yes, colourblock. I've been feeling really irritated and hurt over the sudden interest and importance in accessibility and supporting each other by abled people and couldn't figure out why. You sum it up great. It hurts.

Before this virus society (and a lot of abled people here) gave the impression that to need support, to need to cancel, to need help was a step too far. Disabled people being people you should dump because they are parasites or going to drag you down. And now suddenly people and stores and business can magically reverse. If that makes sense. Now suddenly helping each other and staying home are good things. I don't know.

I'm feeling very hopeless about the world and the future. I truly just wonder what the point is and why some people get tons of shit piled on them and others don't. You know, the small useless questions.

Hopefully I suppose that once abled people see the benefit in these things they will want to keep them.
posted by kanata at 6:54 AM on March 16 [7 favorites]


I’m facing a national confinement order in France from tomorrow, why when I stay home as a chronically ill person I don’t mind, but now I feel so restless?
posted by ellieBOA at 12:36 PM on March 16 [4 favorites]


I have so many thoughts on all of this but the one that is loudest at the moment is that I would like abled people to understand that it is not a binary condition between able-bodied or using a wheelchair. That not all disabled people are unemployed, or on the disability pension, or have carers to do things for them. There are so many examples of this assumption, but the one which is currently giving me the massive shits is that the supermarkets here have stopped doing online deliveries - because it's obviously a luxury rather than the only way some of us can get groceries - and have reserved an hour for the elderly and "people with disabilities" to shop amidst all the panic-buying and chaos. But only those with seniors cards or government-issued disability cards (like pension or concession cards) will be allowed in. So people like me, under 65 and still working without any government assistance, but who cannot navigate a supermarket without a mobility aid (and even then with excruciating pain requiring frequent stops) will be shit out of luck. I have no family. I have no carer. I have a carefully constructed life based on things in society working, and that's falling apart. I'm not in immediate need of things but knowing that once again I will be slipping through the cracks because I'm not disabled ENOUGH by some stupid standards, despite every fucking day being a struggle... Well. Rage and misery and anxiety are duking it out right now.
posted by Athanassiel at 1:08 PM on March 16 [12 favorites]


I am privileged enough that I am not in as tough a spot as many. The thing right now that is really messing with me is my complete lack of my normal routine. I depend on it so much to keep me feeling sane, organized, able to do my life, and now that it's in a state of complete upheaval I am flailing. I almost feel like I need to create some kind of covid-19 schedule for myself because I already kind of feel like I'm losing it. Normally I work 4 days a week, the same hours every week, see certain people every week, and now my work schedule is unknown and will very likely go to extremely limited hours. The anxiety of the great Unknown in all this is jangling my nervous system like marbles thrown against a mirror (hat tip the Mountain Goats.) I guess I answered my own unasked question though -- should make schedule. If it would help anyone else to look at my ideas for a schedule or for someone to help you make one for yourself, let me know. I also identify as a synergetic witch, and if anyone feels in need of spiritual support/guidance, please feel free to reach out to me. I do divination, stone work, intention setting, and various other things. Much love to all.
posted by fairlynearlyready at 4:24 PM on March 17 [5 favorites]


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