i was trying to get some advice on recognizing pressure sores from wheelchair use yesterday and ive been yet again reminded of how hard it is to get effective medical care as a black person. the main early signs of pressure sores discussed are reddening of the skin, or blanching (press your finger on the spot, it turns white, and if it stays white when you release its blanching), neither of which happen with my skin tone. ive found out that general discoloration can be an indicator for darker skin but it isnt as obvious as the reddening on white skin, and that info is much harder to find.

i was able to find some resources on skin conditions on darker skin (this is a database of images of skin conditions and does have example pictures on darker skin), but i still feel that a large portion of doctors out there are completely unaware of how different conditions manifest in people of color, which can lead to a huge gap in care. did you know pulse oximeters are often very inaccurate on dark skin? what are we supposed to do when the basics of medical care dont include us? poc (especially black people) either get the wrong kind of care or just don't get any at all. people genuinely die from this sort of thing. what are we supposed to do?

In the AO3 Demographics Survey 2024 - an unofficial demographics survey of 16,131 AO3 users - 78% of respondents reported having at least one disability, neurodivergence, or other health condition, including 58% experiencing mental health conditions, 33% experiencing ADHD, and 27% experiencing autism.

To see more analysis, including full transcripts of all the data and comparisons to disability statistics for the general US population, please view the full results on AO3.

it's just. unfortunately. a common occurrence for disabled people to have not at all been informed about their own health. including diagnosis that they have been given. i think the ideal image of what happens when someone is diagnosed is that they are told what they're looking for before testing, consent to go ahead, and then are sat down with and have the results explained alongside with plans on what to do next. it's not like this can never happen but when you talk to disabled people you find out that a lot of the time, much more than it should, people are told jack shit. people aren't told about their diagnosis, nor they're told that something was diagnosed but not explained to what that fully means. or they're diagnosed and then continuously offered treatments that are detrimental to people with that specific diagnosis. some people only find out they were diagnosed at all after months or years. it's ridiculous

📷: @twentysomethingspoonie

When the disability disables you, (⁠╯⁠°⁠□⁠°⁠）⁠╯⁠︵⁠ ⁠┻⁠━⁠┻

When the chronic illness comes back chronically, ┻⁠━⁠┻⁠ミ⁠＼⁠(⁠≧⁠ﾛ⁠≦⁠＼⁠)

When you got used to 'not so bad rn' but then it's gets 'bad rn' again, ─⁠=⁠≡⁠Σ⁠(⁠╯⁠°⁠□⁠°⁠)⁠╯⁠︵⁠┻⁠┻

WAIT THERES PEOPLE WHO ARENT IN PAIN ALL THE TIME

BSD DISABILITY WEEK PROMPTS (2024)

Thank you all so much for voting on the poll. The event will be happening July 14th-June 20th. Here are the prompts. There are two prompt lists, one with general, more vague prompts, and one with more specific, pointed prompts. Feel free to pick and choose which ones you use.

General prompt list / prompt list A:

Physical Disability - July 14th

Mental Disability - July 15th

Experiences with ableism - July 16th

Mobility Aids & accommodations / accsesability - July 17th

Chronic Illness - July 18th

Self Care - July 19th

Free Space - July 20th

Specific prompt list / prompt list B

Hypermobility - July 14th

Blindness - July 15th

Deafness - July 16th

POTS - July 17th

Neurodivergency - July 18th

PTSD - July 19th

Genetic Disorders - July 20th

Note: Please keep in mind that you do not have to follow these prompts, or use them on these days. I'm really sorry that i couldn't fit every disability on here, i did the best i could to make a pretty wide range of prompts. If you make any disability related fan content feel free to tag it for bsd disability week 2024!!!

hi I'm back with more disabled etiquette for the ableds

if you're able bodied and see a disabled person very clearly walking in a straight line on one specific side of the sidewalk please be the one to dodge them

people with vertigo or positional problems, blind people, people with uneven gaits; they may all prefer to walk next to a wall to orient themselves and/or avoid bumping into others as much as possible

when I'm out with only one crutch or my cane, I always try to have it on the side of the street that other people don't walk, as to avoid people kicking it as much as possible

not to mention, a lot of disabled people, specially wheelchair and crutch users, can't easily swerve to avoid you

also, disabled people may be familiar with which parts of the sidewalk are more broken or difficult to traverse and have an established path we walk to minimize falling potential and/or pain

also please please please keep in mind that almost walking into a disabled person and then giving them a wide swerve is still quite rude, unless the street is packed and you have no choice please just start walking on the other side of the sidewalk when you see us, which is probably like half a block away. there's no need for you to pretend we're invisible until you almost hit us

thank you very much

Some people use different mobility aids on different days! This could be for accessibility, symptom or loads of other reasons!

ID in Alt

feel like…. some, even doctors, not realize.. when you multiply & severely disabled, your existing symptoms (from another disorder n disability) may mask new symptoms.. either mask severity or mask symptom altogether

or, accommodation & aid used for existing symptoms/disability, also help for new symptoms, so new symptoms less obvious less outward debilitating compare to others with similar symptoms

for example.

am full time wheelchair user with powered mobility device in some way (powerchair and power assist manual)… when breathing difficulties started, mild in comparison to what could be, but disruptive to everyday… but because not exert much, not need do much to move because wheelchair with power. not as outward disruptive looking as someone same breathing difficulties but walking everyday (so exerting). so doctors didn’t really have sense urgency, even though new symptom not match existing disability

am nonverbal. all the time. but able make noises n grunts, quite expressive, is very important way communicate of mine. but recently notice, those quieter, not on purpose. n harder than usual. paired with other new symptoms, think something new unrelated going on. but, where even start assess for this? all usual signs & symptoms checklist n assessment of stuff like dysarthria, is on people with at least some level verbal speaking abilities. not someone who already nonverbal.

This week I'm forcing myself to rest. I've been neglecting rest for too long and I'm worried that it is going to start having long term negative effects on my health. If you have been waiting for a sign to slow down, this is it. Rest with me, even if it is just for a little while. 🐢

Maybe one of the hardest things in being chronically ill is the isolation. The loneliness. The lack of understanding, listening, and caring from the people around us. Having to hide parts of yourself (applicable to anyone, but a thought for mentally ill people), and having to deal with selfish ableists. Good support systems are rare, and most people aren't emotionally/socially educated at all.

I wish you'll find your support system in your own obstacle course. Stay strong, you shouldn't have to suffer, you deserve to be happy. 💜

Do You Know This Disabled Character?

This isn’t specific to any media. If you know only one version vote ‘I know them’.

Charles Xavier / Professor X is paraplegic and a wheelchair user.

I'm getting a little tierd of the idea because amputees get more representation in media, it means rep for our disability is better and we "have enough"

People are right, we do have way more rep than really any other disability, im not going to deny that, and ive joked before about how often people write amputees without even realising it. So you would think, by sheer numbers, we should have at least some good representation, but by-and-large that is not the case. Legitimatly, the closest example I can think of to point to of good amputee rep is Full Metal Alchemist Brotherhood and even that uses multiple tropes I hate (the miracle cure/quest for the miracle cure, the almost perfect prosthetic replacement/forgetting the chatacter is an amputee until it breaks or needs repairs, refusal to call prosthetics, "prosthetics" (automail), the amputee who can't do anything without a prosthetic) and they call Ed a slur for another disability (m*dget) CONSTANTLY. I love fmab deeply, it legitimatly helped me feel seen and represented as a childhood amputee in a way no other show has even come close to, and when it gets it right, it gets it really right, but it's also very far from great and should not be the best example I can think of. Especially nearly 15 years after it released...

A big part of the reason why I don't read many books anymore is because of the sheer amount of books with downright offensively bad amputee rep, some of which were touted as good by people with other disabilities and were recommended to me as good examples. others times, I wasn't even looking for books with amputee/disability rep, it just popped up. It has ruined one of my childhood hobbies for me. Ive tried to get back into reading again as an adult but it hasn't gotten better in that time i was away. I was kicked out of 3 different scifi writing groups on facebook and reddit for asking people to remember "cybernetic enhancement" users are amputees - a real group of people, and maybe debating weather or not we're less human isnt great, and for pointing out seeing those discussions every day was making me feel pretty unwelcome in that space (yes i know, "real" cyberpunk isnt trying to say that, i had to turn notifications off on my post about the topic, it doesnt change the fact that newer creators in the genre dont seem to get that bit, that ive seen cyberpunk writers in these spaces say that debating weather people who loose more parts of their body were less human was, in fact, their intent but they hadnt even considered the fact this made their chatacters amputees, it doesnt change the fact that these tropes, intentionally or not, help make those spaces hostile for disabled fans/creators, especially amputees).

But yeah, I should be thankful I get more rep than other disabilities, no matter the quality, right?

It doesn't just stop at being me being made uncomfortable, though. The sheer, overwhelming amount of amputee chatacters with "perfect prosthetics" has had a noticeable impact on how we are perceived irl. In my lifetime, the general idea people have about multi-limbed amputees in particular has gone from "literally the worst thing that can happen to a person and the worst disability to have" to "is it even a disability? The prosthetic fixes it". These are both wildly untrue and harmful ideas about my disability that were both perpetuated by media, but now that the second one is taking root, it's causing real problems. I have not been shy in talking about how I have to fight to maintain my NDIS funding every time I get something done with my prosthetics, and had to get my prosthetist to sign off, twice, that my fancy prosthetic knee that costs the same as a higher-end new car ($125,000 AUD) is not, in fact a cure and I still need help with other things. It took me nearly 2 years to get a new wheelchair because they didn't understand why I needed it if I had the prosthetics - which to be honest, is not comfortable for me to wear, let alone use all day every day. Guys this isn't just assholes on the street or on twitter saying dumb shit, it's the people in the government body who decide how much funding I get to help with my disability who beleive it. People who have very real control over my life. It's not entirely the media's fault, but when the sheer, overwhelming majority of representation for people like me confirms that belief, it's hard to ignore the possibility that these portrayals are contributing to it, you know?

Which makes it so frustrating when I come on here and see other disability writing advice blogs saying to not write amputees because they have so much representation already. We do, I can acknowledge that, but the vast, vast majority of it is shit, and no one, not even other disabled people, are listening to us about it. And what makes it even worse, is the people they're advising to not writing amputees are the creators who care enough to be doing the research. They're the ones willing to listen, to ask questions. They could be the start of the positive change. But instead they're advised to not even bother with us.

And don't get me wrong, other disabilities ARE under-represented. There are so many disabilities, including some I have myself, that I've never seen represented as anything other than the butt of a joke. There does need to be more reprentation of disabilities other than amputation and limb differences. 100%! but can you please talk about that without saying "amputees have enough"

This isn't even touching on how amputees/people with limb differences who dont/cant use prosthetics, or even folks who use prosthetics sometimes but not others, are almost never represented unless it's for pitty-porn, or how the non-fictional media's (news outlets, etc) portrayal of amputees in particular is used to justify hurting very real, very vunderable people but this rant is long enough and honestly, ive got enough thoughts to make whole other posts on those subjects. That second one in particular deserves its own (more thought-out) spotlight and shouldn't be a footnote in a frustrated rant post lol.