five-thousand-loaves-of-bread

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This whole thing about scanning your face to prove tour age is making me remember, in 2018 while out in paris we got our wallet stolen during a particularly busy night at a lesbian bar. It was very late and with no money to buy metro tickets we were effectively stranded, but some people helped us and we ended up staying the night at a really sweet older man's place. His face was deeply scarred and he was missing an eye. We chatted on our way and he told me about his life, probably to help calm me down. He explained he had been stuck in a house fire 20 years ago and had had multiple rounds of facial reconstruction and a skin graft, but there's only so much surgery can do so he just learned to live with it. I remember he said he liked the queer bars because they're the only place people don't really stare at him.

At some point I took out my phone, and at the time I was using face unlock. This prompted him to tell me all the ways this technology doesn't work on him. How his phone selfie camera doesn't focus right because it's not a detecting a face. How he had to update his ID the old fashioned way, because the website kept rejecting his photos. And how it was becoming more and more common, and how it was making his life way harder.

This was 7 years ago, and now whenever I see this sort of technology I think of how that guy can't use it. And how house fires are pretty common, and how anything from being born this way to a skin condition to heavy tattooing can probably cause the same issue. Can these people get age verified ? Will they just lose access to all social media, which are increasingly necessary in society, if this becomes the norm ? These are people who are already driven out of public spaces due to how they look, and they're getting pushed out online too all in the interest of companies wanting more money.

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i'd also like to acknowledge just how difficult it is to interact with other people when your frustration tolerance is low and your ability to regulate emotions is impaired. people often are combative or have a point to prove or don't want to be wrong in a certain situation. they don't come into an interaction assuming they should accommodate for disability or be willing to do so. people are expected at every point in an interaction, to engage calmly and politely and have objective points to make. that's the sort of culture that's been cultivated if you want to be taken seriously. but developmentally disabled people, intellectually disabled people, people with brain damage - all sorts of disabled people can't manage it. sometimes someone will meltdown and say they hate you and tell you to go away for a mild disagreement. even if your intentions are well. it's meaningless cruel to nitpick at the demeanor of people who struggle with self-regulation especially in cases where the situation is stressful.

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sending acknowledgement to the developmentally disabled people who struggle with processing their own emotions. where having an emotional response to something itself can cause overwhelm and meltdowns. where even being too happy or too excited will be too much to process and end up causing distress. for every one of us with a frustration tolerance that's incredibly low. it's fine. that's just part of the disability.

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here let me write it this way

I have severe ADHD. I was diagnosed with ADHD when I was 5 years old because my ADHD was obvious and disabling even at that age. when you talk about severe ADHD you talk about me. you cannot tell me anything new about what severe ADHD looks like. I have lived it, I live it every day.

ADHD (even severe ADHD) is actually not the same thing as a life threatening physical disability.

ADHD medication, while being very important (including being very important to me) is not the same kind of important as insulin, chemotherapy, immunosuppressants, anticonvulsants, etc.

stop comparing your medication that you will not die without to the above medications ^^^

this sounds absurd when you write it this way and yet this stance somehow has caused 18 quintillion arguments on my blog.

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disability and chronic illness and whatnot are really complicated sometimes and can result in a lot of complicated, messy feelings, but the pervasiveness of ableism and the fact being disabled doesn't exempt you from participating in it (yes, including on a violent interpersonal and an also an institutional level, as there are disabled people that work in the very healthcare system that neglects and violates many of us! there are disabled people that work as caregivers who are capable of abusing that power!) makes it important to discern whether you need to be airing out those messy feelings in public vs. working through them on a private level, not just for your own sake

people with terminal cancer, ALS, etc. aren't somehow "luckier" than those with PASC/long covid for having research and awareness and they aren't automatically treated well or taken seriously despite what one might assume

obligate wheelchair-users aren't "lucky" for having no choice but to navigate a world that is built for ambulatory people with a mobility device that is expensive/difficult to acquire, requires routine maintenance, can wind up damaged and destroyed, etc. and bars them off from being able to participate in all the same areas of life as the able-bodies because - again - society is physically constructed with ambulatory people in mind

people with visible disabilities aren't "lucky" for being recognized as having something "wrong" with them by other people (because "visible disability" does not necessarily mean others thinking "oh that person is a real disabled," it's more complex than that)

someone having a very visible aspect of their disability like a limb difference doesn't mean their disability can be reduced to just that limb difference (e.g. there are a lot of ways someone might end up medically needing an amputation, including forms of chronic illness, like diabetes leading to nerve damage, leading to infected wounds that then can't heal properly!)

having assumptions made about your intelligence or "mental age" by strangers based off visible aspects of disability is 100% a form of ableism but there are ways of discussing and addressing this that don't contribute to ableism against people who are genuinely intellectually disabled (some of whom might have the same condition you're talking about!)

autistic people who require caregivers for survival aren't somehow privileged compared to autistic people who can live independently but get burnt out, living independently = not having to worry about getting abused or violated or neglected by people you have no choice but to depend on to feed you, bathe you, attend to medical equipment, clean your living space to prevent bugs or mold, etc.

i also highly doubt sensory disabled people are automatically taken seriously in terms of "oh they're actually disabled" either, even people with total vision or hearing loss, so excluding sensory disabled people from the label of "invisible disability" (in cases where it isn't accompanied by visible disability, like strabismus impacting vision) based on that is purely something out of ignorance

too many people in online disability spaces (physical or psychiatric) actively spit on other highly vulnerable groups of disabled people by saying/doing these things and it needs to end, especially as the overton window continues shifting to the right when it comes to ableism in the western world and elsewhere

and don't sit around waiting to be corrected and instead deliberately expose yourself to the experiences of disabled people whose lives are unlike yours and are continuously shut down in online (and offline) spaces, which is part of the reason these prejudices and misconceptions exist in the first place; if we don't have solidarity, then we have nothing

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you only need say one thing then the world help repeat it for you n then the cognitively disabled abused person help you do the rest bc they can’t fucking tell 💖

it’s very fun using someone cognitive disabled as punching bag they’re so easy to gaslight it takes half the effort double the effects 💖

(sarcasm)

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it’s very fun using someone cognitive disabled as punching bag they’re so easy to gaslight it takes half the effort double the effects 💖

(sarcasm)

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Not everything that makes you uncomfortable is actually causing you harm

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high support needs (HSN) people hidden from public in every way from very start of life. segregated in classrooms, be put in self contained special education, or straight up not able go school. we locked away, be stuck in hospital, institutionalized. we barred from outside because everywhere inaccessible to us with our very intense n wide support needs that can’t “suck it up”, can’t temporarily ignore so we can participate now only to pay price later. intense n sometimes even violent ableism we face lock us inside. n those of us who support need not be met simply. dead.

high support needs disabled people hidden from public.

away from nondisabled people. but also away from lower support needs people.

so many lower support needs (LrSN) people, with support needs low enough that can be among nondisabled mainstream society, but with support needs high enough to struggle, have unmet needs, n suffer, in that society.

lower support needs people often have support needs low enough but high enough that, have higher support needs compare to people around them—nondisabled people of mainstream society with no support needs(*).

so, people with LrSN may think they have highest support needs out of all, because is what they can see—because anyone with higher needs, forcibly hidden away from world they live in.

n with support needs low enough to be “useful”, people w LrSN recruited to continue ableism against HSN people—to continue lock people w HSN away from public, continue our segregation, continue not see us, continue pretend we not exist, or continue genuinely believe we not exist.

while their support needs will never be low enough be fully accepted into part of mainstream, nondisabled world.

* so, everyone receive support. we live in society. no one truly independent. any time nondisabled person vent to friend, use any service, buy food they didn’t make or grow themselves. that’s support from others. but those normalized. those the norm. those included in definition of “be independent”. — versus disabled low/mid/high support needs people, we need support in way outside that norm. so while useful talk about how everyone get support some way or another to reframe perspective… it still important talk about current reality of. people that get normalized support n call them no support needs n independent, n people who need help in way that go outside that n be treated badly for it, “have support needs.” if that make sense.

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like it would be convenient if you could just assess someone's support needs by checking yes or no on "do they struggle with bADLs" but it's not that simple. for example, toileting. you can struggle to wipe and still be low support needs. certain tools or products help people wipe independently even if they can't do it without those tools. that's not high support needs. there's so much to consider. if someone needs toileting, can they recognise that? that is, will they be able to tell they need to go? and then if they can recognise that, will they be able to communicate to someone that they need to go? but it's not even that simple. if someone can recognise and then communicate that they need the bathroom, can they bring this up unprompted? or does a caregiver need to periodically ask them if they need to go to the bathroom, and they will never communicate it without those prompts? can they be calm and allow people to give them the help they need to toilet? will they hurt themselves in the bathroom if left alone? needing one person to remind you to go to the bathroom because you forget is an entirely different experience than needing someone to prompt you, or even decide themselves it's time for you to go, and then have a caregiver, or multiple, support you through every step of the process of toileting. the support needs are apparent before you even get to the bathroom.

i use toileting as an example because most abled, and many disabled people think that having anything but complete independence with toileting is a huge big deal that indicates a severe lack of ability. they constantly talk about how they wouldn't want to live if they couldn't wipe themselves after the bathroom. and there's many, many, many, more people who struggle in some way with this bADL than ever gets talked about. it's quite normal even. but i think people are so distracted by surface level ableism they can't even conceptualise the level of care someone might need to do a single activity of daily living.

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online here tumblr instagram everywhere esp autism community have pretty skewed idea of what low mid high support needs actually look like

that be something am think of every time someone ask if they mid or high support needs

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^^^ yes yes if all you know about disability support needs be learn from self posting social media then you don’t really know full range what HSN look like. even if yes *some* HSN people do post online. but that just that: *some*. a few.

bc think abt: who can be online who get be online, independently, who have enough outside help be online, who not have it, who can’t do it even with help.

ngl going online, especially on tumblr, is wildly inaccessible for huge swaths of people. i think a lot of people with high support needs would need a dedicated helper to facilitate going on social media. i'm not saying it's impossible that someone with HSN could go online but i don't think people realise how wildly inaccessible social media is. and the amount of distress it causes can drive people who make it away

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it's crucial that you untie "special interest" from "expertise". "it's true just trust me bro" doesn't have any extra weight when you add "I know because it's my special interest". you are not immune from falling for misinformation, and you are not immune from sharing misinformation. not to mention the fact that "amount of knowledge" isn't even a requirement for something being classified as a special interest lol!

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mm guess who got mad bc flinched 🥰💖✨

everytime every. single. time. repeatedly. when am naked n vulnerable (like showering) “caregiver” always on purpose do thing that they know annoy me hurt me (actually idk if they know bc “just be difficult on purpose make whole deal out of nothing” sentiment) like pinch pimple bc it satisfy them

n then get super fucking annoyed n mad n all victim n “look at all stuff am doing for you you at least owe this to me” when am communicate in only way that can AKA angry annoyed noise n jerk

n that evidence of anger issue n disrespect n whatever the shit

life of be nonverbal HSN

hope spontaneous combustion

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… guess who realized they may still have abuser in contacts in old popular texting app haven’t used in 4+ years you just begin use back n posted like 2 posts on n they saw like guess who completely forgot that be possibility guess who feel fucking sick

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This disability pride month I'm BEGGING you to acknowledge and care about the people in this community who often fly under the radar when it comes to positivity and information. People who require equipment to live, like ventilators, pacemakers, and feeding tubes. People who are bedbound. People with visible differences. People who have disabilities caused by things like substance abuse, overdose, or self harm. People with conditions so rare that they've never met someone who has the same one. People who need full time care and have to have help to use social media.

If you want to support the community, that means supporting all of the community. Disability pride means being proud of every last one of us, and making sure everyone feels heard. Make sure to amplify the voices of those who need it this month, and ideally for the rest of the year too.

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One thing I wished more people grasped is that wheelchair use is a full spectrum rather than just ambulatory/nonambulatory (and some non wheelchair users can't even get that right!)

Some people need a wheelchair for isolated outings like Disney or the mall.

Some people need one to leave the house

Some people need one for a couple months at a time on and off but can get by without it most of the time

Some people can take a couple steps but that's it

Some people have to stay in their wheelchair and can't move to a couch or regular chair.

Some people need extra equipment like slings or transfer boards to get in and out of their wheelchair.

Some only need their wheelchair on bad days.

All of the situations I just described are based on real people I know (and me!) and I would bet money that all of us have dealt with bullshit from people who don't understand that it's a spectrum.