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I’m going to be a bitch for a second, but when I’m conversing with someone newly diagnosed with MCAS/POTS post covid and they complain about “the long wait” to get diagnosed and that “long wait” is 3-4 months my entire brain blue screens.

Like on the one hand, yes those 3-4 months must have been so, so scary and I am so unbelievably glad we’re in a place where doctors know enough to reconize it now. Like truly, I am so sincere I am so happy for them.

But I’m also just like... 30 years, man.

I spent 30 years being told from the age of eight I was manifesting my allergic reactions through anxiety by health care professionals.

Fuck, five years ago when I was starving to death from how severe my MCAS had gotten an allergist told me it was anxiety.

And you got diagnosed in three months.

MONTHS

MONTHS

AND YOU’RE COMPLAINING

I’m not mad at them. I’m not. I’m just sad for myself.

But also, hey, yeah. If you come into an MCAS forum and wonder why a bunch of the old timers get upset when you complain it took months for a doctor to listen to you, this is why.

It's not that you deserved to wait longer. It's that we didn’t either and and sometimes even good changes can unearth a world of hurt.

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ok not to be that guy but like. labor rights and working class rights can coexist with 24h services and late amenities. its certainly hard to do so without worker exploitation in this political and social environment, it’s not a conflict likely to resolve overnight. but 24h services are important and especially valuable to those of us that are disabled or are on a different circadian rhythm. in fact more professional, health, and government services should be available or at least possible to work on asynchronously (if applicable) during late or odd hours, while workers also get sufficient pay for their labor and proper consistent scheduling. this would be much easier on the workers with night schedules if the entire professional world didn’t grind to a halt at 5pmEST

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Pixie be AAC device user is not a young child . and . but all AAC device vocabularies exactly same as the for children . no words for relationships and more “adult “ conversations .

have not seen any AAC device vocabulary have words for any “private” body parts . can not tell caregivers about having a problem with some “ private “ body part . no pages for to talk about serious brain “trouble” either .

we people what use AAC devices are very most likely to be hurt by bad people because them people know we can not tell really what happened .

AAC device businesses need to do better. speech pathologists need to do better , and caregivers , and parents , and guardians . all need to do better .

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friendly reminder that you don't need any diagnosis or disorder to adapt your routine to accommodate you! sit down in the shower. brush your teeth and wash your face in the shower. bring a chair to the kitchen while you cook. use unscented products. your routine should be built for you.

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There are three main models of disability that are in common use. The moral model, the medical model, and the social model.

You may not have heard of the moral model before, but if you are disabled, you have felt the impact of it. The moral model is disability as a failure of character. It sources the problem of disability in the character of the disabled person. It's the people who insist that if you just tried harder, were better, had a better attitude, that you would no longer be disabled. It is a model that is used by ableists in order to conceptualize of disability as a failing of the individual. An extreme example of this mindset are the Christian Scientists, who believe that all illnesses and disabilities should be healed by the grace of their god and that if you are not healed, something is wrong with you. It is the the most cruel of the models, and the least successful at assisting disabled people.

The medical model is the model used by the medical establishment and by those who put their stock in medical authority. It sources the problem of disability in the body. It measures disability against a theoretical average person, and seeks to make disabled people match that average person more closely. This model works very well for disabled people with disabilities that can be measured, have a potential treatment plan, and want their disability gone. It does not work very well for people who do not match all three criteria. If they match the first and second but not the third, then strict adherents of the medical model often fall back on the moral model, stating that they are stupid, lazy, or selfish for not being interested in being cured. This also often happens if treatment fails to improve the condition of the disabled person.

The social model is a newer model, largely designed by disability activists and scholars and often defined in opposition to the medical model. It sources the problem of disability in the interaction between the disabled person and their physical and social environment. It argues that the solution of disability is to change the environment so that impairments are no longer an issue. This model works very well for disabled people who consider their disability not to be an issue when fully accommodated. It does not work well for people who consider their disability an inherent impairment and/or desire a cure. Strict adherents of the social model often fall back on the moral model when considering these people, stating that they are short-sighted or that they worship the medical model. These are the people who state things such as that depression would not exist in a world without capitalism.

When a disabled person fails to behave as expected by the model a person has of disability, the moral model is almost always the fallback position, because many people cannot conceive of why someone would disagree with them other than a lack of good character. This is a problem, because the moral model proposes no solution but to ignore or abuse the disabled person until they behave as expected.

Another notable interaction is that adherents of the medical model can often be persuaded to support the more traditional parts of the social model, such as providing large text resources to people with impaired vision, so long as there is empirical research backing it. However, they rarely support more radical arguments that challenge how we define disability and how society should be structured or restructured.

All three models have major failure points. The moral model fails every disabled person it is applied to. The medical and social models both fail different disabled people when adhered to strictly. The best approach at the moment seems to be hybridizing the social and medical models, so that they cover each other's weak points and fit the needs of the widest spectrum of disabled people. The main barrier to this is that they are often defined in opposition to each other.

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The Audio Issue (mcsweeneys.net)

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Please do not leave deaf, disabled, mentally ill, and autistic people out of your conversations about police brutality.

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"low support needs disabled people are often not believed to have a disability at all and therefore struggle to get accommodations."

"high support needs disabled people's accommodations are often seen as 'too much' and therefore are not met."

"neurodivergent people's needs are often dismissed because nothing is physically wrong with them."

"physically disabled people people often cannot physically access buildings and people refuse to do anything about it."

"invisibly disabled people are seen as lazy by society."

"visibly disabled people are ostracized from society."

IT'S ALMOST LIKE THERE'S NO SUCH THING AS A SOCIALLY ACCEPTABLE DISABILITY

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This is not like a fully completed thought but yk

So I've done my first aid + CPR a few times. And every single time I try and bring up scenarios for fat folks

Specifically like 'what if someone is too large for me to wrap my arms around then to do the heimleich'

And its incredibly rare I get a decent answer.

How absolutely insane is it that me, as a fat person, is asking how to have MY life saved or to save ANOTHER life, is an impossible feat if someone is fat.

Most of the time they tell me to 'just try anyways uwu'

There has got to be a better option.

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ok so obviously all disabilities valid all disabled people should be allow talk about experiences and struggles even if another disabled person have worse but like also

don’t think like. highly conventionally successful disabled person who get live relatively normal life with their non terminal illness. should be allow go on speak for & speak about severely disabled people / with terminal illnesses / etc. as if their experiences “basically same thing” because both disabled. dont think it ableist point out these two groups clearly have different lives different experiences different relationship with disability. actually think it ableist to weaponize own disability status to speak for more marginalized group.

of course there going overlaps between two, like someone can be highly conventionally successful and have terminal illness for example

but for example am think about like. white PhD middle class published author who disabled but live independently who clearly can hold job (and highly rigorous education) and very high cognitive abilities. clearly not same & should not get speak for, idk, someone nonverbal severe autism severe ID with no functional communication who need 24/7 supervision. or kid with childhood dementia who lose ability almost moment they gain them who may die before even reach two digit age & lucky if get live to adolescence. like idk i think you just shouldn’t.

of course that PhD disabled person please talk about your experiences, academia highly gatekept very inaccessible need all feminist disability justice disabled people voices. but moment pretend you know it all pretend you get access to all disability, you just ableist.

and if you hear “some disabled people have it worse/more severe than others” and immediately think am pro eugenics think am advocate for kill all disabled people who “bad” quality of life, or somehow need other people feed you wipe your butt mean you can’t live happy fulfilling life, or am say milder disability deserve less or something something about invisibly disabled people or immediate “what about me”ism or idk whatever you all say, when there never ever word mention about that. idk, you the one who drew connection, not me. that on you.

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Seeing people say that arthritis isn't disabling in the year 2023 sure gives me some. . . not great feelings. Like yeah, cool, thanks for completely undermining the decade or so of horrible pain I've experienced, my gradual loss of mobility, the constant fatigue and confusion (because rheumatoid arthritis affects more than just your joints!), the ableism I've faced from everyone in my life, and the degradation of my fine motor skills as the pain in my fingers and wrists especially gets worse and worse.

Also the ageism in it. . . "My grandparent has arthritis, that doesn't make them disabled." Idk how to tell you this bud but pretty much every elderly person in the world is disabled in some way because bodies break down and start doing weird shit naturally. Sorry that you see aging and disability as inherently contradictory but it's not my fault that you're so determined to gatekeep the label of "disabled" from people that you can't show even a bit of compassion to people whose experiences are different from yours.

Anyway @ fellow arthritic people I know this sucks so fucking bad and that no one takes us seriously but I promise you are not alone ily 🪻

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work is disabling; disability is class-enforcing. adjust ur ideological paradigms accordingly

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PSA for Across the Spiderverse:

Do NOT see the new Spiderverse movie if you have any form of epileptic condition or conditions affected by bright lights and rapidly changing colors.

I will not be spoiling the plot or anything happening in it, but it is important that people know, because ohhh my god the AMOUNT of flashing lights and rapidly changing colors from beginning to end was so rampant that even I, a non-epileptic autistic person, got a severe headache and wild overstimulation. They do not give a warning in theaters at all that this movie is NOT epileptic friendly from the literal beginning with the beginning credits - which is so, so sad!

This is a beautifully made film, it's wonderful, it's amazing, but unfortunately, it's not a good time for anyone super affected by bright flashing lights in rapid succession, especially those seizure prone.

I wanted to put this out there BECAUSE there are no theater warnings. Idk if anyone else has put it out there, but it is SUPER IMPORTANT!!!

I wish you all a lovely day and hope they eventually have a remaster that will be much more friendly to epileptic and other people affected by bright, flashing lights.

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Wait what's a buildings fire evacuation plan if you aren't supposed to use the elevator to get down

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A well informed autism self diagnosis is just as valid as a psychiatric diagnosis. Additionally, under the given circumstances it is safer, most probably less expensive and you don't need to wait for any appointment.

10 screenshots from a twitter thread by @devprice with white text on black background.

The thread reads as follows:

I hear from many trans & nonbinary people who are actively seeking an Autism diagnosis. My advice is RETHINK THIS. Restricting Autistic people's access to gender affirming care is a major TERF talking point. As legal attacks on trans healthcare mounts, a psychiatric dx is a risk

The high overlap between Autism & transness was one of the main "concerns" JK Rowling rose in her "TERF Wars" blog post. Numerous fearmongering anti-trans articles influenced by TERFs have raised the issue since. if youre trans now is not a good time to seek a formal Autism dx.

An Autism dx does not unlock access to any beneficial therapeutic treatment, bc there is no "treating" Autism. Formal diagnosis makes us vulnerable to legal & psychiatric control and gets our competence challenged -- you dont need to subject yourself to this. diagnose yourself

I am close with dozens and dozens of Autistic people, and I have no idea who has a diagnosis and who does not. It does not matter. There is no reason to ask, no reason for others to care how someone identifies and how they arrived there -- all that matters is community support.

also if you cannot afford to pursue a lengthy & expensive lawsuit, it's unlikely a formal diagnosis will actually protect you from discrimination at work, in school or in housing. if you have the means great, but most don't. disclosing disability can be more risk than its worth.

if you need a dx to access resources such as disability benefits or extra test time, by all means go for it, but be cognizant of the potential costs. you could be denied for surgery, lose control of your assets, be found legally incompetent, lose custody of your kids...

Tweet replies to this thread:

By Greysquirrel @/treerat93

My autism dx was forced on me at age 2 and kept me out of the military in my 20s. It’s been nothing but destructive. I was beat up in sped and believed myself to be stupid my entire life because of it. I can’t even buy life insurance.

By Emily Johnson @/emily_rj

In some states, people with autism face being denied organ transplants, are at higher risk for forced sterilization and/or denied contraceptive and reproductive care, and have a higher risk of police brutality I considered this and decided informal diagnosis was best for me

By AK Faulkner is sweet and...

In the UK, an autism diagnosis is already a significant barrier to gender-affirming care. The GICs automatically try to discount dysphoria as autism during your initial assessments with them. If you arrive pre-diagnosed with autism they write your dysphoria off as that.