allisticntprivilege - Tumblr blog

[allisticntprivilege]

I want to talk about a phenomenon that all-too-commonly happens to folks with chronic illness, disabilities, mental illnesses, or basically any condition that needs any kind of help to stay alive or suffer less. whether that is medical care, the process of getting access to medical care, accommodations, or anything else.

I am not sure if this has a name, but it is widely known, it happens all the time, and understanding it is in my eyes essential to disability rights.

it is not exclusively a disability rights issue, and chances are this will help you understand other people, or even might help you understand your own self. this is a difficult topic, and I cannot write about every possibility where or how this happens. but I will do my best here.

so here we go.

so say, you are suffering.

you are suffering in a way that can hopefully be alleviated with the help of others. your body does not like to suffer. your body tends to think, "I need to suffer less." and you figure that getting help means you can suffer less. so your goal becomes: "get help so I can suffer less."

go to the person(s) who can help, get that help, and then you can suffer less! like a doctor. sounds easy, right?

but somewhere along the way of getting that help, someone whose cooperation you need does not believe you are suffering in the way that you say you are. maybe they think you are lying about your suffering, maybe they think you are suffering from something else entirely, maybe they think the type of suffering you describe does not exist at all, or maybe they think you are not suffering enough to deserve that help.

the people saying this can be friends, family, bosses, teachers, insurance, benefits offices, anyone whose cooperation you need to suffer way less at any point in time. even doctors.

and they say they do not believe you for one thing or another, said in one way or another, to the point that they refuse to help.

you are suffering. and you need that person's help at that time, and they get in the way of you getting the help that you need, because they say they do not believe you. and your brain is screaming at you that you need to suffer less. your brain, wanting to suffer less, may switch priority from "I need help so I can suffer less" to "I need people to believe me so I can get help."

you might be in the worst pain of your life, you might have been suffering for weeks or months or years, and you might finally have a ray of hope of getting medical care, and you might go to a doctor and get called a liar to your face. this can happen for literally any medical condition, even life-threatening ones. or maybe you never even got to a doctor because you could not convince your family to take you, or your boss to give you time off, or your instructors to excuse the absence you needed to get to that medical care.

every additional event where someone not believing your suffering results in unnecessary suffering, your brain starts to prioritize getting people to believe that you are suffering in the way that you say, because that might be the biggest barrier to care throughout your life. all while you might begin to question your own perception of reality, because of how disorienting it can be to suffer so severely and have people tell you that the problem is not happening to you, and your reality is fake, and you do not need the help you say you do, and you are the problem. you know. gaslighting. it sucks!

"I need help so I can suffer less." becomes "I need other people to believe me so I can get help." becomes "I need other people to believe me." and you might even struggle to believe yourself, because of how many people did not believe you, and how distressing it is to have your reality questioned by people who refuse to help you.

you may not realize you have been traumatized. you may find yourself getting angrier, or more upset, or more defensive. you may misread situations where people are just trying to understand you better. because when people have not believed you in the past, you suffered to an unnecessary degree, potentially even to a point that you almost died. and when you suffer like that, where there is significant harm, "I need other people to believe me" is your brain trying to help you avoid that suffering again. "I need other people to believe me" can be the trauma from not getting the help that was needed.

I have seen this professionally surveyed in some patient populations, how many patients had been called liars or told it was "all in their head" before or after they got diagnosed. and the results are heartbreaking, because often times most patients surveyed had experienced what is being described in this post, especially by doctors. (big POTS survey by vanderbilt is a big one, has had a lot of presentations on that study. POTS is a nervous system disorder usually diagnosed with a single test called a tilt table test)

the trauma of being forced to suffer because someone did not believe you can influence how you perceive and interact with the world.

and when someone with power over you claims that they will believe you if you were just suffering more,

"I need help to suffer less" turns into "I need people to believe me so I can get help" can sometimes unfortunately turn into "I need to suffer more or prove my suffering more before people can believe me and I can get that help and eventually suffer less."

pro tip: there is no level of suffering, even when your life is threatened, that guarantees that everyone will believe you and help you. none. do not suffer more trying to convince someone else, because they still might not believe you, and then you just hurt yourself for no reason, to a degree you might not be able to fully recover from. instead, plan for what to do if that person never believes you.

it is warped. and it sucks. but it happens all the time. if someone goes out of their way to try to get you to believe them, even if it sets off a million alarm bells in your head, please understand: people who have suffered in the past because of not being believed can start to get defensive about not getting believed, because the goal of the body is to keep you alive while suffering as little as possible. and when not being believed is the difference between suffering more and suffering less, shit gets bad.

and not only that, people can lose relationships with their loved ones from not being believed.

it really fucks with people.

if everyone had believed me throughout my life while I was seeking accommodations and medical care, I might not be terminally ill right now. this is a big part of why I insist that people go to doctors recommended by patients, so they can get medical care quicker without getting called a liar to their face. I want as many as people as possible to have it better than me, and get care and compassion more quickly than I did. some doctors are just more likely to default to "the patient is lying" rather than "I do not understand the patient's symptoms". this is especially common with minority groups, whether or not said doctor acknowledges their own biases and discrimination.

this has caused me more distress in my life than the actual physical pain I have been in. I have had doctors, both in physical healthcare and mental healthcare, call me a liar to my face when I was at my most vulnerable and desperately needed medical care. I have had my body shutting down, I have been in so much pain, and I have begged for help in tears while being called a liar, even by my own medical team, even by my own family. nobody was ever able to undo what they did to me or the damage it did to my body. and very few even tried, not even with an apology. because everyone was just that certain I was lying.

(and no, I do not have the support or resources to sue. very few people do, especially if they actively need complex medical care. being disliked by doctors is BAD is the point here)

I have nightmares about it. I instinctively try to prove my medical conditions, because of how many times I have wound up screaming in pain or hospitalized or almost dead from being doubted. these days proving most of anything is easy, because I have a medical implant I can just show people. and if I showed it to you, this is why: I value you. but the ghosts of doubt still haunt me, even though my doctors say that my life is at risk and I am on some of the most powerful medicine in the entire world. being gaslit about your own body is traumatic.

I am not alone in this. there are countless others. and not everyone has realized what is happening to them. you may not have realized it yet either.

please understand. and be kind. and help if someone asks you for help, even if you do not believe them.

I do not know how many people are faking medical conditions, but I do know that nearly every chronically ill person I have ever met has been accused of faking and/or lying. this is one of the most common topics in the world for support groups and even certain actual medical conferences. "how do I get the people in my life to believe me?" and "how do I get doctors to believe me?" and "how can we as doctors stop doubting these patients, when we keep getting it wrong?"

whoever is reading this: at some point in your life, you may be 100% sure someone is completely lying, and can still be wrong. your words may stick with them forever and the help you refuse them might cause harm them in ways that cannot be undone. do not gamble with someone else's life based on your own limited understanding. do not become a villain in someone else's life. even if they are being rude. be understanding when someone is defensive. they may have barely survived.

if this is happening to you: do not lose sight of your goal. remember that you want to suffer less. do not beat yourself up for being so worried about being believed. write your experiences down so you can have more conviction in them. your body is trying to protect you. go to doctors recommended by patients if you can, even if every doctor until now has called you a liar. even if your brain insists that no doctor will ever believe you. consider seeking support specifically from places that specialize in helping people with chronic illnesses, or whatever your circumstances are. this is a really common thing people wind up needing help with, and not getting the right resources can perpetuate it. but it can get easier. make sure you are understanding about other people going through the same thing, too.

and no matter what happens or why:

this all gets easier with understanding and kindness. I have been able to heal so much over the years just by having more kindness and understanding aimed my way.

thank you for reading. take care.

[allisticntprivilege]

i feel ike your post ignored how some people literally rely on guardianship though? like there are ID people and brain injured people who literally cannot speak and taking away guardianship takes away a legally enforceable way to protect them. most states don’t recognize supportive decision making or whatever it’s called and it’s not legally binding.

yeah, and it needs to be legally binding. legal guardianship is abusive because it removes the autonomy of disabled people to override support persons and say "no." legal structures need to resemble supportive decision making, because disabled people rely on support persons being able to make decisions on our behalfs and navigate the legal system on our behalfs, and the only legally enforceable structure for that in the usa currently is inherently abusive.

[allisticntprivilege]

psychiatrists do not provide access to medications. they selectively restrict access to medications. regardless of your personal relationship with your individual psychiatrist, the broader power structures in place are that psychiatrists are a barrier you must cross (again + again + again) to receive psychiatric medications. some people are shoved across this barrier against their will; some people are forbidden to ever cross it. but if you begin to understand this as a system of restricting access rather than providing access, you will understand that abolishing psychiatry would not destroy your access to medication, but instead make it easier.

before accusing me of trying to "take away your access to meds" through my activism or opinions, ask yourself this: who in your life, right now, has the power to restrict your access to psychiatric medication? why? what expectations do you have to meet in order to continue to access these medications? who enforces them? can you think of anything you might do or say that would cause you to lose access to these medications? have you ever had to pretend to be feeling or doing something differently in order to retain access to medications? have you ever had your medications arbitrarily changed against your will due to insurance, financial, or behavioral issues? have you ever had to 'prove' yourself in order to obtain specific medications (perhaps stimulants or opioids?)? has a provider ever threatened to take away your prescriptions in response to something you said or did? have you been told or do you believe that you need your access restricted because you "can't be trusted" or "lack insight"?

if want to find the people trying to limit your access to medication, i suggest starting with the provider name on your pill bottles.

[allisticntprivilege]

We're autistic, we're human, get used to it

Some dehumanizing descriptions of autism are negative. For example, some people believe that we are incapable of love, or incapable of imagination, or incapable of understanding anything of importance.

Some dehumanizing descriptions of autism are positive. For instance, some people believe that we are incapable of lying, incapable of being manipulative, and that we always say exactly what we mean.

Autism doesn’t work that way. We are fully human, for better and for worse. We are fallible. We make communication mistakes. We don’t always know what we mean, and we don’t always express ourselves clearly. For instance, sometimes we say things that feel direct but that are actually very confusing. That’s human.

We are capable of treating others well, and we are capable of treating others badly. We are capable of caring about others, and we are capable of indifference. We are capable of being kind, and we are capable of being cruel.

Autism means having disabilities that can affect how we communicate, how we move, and how we understand things. Autism doesn’t make us better than other people, and it doesn’t make us worse. We’re not subhuman, and we’re not superhuman. We’re just people.

[allisticntprivilege]

There’s nothing inherently “scary” about someone talking to themself in public.

There’s nothing “scary” about someone rocking back and forth in public.

There’s nothing “scary” about someone pacing back and forth in public.

Some of y’all are just ableist.

[allisticntprivilege]

any 'social contagion' logic presupposes (white, cis, tme, straight, abled, sane) ppl - especially those under 18, are 'pure' by default and thus in imminent danger of corruption, even possession, by unnamed forces of evil. (and, conversely, that those who cannot meet those criteria are vectors of sin –– i mean, symptoms. we can see this in very obvious ways re: discourses of trans contagion, sex ed as grooming, and the like, but it's definitely also worth considering the overlaps w/ Madness & neurodivergence:

before existing anti-trans moms had the main stage, discourses of "feminine contagion" were already being whipped up by many of these same moms, worried that their daughters' [sic] bodily autonomy was the 'evil' at the root of their disordered/disorderly eating, their self-injury, their suicide. fear of anorexia-as-contagion (and self-harm/injury more broadly) is rooted in this fear of bodily autonomy as a force of corruption, and as such, demands to "recover" in normative ways demands a kind of exorcism. it presumes that the Bad Part of us is unnatural and removable, because the person we are Ought To Be occupies the role prescribed to us already. cissexism, ableism, saneism, entangled once more.

one other interesting example of this - and by interesting i mean evil - is 00's A$ rhetoric around the "I Am Autism" video/campaign. Again, autism is a thing that comes in and "possesses" the hitherto "pure" child and must be cured - eradicated - battled. it's no coincidence that the most violent anti-trans bigots rest on the relationships between gender noncompliance and noncompliance with alimentary/behavioral norms, not because there is some magic genetic link between them, but because they are all expressions of willful & "impurifying" autonomy.

[allisticntprivilege]

there's a lot of talk recently about separating temporarily nonverbal people from the word nonverbal, having it mean only permanently nonverbal people like me, and there are many reasons why someone might want this and many of them are fair and valid.

however there is one reasoning I've seen a fair bit about and that is that "people who aren't permanently nonverbal using the word is taking over high support needs spaces" which i think is. understandable emotionally but the wrong fight.

firstly it's conflating nonverbal with high support needs, while it is a common co occurrence they are different things.

secondly the issue is us permanently nonverbal people getting spoken over (the word play does not escape me). making others not use nonverbal isn't going to change that, because they don't care if we have a separate word or not, they just think they are boosting our voices but aren't. and that's the issue.

[allisticntprivilege]

I think something people don't understand or often misrepresent about psych wards in the US is that even if you sign yourself in voluntarily, you're often doing so because the alternative is being committed. They tell you you'll be able to leave whenever you want if you go in "voluntarily," but this is very often not true if, once you're admitted, they decide it's "too dangerous" or you're too unstable to let you leave. And then, you're essentially committed anyway. I see posts by people that make it seem like involuntary and voluntary stays are a sort of...binary thing at US hospitals/facilities and it's just not true. Or that voluntary stays are somehow safer or offer people more autonomy. If you go in, they have the final say about when you leave whether you're "voluntary" or not. They can ship you to a state hospital long-term against your will from a "voluntary" stay in a psych ward. I know firsthand. Just...look out for yourselves and your loved ones, folks.

[allisticntprivilege]

Please stop using disabilities you don't have as comparisons.

I saw a video trying to explain that autistic people don't make eye contact because it can be painful for them (good, this is true) and telling them to "just do it anyway" is ridiculous, saying "you wouldn't tell a wheelchair user to "just walk, its better for you" so don't tell autistic people to just make eye contact".

But people do. They do all the time. It's well documented that doctors will withhold their ok for patients to get a wheelchair (which is needed unless you're paying out of pocket, because insurance and most public disability services like the NDIS need proof from a doctor). I've known people who can hardly walk and are having to fight because the doctor still insists it better for them to walk, even if it's painful and sevearly limiting their quality of life.

Then in the comments, someone pointed out that people do say that to wheelchair users (good, this is true) but then continued on by saying "unless you just don't have legs" which is just as bad as the origonal.

I had to fight to get my first wheelchair as a double leg amputee, and every wheelchair since then I've had to justify not wanting the "better option" (prosthetics) to the government so they'll approve me for the funding. Doctors and even strangers too, all want to know why I'm not walking, why I'm not using prosthetics all the time. When I go on trips with my family I'm told to "just walk" so they don't have to pack my wheelchair. at my own graduation from university I was chastised by the organisers for not bringing my prosthetics (because wearing them was exceptionally painful back then and i hadnt worn them in nearly 3 months. I had asked before if this would be ok. they knew) because the venue was accessible but not the part of the venue the graduates were in. On the topic of university they also put my class in the only non-wheelchair accessible room and held meetings i was expected to take part in, in the non-accessible lunch room. When I complained, I was told to just use my legs for a few minutes so I could get into my classes. Being an amputee with no legs didn't shield me from these experiences either, it often made it worse.

I have all 3 of the disabilities mentioned (autistic, wheelchair user, amputee). If you don't have the disability you're using for a comparison, don't use it. Please

[allisticntprivilege]

I think the reason a lot of leftists struggle with disability justice is that they haven't moved past the concept that discrimination isn't bad because it's objectively "wrong." yes, sexists are objectively wrong when they try to claim women are dumber than men. yes, antisemites are objectively wrong that jewish people are inherently greedy and run the state. yes, racists are wrong when they try to claim that white people are the superior race. and so on.

but then with disabled people, there are a lot of objective truths to the discrimination we face. people with IDs/LDs do fall behind and struggle with certain concepts. physically disabled people are often weaker and less capable of performing demanding tasks than able bodied people. many of us with mental illnesses are more reckless and less responsible. a lot of us are dependent on others and do not contribute much "worth".

and guess what? disabled people still deserve a place in the world. disabled people still deserve the supports they need. because they are people, and that should be enough to support them and believe they deserve a place at the table.

if your only rebuttal against discrimination is its objective inaccuracies, you are meeting bigots where they are at. you are validating the very concept that if and when people are truly incapable of being equal to the majority, that means they are worth less. this causes some leftists to then try to deny the objective realities of disabled people and/or become ableist themselves.

your rallying behind marginalized groups should start and end with the fact that people are completely worthy of life and equity, because they are fellow human beings and that should, frankly, be enough.

[allisticntprivilege]

if you have any experience, how do you feel about job boards “made for” ND folks, like mentra? I joined one hoping i could find a job that wouldn’t make me want to jump off the Sears tower but it’s giving the Gary I Need A Masters Degree spongebob meme. I hate it here

neurodiversity employment programs are predicated on the belief that we are easier to exploit than other workers because we are more desperate, and the stereotype that we are skilled in science, engineering, technology, and math. if you need work and have the credentials do you, but i wouldn't place ANY faith in these organizations treating you better than any others. and by finding work through them, you take away your choice of whether to disclose disability at work or not

[allisticntprivilege]

Wonka meme: The text "Autistic adults asking for help and support for society." over a captioned Screen grab from the part of the original Wonka movie where Wonka says "You get nothing, you lose! Good day sir!"

[allisticntprivilege]

AAC culture is knowing how much your device helps you but gaslighting yourself into thinking you're making up the benefits.

im sorry 😔

[allisticntprivilege]

AAC culture is being shocked whenever people react normally (read: as if you just used verbal speech) when you use your device with them

^^^^^^

Thisssss

[allisticntprivilege]

Shoutout to people who are noticeably autistic!

As someone who is visibly autistic, I get treated weird by a lot of people. I assume other autistic people have the same problem. It’s not fun!

Just because we are weird or different, does not mean we don’t deserve respect!

You don’t have to baby talk us or treat us like children. You don’t have to point and stare. You don’t have to call us names or slurs.

[allisticntprivilege]

The thing about the r slur is that people who are using it again are indeed using it as a slur. This isn't a word that is being reclaimed. This is a word that is once again being used 100% as a slur. You're being a bigot if you're using it against others. Straight up. There isn't another argument to be made. Knock it tf off.