I’m skeptical about the idea that people can appropriate disabled experiences in the same way they can culture
Like…if you experience something that is similar to my experiences, and that is similarly debilitating
I don’t care if you have the same Disability Label I do, we still have a bond there.
Especially for psychiatric stuff, where diagnosis is mostly just based on identifying a collection of symptoms? If you have one less symptom than you need to earn the label, it doesn’t make the symptoms you DO have any less real
“We are used to ignoring our own bodies. “These carrots are too spicy” we complained as a child, only to be told no, they were sweet, that the music wasn’t too loud, nobody can hear lights, what you are experiencing is invalid. We heard: you are invalid. You do not experience the world the same way as everyone else, and therefore, your experience is wrong. You learn to ignore the ever-present pain because nothing can be done about it, but then you have a kidney infection and others get mad at you for not noticing sooner. But why should you trust your body when it is always wrong?”—
Oh so true.
I was always told “that didn’t hurt” if I said “ow”.
So I stopped saying “ow”.
I lived with severe chronic pain, never getting below a 6, from the time I can remember existing. Like some of my first memories are that when I tried to connect to my body closely, I’d get blasted with pain, and I’d dissociate to get away from it. It was some kind of neuropathy or central pain, we don’t know which. I didn’t communicate about it until I was 15, at which point I was told it must be seizure activity because Neurontin made it better. Then several different meds later, I told that story to a doctor at the age of 22 or so when the pain had got so bad I was bedridden for a month (had to personally retrain myself to sit up for long periods), and she said that sounded like neuropathy and prescribed Neurontin on the spot, even though I’d been careful not to name Neurontin during my description, I just said “an epilepsy medication”.
So 22 years of searing, horrible pain that “didn’t exist”. Didn’t start writing about the pain until I was maybe 18 and found that lithium made it somewhat better. But I’m glad I got off lithium because that shit is dangerous. Anyway, when I got on Neurontin, I had to revise my entire pain scale. What I had called a “1” before was now a “6”. That’s how bad the pain was. And I had to revise my ability to detect overload, because it had always been associated with the pain becoming more severe, and with the pain treated, that was much more subtle if it happened at all.
Now I’m on Lyrica and Trileptal instead of Neurontin but they still treat it well. I tried to reduce my Trileptal recently and ended up in complete agony pain-wise.
Anyway, it makes me angry that an autistic child can grow up in this kind of pain, in this level of pain, with nobody noticing, and everyone saying “that didn’t hurt” all the time. With neuropathic pain, everything hurts — your clothes hurt, being brushed against hurts, the air on your skin hurts, all the things I was told “didn’t hurt”, hurt like hell, and go on hurting a long time after the initial touch is over. I remember having these “afterimages” on my body, like someone would brush past my arm and for an hour my arm would burn in that location. But “that didn’t hurt”.
And this is also behind several near-death situations where I didn’t communicate about pain for any number of reasons but one was who would even believe me. Or I did communicate about pain but lacked the correct body language so was written off until I hit the point of organ failure. Or things like that. And then they wonder at the fact that when they give me trigeminal nerve blocks, I’m the one patient who doesn’t squirm or grimace or cry out during the procedure.
And then there’s the whole “They don’t feel pain like we do” thing to contend with.
- Autistic Person: *Flaps when they're happy*
- Autistic Person: *Hisses and pulls away when they're upset*
- Autistic Person: *Points and jumps when they need something *
- Autistic Person: *Rocks and stomps when they're upset*
- Autistic Person: *Verbally stims when they're anxious *
- Autistic Person: *Pets other to show love and affection*
- Autistic Person: *Has a thousand unique stims and vocalizations for different contexts that convey different meanings*
- Allistic Person: "See, they don't communicate at all!"
I’m glad — and yes I really think most disabled people have multiple disabilities, just based on knowing a lot of disabled people, it’s very rare I’ve met someone with just one thing going on.
“That tone of voice.
— Dave Hingsburger, Rolling Around In My Head (via okc-misandry)
That specific tone of voice.
Is the tone of voice that people with physical disabilities refer to when they say, ‘they talk to me like I’m Ret@rded’. I get what they mean. I don’t like being spoken to that way either. I really don’t. It grates, it demeans, it insults. I kind of hate it.
But here’s the thing.
I don’t know a single person with an intellectual disability who likes being spoken to that way either.
So maybe we need to say “They speak to me like I’m lesser.”
Or, “They speak to me with a voice full of assumptions.”
Or, “They speak to me in a tone of voice that even puppies find offensive.”
Or, maybe best, “They speak to me in a manner that no one deserves.””
Queerability Statement About Jane Doe in Connecticut
Queerability, a leading LGBTQ and disability rights advocacy organization run by and for LGBTQ people with disabilities, expresses our profound concern about the Jane Doe case in Connecticut. Jane Doe is a transgender teenage girl with a psychiatric disability who has been moved from a psychiatric treatment facility to a juvenile detention center for boys in solitary confinement without trial due to violent behavior. The forced institutionalization of Jane Doe is incongruent with the Olmstead vs. L.C decision.
We urge the Department of Justice to take action and conduct an investigation. We also call on other LGBTQ and disability rights advocacy organizations to speak out on this critical issue.
I’m beyond exhausted with the attitude that the only reason I could possibly exist publicly as a mentally ill person is because I’m trying to get attention or something
Instead of maybe I just want to BE and not have to hide a huge aspect of my life out of terror
Everyone who makes judgments about who’s ‘real’ or not is inevitably forcing lots of mentally ill people to go stealth and I don’t think that’s unintentional. Their vitriol is directed at US, make no mistake. Not just ‘fakers,’ since people will decide we’re ‘fake’ for any old reason.
Totally agreed. And their logic about who is a faker makes no sense at all anyway. Like, “You’re a faker if you put it in your URL and don’t talk about it.” Why would a faker do that? A faker would be talking about it. Not that it fucking matters, because it’s better for there to be some fakers out there, than it is for there to be people calling people fake who aren’t. But seriously, the logic makes no sense.
I feel this way about other disabilities too, not just mental illness. Anything that can be hidden or disguised as something non-disability related (I have significant visual and motor control problems, just to name a couple things, but with various coping mechanisms I can generally pass as non-disabled in both those areas).
Especially because, with the number of “issues” I have, I’ve had many people assume that I’m making up some of them because “no one could have that many things wrong with them”.
And it’s tiring to face that, especially online where I can’t prove them wrong no matter what I do. So I end up censoring myself, often, to spare myself the stress of self-defense. The stress of passing and censorship isn’t much less…but it’s enough to give me a few more spoons to deal with unavoidable issues.
I agree with OP, I think there are plenty of abled people who are happy to hear less about all that, whether I’m faking or not.
Reblogging for your commentary.
I have heard “nobody can have that many things wrong with them” ever since I was hospitalized for a bowel and bladder blockage that coincided with liver enlargement and high liver readings and severe delirium and seizures. Even though all of those things frigging go together. So I was in the hospital in a life-threatening situation and my friend posted to my blog so that people knew what was happening, and asshats on the Internet were saying “Sie can’t have that many things wrong with hir, so sie’s a faker.”
Thing is… according to several of my doctors, it’s more common for people to have multiple disabilities or health problems than one single disability or health problem. People who have one thing wrong with them are the exception, not the rule. This is backed up by the roommates I’ve had in the hospital — like the woman who had Lesch-Nyhan syndrome and myasthenia gravis and dementia and some other stuff. And the one who had this whole collection of digestive issues including short bowel syndrome and a colostomy. And the list goes on. I rarely have hospital roommates with a single condition. (But the fewer conditions they have, and the fewer cognitive or mental illness they have or are assumed to have, the better they are treated, I have noticed.)
What my doctors have told me is that basically… there’s a lot of genetic conditions where one gene being tweaked the wrong way will cause problems throughout your entire body. And there’s also a lot of conditions where one condition will lead to another condition which will lead to another. Or where the treatment for one condition will lead to another — for instance many people on atypical neuroleptics for psychosis develop diabetes and an assortment of movement disorders, some temporary some permanent (tardive dyskinesia is only the most well-known permanent one, there’s also tardive dystonia, tardive akathisia, etc.).
Here’s the list of conditions on my health record right now:
Autistic disorder, GERD, asthma, status post cholecystectomy, PTSD, migraine, convulsions, neuropathic pain syndrome, hyperlipidemia, abnormal gait, trigeminal neuralgia syndrome, circadian rhythm sleep disorder, neck pain, anismus, thyroid nodule, incomplete bladder emptying, tendinitis, seronegative spondyloarthropathy, central sleep apnea, obstructive sleep apnea, intestinal obstruction, chronic neck pain, atypical facial pain, arthropathy of cervical facet joint, cervical spondylosis without myelopathy, asteatosis cutis, keratosis pilaris, gastrojejunostomy feeding, neuromuscular weakness, adrenal insufficiency, temporal mandibular joint disorder, bronchiectasis, eczema, past history of cold urticaria, environmental allergies, gastroparesis, anxiety, COPD, joint hypermobility syndrome.
And that vague neuromuscular diagnosis is probably soon going to be changed to myasthenia gravis or some other neuromuscular junction disorder.
And yes. Every single one of these things that can be tested for, has been tested for, and the test has come back positive. Even things like the myasthenia where we did every single normal test and it came back negative, we just did a single-fiber EMG and it came back abnormal, so now we’re looking into myasthenia again. And a lot of the above conditions are connected to each other. They’re not just random conditions that happen to all occur together, they’re things that go together because one overarching condition causes several of the others. So it looks like 43 conditions but it may be closer to 5 conditions. Especially since they’ve found that a really large number of autistic people actually have genetic conditions that affect the entire body but happen to go with autism — sort of like Down syndrome, which actually has a high correlation with autism — but this goes undiagnosed most of the time unless they’re looking for it. But when they take a random sample of autistic people and start looking for that kind of genetic condition, about half of autistic people have them. I think. (There was a study. But I am remembering from like… 2003, so my memory is fuzzy.)
I’ve gotten to the point where when a doctor pulls up my list of conditions they often say something like “So what’s the underlying genetic condition you have?” They just assume it’s there, even if we haven’t found it, because I have too many things going on. Plus too many of these things run in my family, for there not to be something genetic going on. My mother has a list of conditions to rival my own, and she’s been seen at the Mayo Clinic so we know they’re for real. In fact her doctors and my doctors have been communicating to figure out WTF is going on with the two of us. I just had her entire medical file sent to my neurologist, which is how he knew to do the single fiber EMG test that just turned up abnormal.
But my point is — it’s extremely normal for a person to have multiple disabilities. In fact, it’s more normal for a person to have multiple disabilities than a single disability. People like things simple, so on television and in the movies you see people with a single disability. But in real life you meet people who have bodies falling apart in every conceivable way. And I blame those media images for people who assume that people with multiple disabilities are either hypochondriacs or fakers. Because we’re the norm, not the exception, in the actual real world.
And the thing is… I’ve posted my medical records online, in the past, thinking it would convince people I was for real. It didn’t. They just used those to invade my privacy further. So I’m now pretty careful what I post online — I’ll post some test results and things like that, but still, more carefully than I did when I posted reams and reams of files showing my repeated autism diagnoses over the years (with detailed descriptions of my behavior). Don’t ever let anyone bully you into “proving yourself” in that manner. It’s not worth it and they are probably actually trying to bully you into giving them access to private information about you, that they can then use against you. So be careful.
I wish people understood really basic information about disability.
- Most people who say we are disabled, are disabled.
- Fakers cause much fewer problems, than people who go on witch hunts looking for fakers. (And yes, I’ve been burned by some fakers who were in it for more than just feeling disabled… it’s still not as bad as being falsely accused of being one.)
- Most disabled people have more than one disability.
- Many disabilities cluster, causing “one disability” to turn into fifteen different diagnoses very easily.
- Most disabled people have variable functioning day to day.
- Many disabled people only need their assistive technology part-time. It is not “cheating” when someone stands up from a wheelchair, or uses a white cane and then reads a book, or speaks sometimes and types other times. That is all pretty normal.
- Looking for fakers does not do “real” disabled people any favors. You are not helping us. You are probably hurting us. The search for fakers routinely results in the death of disabled people — just look at what’s happening in the UK. Not to mention an increase in hate crimes.
- You can’t tell by looking at someone whether they’re disabled or not. You can’t tell by scrutinizing them really hard. You can’t tell by the scuff marks on their shoes. Stop watching detective shows and thinking you know all about us. Stop thinking you know all about us. Stop scrutinizing us. Just stop.
And… uh… that’s it for now. Blech. From one multiply disabled person to another… I get it, boy do I get it.
I debated on whether or not to dignify this with a response but because I know your views are common I’ll speak not just to you but to all watching who has been thinking the same thing.
First things first, what is the extent of my disability and what does that mean when it comes to work and SS. I have a terminal, degenerative mutation which means my body gets weaker and sicker until it can’t maintain life anymore. At this point I have very little body movement, I can’t type (I’m using voice recognition software,) I can’t bath or feed myself. I can’t even drive my wheelchair some days and I only have so much energy some days to swallow or even speak.
That wasn’t always true. When I got out of high school I was well enough to work a desk job or something but there is no compromise with SS. There was no option to get a little less assistance while I worked and then more as I slowly died. They told me not to even try it because my SS would get pulled and getting it back would be a miracle so when I reached this point there would be nothing for me.
Worse, I obviously need a caretaker and that is my mom; the government gives me $600 a month to give her as payment but unlike an actual job she can’t work any other job or that $600 gets pulled. Not even a job in the house. That $600 is supposed to be for her food, housing, and all her bills. Impossible. That’s why we both live off the money I get. Why doesn’t she get a real job? Because I need a 24 hour caretaker. Why not hire a caretaker? Because they don’t work for $600. That would be inhumane.
You seem to think that I’m being facetious when I say the government doesn’t see me as a human; I am not.
When I was a baby I had to be reported to the government because I wasn’t a child, I was a ward of the state. My parents kept me and had no government assistance but because I was born disabled I was the state’s. I got my own file and where it asked for my identification they stamped RETARD.
I wasn’t allowed to enroll in public school, I was allowed to go to public school classes as a gift to me as long as I did what was required of me, that being social and medical experiments. I almost lost when I refused to be sterilized as I approach puberty. I got lucky because they got a defiant reaction from my family and things were changing in the 90s, they didn’t want it to go to the news. They didn’t want you people to know the government still systematically sterilizes “people.” My classmate’s families did not refuse the treatment.
This still goes on.
I think I gave you a good look at how I’m still not being treated like other adult citizen but let me put a fine point on it…
If I am raped it is considered a “crime against humanity” which is what having sex with an animal is seen as. The convictions are usually heavier on bestiality and if my rapist is a medical professional or care taker it doesn’t get reported.
If I am murdered by a stranger it isn’t a hate crime and, again, the conviction likens me unto an animal.
If I am murdered by a caretaker there is no crime. The court sees this as putting me out of my misery and empathizes with my murderer for having to deal with me on behalf of the state.
But as you said, I could be born in a third world country. So fuck me, right? God bless America.
It could be good and bad. I don’t think it would ever replace humans fully, but it could be good for some tasks more than others.
Reclaiming Ableism IMPORTANT NEW NOTE
IMPORTANT NOTE: People are telling me the #ableism tag gets trolled. So anyone who doesn’t want to get trolled, should maybe only post in #this is ableism. And people can choose whether to tag their posts #ableism or not. All other parts of this post remain the same.
I want to invite everyone who has had an experience with ableism, to post it to the #ableism tag. Not just now. But as an ongoing thing. Not just ourselves, but also when those we care about face ableism, as long as no privacy is being violated. This would be not just on the #ableism tag, but maybe also a #this is ableism tag as well. Both tags together, and any other tags we felt fit.
Why do I want this so badly? Because when I first went on the #ableism tag, easily 95% of the posts were people arguing about whether certain language was ableist. And then when nondisabled people would list their lists of oppressions, they’d talk all about the oppressions different oppressed people faced. And then at the end, they would mention ableism. And their description of ableism would be something like “Don’t say stupid, retarded, or crazy, because it’s ableist. Countering ableism is about avoiding ableist words.”
That’s why I was so angry. Not because people were focusing on words, but because it was all people were focusing on. Meanwhile I’d almost died because of ableism, and people weren’t talking about those kinds of situations much at all. Not on the #ableism tag anyway.
So here’s what I suggest we do, and I’d love if this really took off:
Any time that we remember, and can write about, and want to write about, an instance of ableism in our lives, whether big or small, past or present. Then we do so. And we tag it #ableism. And we also tag it #this is ableism. And whatever other tags we find relevant. And we see what happens. We see whether the tag grows to represent a much broader range of ableist experiences than it currently does.
Mind you, right now the tag is better than when I first saw it. But there’s still a lot of people who have only linked to it because they’re trying to get someone to quit saying ‘stupid’ in their ask box. Which may be legit for them, but when it’s half the posts on the #ableism tag, and half the rest are troll posts, there’s something wrong. And I’d love to see the tag be more representative of the ableism faced by disabled people in everyday life, around the world, every single day.
By the way, if it matters, I’m physically disabled, cognitively disabled, developmentally disabled, learning disabled, congenitally disabled, acquired disabled, stably disabled, progressively disabled, chronically ill, and psychiatrically disabled. And I’ve had experience in most communities associated with those things, most notably the DD community since that’s where my services come from. All my family and friends are disabled almost without exception, and I see ableism constantly as a result in my life and theirs. And while ableist words are part of that ableism, they’re only one part, and not the biggest or the worst, in our lives anyway.
So, go ahead, post your memories and current experiences, about yourself, about other disabled people (if ethical to do so), about current things, about past things, even fears for the future, if it’s about ableism, then #ableism and #this is ableism are the tags for it. If your experience does have to do with words, that’s fine, too — ableism does happen with language, after all. And we’ll see what happens. Any takers?
institutions can and do hurt people just by existing
I was never in one.
but a lot of adults in my life made damn sure I knew they existed
and that there were ~worse places~ I could be
Yep I’ve always told people that institutions did serious damage to my life long before I’d ever been in one. People don’t always understand.
Oh man, I was never in an institution, but the reason I didn’t fight back against the meds and all the psych people and so forth was because the institution was where I would be if I couldn’t straighten up and fly right.
So yes they effected me.
And my whole childhood was lived in a certain shadow. Because I would find descriptions of people who thought and acted like me… and then they would be followed in a few sentences by “this person was placed in _____ institution”.
And the thing was… the drugs and the way the psychiatrists and my parents treated me ended up acting surprisingly like a watered-down version of… an institution.
The descriptions… that was me, too. Also seeing people who moved like I moved, and then seeing that they were being led around town, in a line, by institution staff. And yes, the watered-down institution thing happened, I think because my parents didn’t know what else to do, from what they say. So they emulated what they’d seen, and it turned out badly for all of us.
I feel like psychiatry was a bomb that hit our family, and the destruction was intense, and our family was never the same, and we never talk about it, never fully acknowledge it, but it’s always there. And I always feel like I was at the epicenter, because it was my ‘breakdown’ that the bomb swirled around. But the damage was done to the whole family.
Rights of Parents with Disabilities
Make your voices heard at the National Council on Disability’s “Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children” Congressional Forum. The event is open to the public and written testimony will accepted for two weeks after the event. Why is this important?
Robyn Powell, Attorney Advisor at the National Council on Disability, writes in “Can Parents Lose Custody Simply Because They Are Disabled?” that "removal rates where parents have a psychiatric disability have been found to be as high as 70 percent to 80 percent; where the parent has an intellectual disability, 40 percent to 80 percent." In addition, she writes, “parents who are deaf or blind report extremely high rates of child removal and loss of parental rights.”
This Huffington Post article covers only a small fraction of how the rights of parents with disabilities are substantially less in the eyes of society and law - simply because of disability. Disability, ipso facto, does not make one unfit to parent. Too many factors go into parenting, and it says significant things about how society views disability when it is the reason for a child being taken from their parent(s).
It is a carryover from when eugenics was at its height, in the 1920s and 1930s. Eugenics posited that people with disabilities and mental illnesses, and often those deemed outcasts or misfits by society, would produce burdensome offspring. The number of women sterilized, or rendered incapable of producing children through surgical means, outnumbered the amount of men vastly and even now women with disabilities are not seen as fit mothers. A famous example is Carrie Buck. She was the plaintiff in Buck v. Bell, an orchestrated test case culminating in the 1927 Supreme Court ruling that a Virginia statute concerning the sterilization of individuals in institutions and prisons was constitutional. What does it say that the entirety of Buck v. Bell has never been overturned, even today?
We are no longer in the 1920s and 1930s, and the ingrained ableism still persists into the modern day. The statistics listed by Powell, and the countless cases in which children are removed from parents with disabilities, says among other things that:
The disabled are not fit to bear children, nor raise them.
People with disabilities should not have the same rights as non-disabled parents, because they are inherently less.
Children need to be protected and raised away from people with disabilities.
Some people may protest, once the concept of eugenics is explained to them, that they’re not like that. They don’t support things like that. Yet by either failing to act in defense of, or supporting the removal of children from parents with disabilities, they are playing into the very legacy of eugenics.
I have some exciting activism news: I’ve just joined the International Socialist Organization, and I’ve been working with them on disability politics. And they’ve agreed to help me out in March and April to speak out against Autism Speaks and their ableism! I’m going to give a public teaching talk and try to record it for the internet.
However, I also have a lot of self-education to do on the topic. Can anyone recommend any books about the history of disability politics, especially in socialist/communist contexts? I’ve read that even in countries where socialist revolutions were relatively successful, the disabled were forced to live in conditions just as bad as, if not worse than, those in capitalist nations, and I really want to know more about that. ADAPT’s history of sit-ins especially interests me. I want to talk about all disability, too, not just autism (which I just happen to know the most about, being autistic).
I think you’ll find that they mostly care about self-promotion and selling their newspapers, as well as rivalries with other socialist organizations (which are little better, sometimes worse). Around here, they tend to turn up at anything remotely political, prominently waving around copies of the Socialist Worker (aimed directly at the camera), while reciting as much memorized babble as they can about the issue in order to keep the camera’s attention. Which has not changed even slightly since my brief involvement with them half a lifetime ago when I thought they might actually be usefully socialist. When I quit, they told me “That’s okay, you never sold enough newspapers anyway.” But good luck, maybe your chapter is different.
In these discussion posts, we ask our contributors for their thoughts on various topics. We’ll post one every Friday this month. Today, we asked:
What kinds of words, phrases, or situations used in book or character descriptions send up warning flags for you? We’re thinking of clichés, ableist language–anything related to disability that may be a turn-off.
Snippets of their responses:
Natalie Monroe: What I hate is when books try to ‘beautify’ disabilities …
Corinne Duyvis: I tend to get turned off “autism books” when the flap copy references the character’s “unique worldview” or starts out listing all the character’s peculiarities …
s.e. smith: … if I’m casually looking at jacket copy, things I tend to look out for are ‘despite her disability’ or ‘overcoming adversity’ or ‘brilliant but [disabled]’ or something along those lines, where characters are separated out from their disabilities …
Kody Keplinger: … any time a [blind] character is introduced in a way that shows us how advanced their other senses are …