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4:06am
May 4, 2015
“It’s important for a woman with Down syndrome to be able to look in the mirror, actually see herself reflected back, and like what she sees. This is the birth of power.”
—Dave Hingsburger, Cutting The Strings
I don’t have Down syndrome, but I’m unusual-looking enough, partly related to disability, that this statement means a lot to me. I once got anon hate saying that I knew I was just ugly, and that I must be trying really hard to love how I look every time I look in the mirror, but everyone knew I was lying, etc. Followed by the usual crap about how fat people are ugly.
People don’t understand what it’s like to have visible elements of your disability, or disfigurement, that have been seen as ugly and bad for so long that you absorb it into yourself. It’s different than the usual body image issues a lot of people have for other reasons. Not to belittle those issues. But it’s different.
Here’s a very close paraphrase of something someone said about me once. I’d made an anonymous website to mock an ASA website that was belittling autistic people, and my pictures were all over it. This person said, “I used to work in institutions with people who looked exactly like her. And there’s no way she wrote that. Someone’s exploiting her.”
I’ve gotten that kind of reaction a lot. Because I somehow “look severely intellectually disabled” to a lot of people.
And still I can look in the mirror most days and see myself as beautiful. Also as ugly, but not in a bad way, and not in a way that contradicts being beautiful. And I can look at people who really do have severe intellectual disabilities and see them as beautiful, too. It takes no effort because they are beautiful. If you look at the light shining through everyone on this planet, you can see beauty reflected through it. But sometimes the person it’s hardest to see this in, is yourself.
75 notes
12:33am
April 30, 2015
You can tell a lot about a DD agency by how they treat their disabled employees.
There are only a few developmental disability agencies in the area. In California, there’s tons of agencies. Here, I only know of the in my local area. I only have experience with two. Both of them employ some people with developmental disabilities. But they couldn’t possibly do it more differently.
Walking into one office, I saw a man with a developmental disability delivering the mail. He had a staff person with him directing him where to go. He clearly — very clearly, from the standpoint of someone with similar problems — had a movement disorder that made it hard for him to stop going in a direction once he’d started. So he bumped into things and people a lot. He bumped into me.
His staff person immediately started shouting at him and demanding that he apologize to me and pay more attention to where he was going and on and on and on. He just stood there looking more and more upset. I knew, and he knew, that there was nothing he could’ve done different. And that was only one of many such incidents I saw there. Disabled employees were not considered the same as nondisabled employees at all.
Then I went into this other DD agency. It was an agency that helped DD people with two things: Self-directing our own care (something I was looking into), and finding gainful employment. So maybe it made sense that they’d be different. Or maybe not. I don’t know.
All I know is that every time I walked into the place, I saw a woman with a developmental disability answering the phones, typing at the computer, and doing all the work a secretary normally does, without any indication that she was any different from the nondisabled secretaries.
That told me that this agency was serious about their mission to find employment for disabled people. And also that they truly respected us. They never talked down to me. If I came in unexpectedly, they would drop everything and come talk to me about what I needed.
I didn’t end up going self-managed with my care, although I still might do that someday. But I have to say that I was incredibly impressed by the difference in the two agencies. This isn’t the first time that I’ve seen such a difference between agencies, reflected in how they treat disabled employees. And this all happened years and years ago.
But I thought people should know that this is something you should look for, if you’re scoping out agencies to give you disability services: If there are disabled employees, how are they treated? Do they seem like just another employee, or are they treated like “clients” who just happen to be doing work (worse still if it’s “make-work”) in the office? Do they get publicly humiliated if they make mistakes, including mistakes that they clearly can’t help making? If they have a job coach or another staff person assisting them, does that person seem to be basically running their life, or are they providing assistance in a respectful way so that the person can do their job? Is there constant tension in the air between the DD person and their job coach? Does the job coach get on their case for things that aren’t even problems (like rocking, quietly humming, etc.) while nondisabled people get to be much louder, much more disruptive, and nobody treats them badly for it?
It’s things like that that can tell you a lot about an agency without them even knowing what they’re showing you.
1:12am
January 8, 2015
Shout out to all the developmentally disabled people, and people with dementia, and other cognitively disabled people…
…who go outside with a purpose in mind, only to be described as “wandering”. Meaning that they had no purpose, their feet just carry them places. Which definitely happens.
But if you’re living in a shitty nursing home, and you figure out how to leave it, then it’s pure imaginary bullshit on the parts of the staff, to believe that you had no reason to want to leave.
9:04pm
December 1, 2014
The White Institution (written ~2002, events 1999)
I walked down the street
With my eyes on the building of white
I knew they were like me
Autistic and trained not to fight
They rocked behind bars and
I knew I belonged there not here
Not out on the streets
With the ones who had never known fear
My body moved forward
To ocean with sand and with stars
But my thoughts, they went back
To the white institution with bars
As slugs we might be
But the world it had fashioned a shell
Not home anymore
Not here, not on earth, but in hell
madeofpatterns this is my best attempt to recreate from memory the poem I wrote about that white institution with the tiny yards full of wrought-iron bars, and the beautiful gardens that nobody ever actually walked in, that I saw anyway. I can’t find my last post referencing this place or I’d link it. If I ever find the original version (probably in my computer that’s in the shop) I’ll post it if it differs significantly from this version.
12:45am
October 18, 2014
"Retarded" seems to mean something different to autistic people.
I keep reading things by autistic people, or by the parents of autistic people, where the autistic person suddenly demonstrates a new skill – usually typing, sometimes speech.
And they demonstrate that they understand a concept like “A galaxy is a group of stars.” (Yes, I’ve been gritting my teeth and reading Portial iverson.)
And when Portia saw her son type that, her immediate reaction was to be thrilled that “My son isn’t retarded after all.”
Except… I don’t know how many people with intellectual disabilities Portia Iverson has actually met. Because most of them know that a galaxy is a group of stars. Seriously.
It seems like to a lot of autistic people and their families, especially those who have grown up being considered empty shells, “retarded” is a word for “empty shell”. Which is horribly unfair to nonautistic people who can’t escape their ID label just by typing something that most people know. Or to autistic people who won’t ever be able to type. Or for autistic people who continue to score low (just not as low) after learning to type.
Anyway, this usage of ‘retarded’ and 'not retarded’ offends me, a lot, because I know a lot of people with intellectual disabilities who can do all the things that these autistic people claim mean they are “not retarded’ if they can do them. (And, in fact, I know people with intellectual disabilities who deliberately show off their largest vocabulary words because they know the contrast between what people expect, and hearing a word like 'cunnilingus’ come out of their mouth (true story!), is going to make nondisabled people seriously uncomfortable. In that case the guy was trying to make the point that in this sexuality class for DD people that I was in, we didn’t need to be baby-talked through it. We not only knew what sex was, we knew plenty of vocabulary words about it. It did have the intended effect, although the instructor’s first reaction was to blush and then say "That’s a BIG WORD” in a sing-song voice…)
Anyway I’m just expecting that if an autistic person had typed that word, for any reason, they’d be saying “There’s no way she has an intellectual disabilitty, that’s no ordinary word she used there.” (And then there might be a scandal about whether she was really the one typing, even if FC was not involved.) But I can assure you the guy who used it had an intellectual disability. Having an intellectual disability doesn’t mean being unable to communicate, unable to think, unable to use long words, or unable to smart off to condescending sex ed teachers.
I do understand the desire to cast off an inaccurate label. But these people don’t seem to be in this just for the inaccuracy. They’re doing this because the word “retarded” has come to mean something so irrevocably bad that nobody with it could ever quite be human. So to prove their humanity, they “prove they’re not retarded”, by doing things that… people with ID are absolutely capable of doing. Yeah, THAT makes sense.
5:17am
October 1, 2014
Exposure Anxiety
This is something I didn’t realize how much I had and I really need to reread Donna Williams’s book on it. Last time I was too defensive to read it properly, especially when she recommended Risperdal as treatment, which made me too furious to continue. Not that autistic people shouldn’t take Risperdal if they want to, but she’d been told it was a mild anticonvulsant (it’s not, it lowers the seizure threshold) and Risperdal has the potential for severe short-term and long-term side-effects including a severe worsening of autistic catatonia for anyone who might be experiencing catatonia. And remember, lots of autistic people have catatonia without having autistic catatonia. Catatonia is a set of motor traits that are exceedingly common in autism. Autistic catatonia is a progressive amplification of those traits starting in puberty or young adulthood.
Anyway Donna Williams wrote a rough sketch of what the diagnostic criteria for Exposure Anxiety might look like, and I thought it might be useful for autistic people since many of us are prone to it. This is a long post so it has a tl;dr at the end and a cut after the criteria.
If there were a diagnostic criteria for Exposure Anxiety it might fit the following:
A. Present from birth or infancy and persists throughout the person’s life span.
B. A marked and persistent aversion to directly confrontational attempts by even familiar others to share joint activities, communicate directly or cause self awareness, escalating from aversion to diversion, to retaliation responses. (Note: this could also be present in abused children, those with attachment disorders, and those with information processing disorders, sensory perceptual disorders, sensory hypersensitivities or sensory deficits).
C. Involuntary avoidance, diversion and retaliation responses revolving around basic self help skills and toileting even in the absence of any social audience. May later be accompanied by a tendency to mirror others when they are doing these things (can’t do as oneself) or to attribute responsibility to others or to objects to achieve these things (can’t do for oneself).
D. A social style ranging from self isolation to seemingly aimless wandering to highly active, even sometimes seemingly socially threatening approach-avoidance behaviours.
E. A communication style which may include any range of the following:
Selective Mutism, mindless (even self-hypnotic) singing or self chatter.
Short, telegraphic bursts of speech.
Whispered, self directed, rushed or overly slowed speech to the point of being incomprehensible.
Highly characterised stored utterances or scripts.
Persistently impulsive communications which are offensive or distancing.
Obsessive anxiety-driven descriptive or intellectual litanies. Artistic or typed expression far beyond what the person can express directly or verbally.
Note: Provided these are not better accounted for by Tourette’s tics, Semantic Pragmatic Language Disorder, Aphasias, verbal agnosias, Social-Emotional Agnosia, personality or conduct disorders, Alexithymia or other mood or anxiety disorders.
F. Exposure to uninvited praise and attention provokes immediate avoidance, diversion or retaliation responses. By mid-late childhood these EA responses may have differentiated into strategies of “can’t do ‘as oneself’, 'by oneself’ or '˜for oneself’” in which praise and attention are tolerated when the person has assumed a role or character but not when they are caught off guard or when being themselves.
G. A phase in early childhood where there is no remorse for involuntary avoidance, diversion or retaliation responses but by mid childhood-puberty, self directed rage may result from progressive awareness of their own condition and desire but inability to escape it.
H. Avoidance, diversion and retaliation responses or strategies of “can’t do as self”, “can’t do by self” or “can’t do it for self” significantly interfere with the person’s ability to cope with change, transitions, demonstration of academic learning and skills, ability to function in employment, ability to gain or sustain general friendships, manage healthy parenting or sustain long term intimate or sexual relationships.
G. Involuntary avoidance, diversion and retaliation responses and depersonalisation strategies of “can’t do as self”, “can’t do by self” or “can’t do for self”, are not due to the direct physiological effects of any substance or other general medical condition and are not better accounted for by abuse or by other anxiety, conduct, personality, developmental, attention deficit, dissociative, attachment, mood or compulsive disorders.
1:23am
September 30, 2014
➸ Rolling Around In My Head: A Question Along the Way
They didn’t know what was wrong but they were worried. Their son had become remote and uncommunicative. “He’s just not himself.”
Describing their son in words typical to parents of kids with Down Syndrome, “He’s normally a happy, loving kid. We hadn’t expected him to go through a teenage rebellion period but, what the heck, he’s allowed. Then we realized that this is something different. Something darker. We’re worried about him.”
The 15 year old boy was just as his parents described. He didn’t seem troubled, he seemed burdened. He glanced over at me and it was as if he was looking at me from a long way off, not as if we were in a room together. But he was curious. He became present in his eyes. “How long you been in a wheelchair?”
Somehow, I knew my answer mattered. I didn’t want to lie, but I really didn’t want to tell the truth either. Right now I wanted to identify with the chair. “A long time now,” well three years is a long time. “What is it like?”
Truth. “I’m fine with it, others aren’t so good.”
“What do you mean?”
“Oh, you know, staring, laughing, a bit of bullying … that kind of stuff.”
“Huh,” a non-committal sound. I thought I’d hit the mark and his sound let me know I’d missed. Damn that was my best play.
“So how long you been ….”
“Down Syndrome? I was borne …”
“No, I know that,” I didn’t want him to think I was stupid, “how long you been upset like this?”
“Since the show,” he said and made a face like he slipped.
It took a little while but he gave in, I think primarily because he’d been upset for too long. He was tired of it all. He told me that he had been home watching television and he switched to a show that was about Down Syndrome. he said that they were talking about a ‘cure’ for Down Syndrome and he realized later that 'cure’ meant 'elimination’. That most parents choose to not have a child with Down Syndrome. That there was a future without Down Syndrome in it. He was devastated.
For weeks he’s worried about it. About his friends with Down Syndrome. About his parents, did they have the test? Would they have gotten rid of him if they had the chance? He was scared to ask them. Scared about what their answer might have been. After all this, told to me in tone of upset and defiance even, ended in tears. He was afraid that he had slipped by the tests, that he wasn’t really wanted. He now understood exactly where he stood in the world.
[To read more click the link at the top.]
10:46pm
September 28, 2014
Hands up if large groups of aggressively loud white boys in your vicinity freak you out
One of the things that bonds women, POC, and LGBTQA+ together: The fear of white men in numbers.
Did you mean: Congress?
Also disabled people. Large groups of aggressively loud white boys are the ones most likely to retard-bait me in public and get away with it with people watching.
CW: Sexual assault against developmentally disabled women (and FAAB trans folks presumed women at the time), described in detail, below cut.
4:03pm
September 17, 2014
I should repeat this, outside of the other post, because I think it’s important to remember.
The way I’m sometimes treated in medical settings isn’t ableism plus classism plus transphobia.
It’s ableism times classism times transphobia.
I can see it in the way people respond to me. It’s not one thing. It’s this cluster of things that all combine so that to them I’m an unperson. And any one of the things taken on its own would not have the impact that all three has taken together.
I’m developmentally disabled, and at this point in my life I look developmentally disabled. As in, I’m the sort of person who has random people scream retard at them on street corners.
I appear gender-ambiguous to a lot of people, to the point I’ve had hospital people openly question my assigned sex as written on my hospital bracelet. (And it’s the appearance that matters. They couldn’t care less why I look gender-ambiguous. They don’t care that the explanation is, in my specific case, genderlessness. They just care that I have the wrong combination of physical traits for their liking.)
And I’m poor, which is obvious the moment they look at my medical insurance, but I swear that it also shows in my appearance in some way that I don’t fully understand.
And so I become gender-ambiguous poor retard. Which is a thing, not a person. Specifically, an unperson, which is even worse than a thing, as far as I can tell. And those things blend together in their head, and multiply upon each other, and amplify the level of unpersonhood in ways that are hard to explain. But I can tell when I’m dealing with someone to whom I’m an it. They can never hide it from me.
But it’s… weird. Like, to realize how they see me. To see myself through their eyes. To see how those things combine into a blob like that. Until I’m just a blob, to them. (And speaking of blobs, I’m certain that being fat is added into this in a more subtle way. Or maybe not so subtle.)
And this is why I sometimes have to make compromises that other people wouldn’t make. This is why being genderless is a big deal for me in a way that being genderless is not as big a deal if you’re not also developmentally disabled. (I’m not saying it’s not a big deal if you’re not DD. But it’s not as big a deal when it’s not combined with being DD.) Because there’s something about gender ambiguity and developmental disability that really seriously combines to prejudice people in a way where either one alone wouldn’t do it nearly as much. I wish I could articulate what it is about those two things that creates such a toxic mix of prejudices, but I can’t. I just know it when I see it. And being poor – and fat, now that I think of it – just adds to the whole mess.
TL;DR: Being genderless, poor, and developmentally disabled in combination with each other, seems to make some people prejudiced against me in a way that any of the three taken on its own wouldn’t do. I don’t understand why, but I know it when I see it, and I’ve seen it a lot. Especially in medical settings for some reason.
12:32am
September 17, 2014
Terror of being diagnosed with something I couldn’t understand. (Long, has a tl;dr at the end.)
Psychotic was a word I could understand. I wanted words I could understand. I didn’t care if the words were true or not. I only cared that the words sounded powerful, complete, an explanation of everything wrong with me. Call me manic, I’ll be manic. Call me multiple, I’ll be multiple. Call me psychotic, I’ll be psychotic.
But there were other words being used, far more often. Developmentally disabled. Idiot savant. Autistic. Severely complex developmental disability. Pervasive developmental disorder. Atypical autism. Central nervous system disorder NOS with severe sensory and motor issues going back to early childhood.
Those words scared me. They scared me because they did not map to anything in my brain. Psychotic was a word I could understand. Autistic was a word I could not understand. My greatest fear was that whatever was wrong with me could not be understood, could not be named, had no label that I would ever be able to comprehend. So when I heard all these labels that I couldn’t comprehend, it was like my worst fears coming true.
So I tried really hard to be the things I could understand. I thought maybe if I tried hard enough for long enough it would become second nature and become a reality. Someone had said “People become what they pretend to be,” and I thought maybe if I just pretended enough, I’d become something I could understand.
It didn’t happen. If anything, it just made my autism more obvious. I remember walking into appointments with regular medical doctors — like a proctologist, once — and having them ask my parents if I was autistic. They hadn’t seen my records. They just assumed I was autistic based on my appearance and behavior.
9:10pm
September 8, 2014
And yes, in case you’ve guessed.
That means I’m one of the infamous Silicon Valley Auties.
You know, the ones whose parents moved there to find jobs in the tech industry, and then had lots of autistic children because they themselves were either on or close to the spectrum.
My father and mother met because my mom’s brother was my dad’s roommate in technical school. My mom was 15 and my dad was 20 and they fell in love at first sight and never looked back, although their parents made them wait until they finished high school.
As far as I know, my dad got technician jobs, and my mom did things like waitressing until she put herself through community college for a respiratory therapist degree. And then she did that for decades.
So my parents were an electronics technician and a respiratory therapist who always lived either in Silicon Valley or near it because that’s where the work was for electronics technicians.
They had three children. Two of the children were flagrantly autistic, as in these days we’d have been diagnosed before the age of two, possibly earlier even than that. But as it was, we were labeled with other things entirely. The third child is not autistic, but may qualify for cousinhood, and was diagnosed as hyperactive as a child (and may have had undiagnosed learning disabilities that made school really hard for him).
Three autistic people in a five-person family, and two BAP/cousin types.
Three left-handed people in a five-person family, also unusual. (Not the same people as the autistic people. I’m the only definitively left-handed autistic person. Unless my mom is on the spectrum. She’s wondered if she’d have been diagnosable with Asperger’s growing up, even though by now she doesn’t show much outward sign of that. Whatever she is, she’s neurodivergent and so is the entire family.)
Coming from a neurodivergent family doesn’t always make things easier. Even when everyone knows they’re neurodivergent, which we didn’t. Nor did we understand the significance of our neurodivergence.
But even with all the ways our family could be messed up around neurodivergence, I see families where someone is the only autistic or neurodivergent person, and I feel like they are missing out on something.
Because when I look at my family. I see neurodivergence, and disability in general (cognitive, developmental, psychiatric, physical, etc. – everything), and chronic illness, and I see all these people, and I don’t see nondisabled people.
And so somehow. Without anyone saying a word about disability. I absorbed the view that disability is everywhere. That it is part of the landscape. That it is natural. That it is normal. This does not mean it’s always good. Take a look around a natural landscape, you’ll find plenty of briars and poison oak and nettles in addition to beautiful things, and you’ll find plenty of things that are both beautiful and poisonous.
What it does mean is that we are a part of this world, for good. We were meant to be here, we were not meant to be eliminated from the gene pool, we are in the gene pool, the gene pool wouldn’t be what it is without us. We are here, we are part of everything humanity has ever done, we are a part of the world and we will not and should not go away.
That’s what my family taught me without ever saying a damn word about disability.
It meant waking up at night to hearing my mom cough until she vomited. It meant listening to my dad have a full-scale, screaming, crying meltdown when his favorite socks shrunk in the wash. It meant watching my brother flunk some “easy” subjects in school while excelling at “hard” ones, and my mom having to explain to him that being able to spell without spellcheck would not be a job requirement for any job he was likely to end up wanting. It meant watching my other brother do weird sensory integration exercises like walking with his legs strapped to a snow saucer, and being told what my parents had been told about him, which is “Every time he walks it’s like he’s learning to walk all over again.” I doubt that’s true, it’s just what the SI therapist told them.
It meant being in speech therapy myself from the age of six, it meant being in counseling therapy from the age of seven, it meant always being sent to the counselor or therapist or someone psychiatric-like at every school or academic program I was ever part of, starting at the age of seven, and seeing neurologists from the age of thirteen. It meant freezing in place at school while teachers watched children jump up and down on my hands – “It doesn’t hurt her,” the kids said. It did hurt. It meant freezing with fixed, dilated pupils while staring straight into a light source, after becoming super overloaded, and while everyone including teachers noted the situation, nobody even called an ambulance.
It meant growing up and finding ‘support groups’ for people with disabled siblings. And trying them out. And becoming utterly disgusted at the things that people were supposed to think about their disabled siblings. And realizing that the family dynamic where there’s one disabled person and everyone else is nondisabled, bore no resemblance to my family dynamics and that it would not help me at all to be in an environment full of people who thought that sibling support groups were where it’s at.
My family is different. I didn’t know how different until I grew up. I didn’t realize that most families didn’t have a close to 100% disability rate. I realized I was fortunate not to grow up in the eugenics era, and that my family was lucky that most of them escaped it. (All but a great-aunt with “cretinism” – that’s what they called it – who met a man with a similar disability and had trouble marrying him because everyone was afraid they’d have babies like themselves.) Now there are stories coming out I didn’t know about growing up, about great-aunts forced to give up their children because they were in the psych system and weren’t considered capable of raising them properly (which may have been true, or may not have been, I don’t know). Things I didn’t know because nobody talked about it.
Disability wasn’t something you talked about in our family, much. Disability was something you lived. It would make no more sense to discuss disability in depth than to discuss hair color in depth, as far as people were concerned. Sometimes you’d hear someone referred to as 'slow’ or 'tetched’, but mostly people just got on with our lives.
There was ableism, too, plenty of it. My grandmother, upon finding out I was in the psychiatric system, wouldn’t let me sleep in the house after we’d been invited a long way to do just that. She made us sleep in someone else’s trailer. My uncle wouldn’t let me near his children unsupervised. Just because people are disabled or accustomed to being around lots of disabled people, doesn’t mean they’re not bigoted.
But my family is like the poster child for the Silicon Valley autistics. Autistic father, neurodivergent mother with a strong history of autism in her family, move there to find technician jobs, have three kids, two autistic, one 'hyperactive’, and each person in the entire damn family is neurodivergent in more than one way, and physically divergent too much of the time. I came up with the theory that it was people moving there for the jobs, long before the article ran in Wired Magazine. It was an obvious thing to think. Whether it was right or not, who knows, but in our family it certainly seemed to fit.
(My father’s family were Okie migrants to California who later moved to Oregon where they met my mother. My mother’s dad came from, I think, Arkansas to California to Oregon, and the rest of my mom’s family were Minnesota Swedes who moved to Oregon. But my parents moved to Silicon Valley specifically to find work my dad could do, and he flourished there in a rare period where poor and working-class people actually had an opportunity to temporarily climb the ladder. They lost all their money, they’re now poorer than I am, but fortunately they’ve never needed money to be happy.)
So… yep. Walking stereotype here. I’m a hyperlexia stereotype and I’m a Silicon Valley autie stereotype. Probably lots of other walking stereotypes too if I put my mind to it.
tl;dr: My family fits the stereotype of people with a history of autism in their family, or who were autistic themselves, who moved to (or near) Silicon Valley in California in order to find technical jobs, and then created this giant 'autism cluster’ of children born who were autistic. Which includes me and my brother, two out of three kids autistic, all kids, and parents, neurodivergent. Coming from a neurodivergent and otherwise close to 100% disabled family gave me a lot of perspectives that people who are the only disabled family members don’t tend to acquire.
2:53pm
September 7, 2014
Shoutout to all disabled people for whom it is difficult, painful, or even impossible to maintain personal hygiene. Shoutout to everyone who struggles with taking showers, who forgets to brush their hair, who don’t have enough spoons to do laundry as often as they want to. Shoutout to disabled people who struggle with personal hygiene while also belonging to groups for which “presentability” is a large part of avoiding persecution.
You are good, and you are wonderful, and you are dignified. The people who would make fun of you could never be as strong as you are.
Thank you. I needed that. Lifelong gotten shit for hygiene problems. Lifelong can’t do anything about it (beyond what caregivers can do).
4:51am
August 17, 2014
➸ People First win freedom in Tennessee
Read the whole thing (click through the link at the top of this post), but here’s an excerpt. This is what DD people can do, on our own, without parent advocates looking over our shoulders all the time. We got help, but everyone needs legal help in situations like this. What matters is we only got the help we needed, wanted, and asked for. We did this – general-we, the DD self-advocacy community, mostly composed of people with intellectual disabilities. Don’t ever, ever, ever forget it.
“The one child looked at me and said, ‘Help me. Get me out of here.’ He was about six or seven years old. His eyes penetrated me.
"It scared me, and I thought if I could just get that child outside … but they are still in that institution. – Frances Hamblen
3:30pm
August 1, 2014
I/DD in the Southeast: A New Writing Project
There seems to be a lack of things written about intellectual/developmental disabilities (frankly, all sorts of disabilities, but I need to start somewhere less broad than all disabilities) in the Southeast. I would like assist in filling the gap. One person cannot fix the entire gap, but I can fill a bit of it.
I do not know how long (page-length) this project will be, nor how long it will take. It may take years (I am already writing so many things, oops).
If you are developmentally disabled or have an intellectual disability and live in the Southeast, have lived in the Southeast for any extended period of time (I’d say at least more than a year), or were raised in the Southeast, I’d love to hear any comments, insights, and/or experiences you have had in the South. Not all your comments will make it into this project. I suspect that there will be far too many for me to include all of them.
While I am autistic, I would rather not write an entire essay-thing on being disabled in the Southeast based solely on my experiences; autism is but one disability and I have only lived in the state of Georgia (not even outside of the metropolitan Atlanta area, actually).
At some point, I want to publish this (professionally). I don’t have to have your name, just the disability and your experiences. If you do reveal your name, it will be out there, so consider carefully. Also consider the implications of you are giving me something already written elsewhere that can be linked to you.
You can email me at silverbrook.aka.silva@gmail.com. If you need another means of communication, please send me an ask. I’m awful on phones, but I can do my best, for instance.
Signal boosting.
11:00pm
July 20, 2014
Near-death by ableism by denial of medical care.
I almost died last year because of ableism. I was in the hospital. They didn’t want to give me a feeding tube because, they said, I would have no quality of life with a feeding tube. They acknowledged that life without a feeding tube would eventually kill me, from starvation or aspiration pneumonia, whichever got me first. I luckily had the power of tumblr and the Internet behind me, calling the hospital and telling them they were being watched. Suddenly I got my tube. But not before being put through hell and back. And without the support of those people online, I could easily have died in there. They knew I needed the tube, because they didn’t deny the tube, they just tried to talk me out of it. If I hadn’t needed it, they could have just denied it. Instead, they did their level best to talk me out of a life-saving procedure. And that is the kind of ableism that I live with every day.
When I went to the hospital that time, they said that because I had a developmental disability, then they would not admit me unless I had 24-hour staffing from the local DD services agency. They had no reason for this request. I had never required more care than non-DD patients. The only reason they did this was prejudice, and once we called Patient Relations, they rapidly withdrew their demands. And that is the kind of ableism that I live with every day.
By the way, I love my tube. I have loved my tube every day since I got it, complications and all. My tube is my friend. My tube is how I get food, medications, and water. My tube is wonderful, most of the time. But even people who only grudgingly like their tubes, or resent their tubes, still generally want to be alive. And ableism keeps a lot of us from ever getting the chance to try the tube. Even though the procedure is completely reversible, even though the procedure does not interfere with normal eating, somehow getting a GJ tube is seen by doctors as a death sentence. I prefer to see it as a ticket to life, for as long as my life will stand up. I love being alive, and the assumption that I wouldn’t love being alive if I had a tube, that’s ableism all over again.