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11:29am
August 2, 2015
➸ The Myth of "Official": autism and self-diagnosis skeptics
I’m officially diagnosed, I once posted eight to ten different versions of my official diagnosis (PDDNOS, CNS disorder NOS (with detailed descriptions of autistic sensory and motor traits afterwards), autistic disorder, autistic catatonia, etc.) from over the years from the ages of 14 to 22ish, and I still get called a faker with alarming regularity. If official diagnosis meant anything to these people, they’d have respected mine more than they respect plenty of people who’ve done less to prove themselves than I have. The fact that they didn’t respect my official diagnosis, says everything. They only say this crap to manipulate people.
I also got accused of stupidly self-diagnosing for going in to see a doctor and saying “I think X may be going on”. Which was ultimately wrong, but he (and several after him) concurred that X probably was the problem.
That would usually be considered a totally fine and normal course of action if you were talking about something more value neutral, like high blood pressure or a broken arm.
But, when it’s something stigmatized which somebody else doesn’t want to hear? That can also be “self-diagnosis”, and it’s your own fault if you get abusive treatment and/or things just don’t work out well.
Funny how that works, with the moving goalposts.
I’ve noticed that too.
Also misdiagnosis gets seen differently depending on the diagnosis.
Like I’ve been called a liar for saying I was diagnosed with autism at the age of fourteen.
Why? Because my diagnosis was changed to schizophrenia (at least in the eyes of some of my doctors, not others) when I was fifteen, and when I was sixteen or seventeen I wrote something publicly about being diagnosed with schizophrenia and “wanting to work with autistic children” (read: I had an autistic friend and people told me this must mean I “should work with autistic children” and I was pretty echolalic still when I wrote that and yeah), and therefore I couldn’t possibly have been diagnosed with autism before that point, because if I had, I would have just said I was autistic.
And somehow, like, I wasn’t supposed to be confused. I wasn’t supposed to believe what doctors told me when they said I had been psychotic since infancy and schizophrenic since adolescence. Even though they not only told me that, but told me I would never get better until I began acting schizophrenic (if I didn’t say I heard voices I was told I was in denial, just as an example), and I was living 24/7 in an environment where these people had total control of my life. I was supposed to somehow know that you can’t be psychotic from infancy. I was supposed to somehow know that these people who had control over my life were reading everything they said about me and my family, almost verbatim, straight out of a book from the seventies by Frances Tustin about autism and childhood psychosis (most of the “childhood psychosis” she was talking about would now be considered autism, including regressive autism). And that these doctors themselves were throwbacks with an antiquated view of both autism and psychosis, antiquated even for the time period this was taking place in. I was supposed to know all this as I was going through it as a very confused autistic teenager with a lot of emotional problems due to long-term abuse of a number of kinds from a number of sources.
The fact that I believed my doctors at the time and said exactly about myself what my doctors told me to say about myself is now thrown back in my face as evidence that I’m a liar and that I must really never have been diagnosed with autism at all, or only diagnosed in adulthood.
Read that again.
I said everything my doctors told me to say.
I believed everything my doctors told me to believe.
I did everything my doctors told me to do.
To a fucking fault.
And the fact that I did that.
Gets thrown back in my face.
As evidence that I need to listen to doctors more and that I probably “self-diagnosed” (i.e. “didn’t listen to doctors”).
Also note the assumption that you can’t ever be misdiagnosed after a correct diagnosis.
[This gets seriously long after this point. Be warned.]
106 notes
7:53am
August 2, 2015
Fluttershy’s dark side.
I talked in my post about animals, about the thing people do where they form an imaginary relationship with someone (often an animal, sometimes a human too) and then see themselves as “loving” and being “good with animals” and stuff, even if what they’re doing to the people in question is utterly horrifying.
I was incredibly pleasantly surprised to see this tackled on an episode of My Little Pony: Friendship is Magic. If you haven’t seen the show, Fluttershy is a pony who is generally depicted as sweet, timid, demure, and loving, and “good with animals”, and she has all sorts of animal friends and pets living in and around her house. Normally, on the show, her relationship with animals is depicted as 100% wonderful and loving and caring and perfect. So I was shocked, bowled over, and pleasantly surprised when one episode showed that the way she thinks about animals can actually have a dark side that is wholly unpleasant for the animals in question.
Mind you, I don’t actually dislike her character, and I actually mostly like her relationship with animals. Because most of the time she doesn’t cross the lines she crosses in that one episode. But when she does cross those lines, it doesn’t shy away from how awful it is for the animals. Which is amazing for a children’s show, especially one where her relationship with animals is normally idealized to the point it’s almost like Snow White singing with the birds and shit.
Unfortunately, the video itself has been taken off YouTube. However, I found a transcript I made of it years ago, so I’m going to post that. It includes descriptions of her actions, not just her words:
FIRST SCENE
Fluttershy singing:
At the gala
In the garden
I am going to see them all
All the creatures
I’ll befriend them at the galaAll the birdies
And the critters
They will love me big and small
We’ll become good friends forever
Right here at the galaEveryone singing:
Your dreams will come true
Right here at the galaSECOND SCENE:
Fluttershy:
Oh my, a meadowlark!
[Someone else whistles a few notes]
[Fluttershy gasps]
Fluttershy: I think she’s calling to me, it’s exactly what I wished for!
[Fluttershy sings the same notes]
[Someone else whistles the same notes]
[Fluttershy whistles the same tune a little lower in pitch]
[Someone else whistles the original notes]
Fluttershy: My little meadowlark is right around this bend!
[Around the corner is a brown pony with a tall hat]
[Brown pony whistles the same notes]
Fluttershy: Was that you?
Brown pony: Yep! I love whistling while I work.
[Brown pony whistles the same notes]
Fluttershy (sounding upset): Oh. Yes. Well, excuse me…
Fluttershy: Oh! I see a [toco!?] toucan, and a spider monkey. And oh! Is that a wallawoo?
[The animals rush away in an instant]
Fluttershy: Oh Fluttershy, you’re such a loudmouth.
THIRD SCENE:
Fluttershy has set up a drop trap with a carrot as bait.
Fluttershy: I just have to be more bold like Twilight says.
[Fluttershy backs away from the trap, pulling the very long rope with her towards the exit to the garden.]
Fluttershy (to animals, in an odd voice): I’m so sorry to have scared you, my friends. You can all come out!
[Fluttershy quickly ducks behind a bush with the rope still in her teeth]
[Some sounds are heard, and Fluttershy pulls the rope]
Fluttershy: Gotcha!
Fluttershy: It’s okay, I promise not to hurt you, I just want to be your —
[The brown horse from before is munching on the carrot]
Fluttershy: …friend?!
Brown horse: Mmm. Sounds good to me!
FOURTH SCENE:
[This whole scene is set to music someone else is singing, similar to the hokey pokey.]
LYRICS: You stomp your whole self in
You stomp your whole self out
You stomp your whole self in
And you stomp yourself about[This whole time, Fluttershy is throwing herself at various animals, who run away before she can touch them and can be seen hiding in trees and bushes.]
LYRICS: You do the pony pokey and you give a little shout
Fluttershy: COME OUT!!!!
LYRICS: That’s what I’m talking about
Fluttershy: I’ll catch you yet my pretties. Oh yes. As soon as one of you little birds, or monkeys, or bears touches this net, you’ll be mine! MINE!!! [Evil, shrieking laughter.]
Fluttershy: What??
[Fluttershy trips her own trap, which pulls her up into a net. A rabbit comes up to investigate.]
FIFTH SCENE:
[This is inside some sort of huge room at the gala.]
Twilight: Well… it can’t get any worse.
[The entire building starts rumbling and shaking. People look really confused.]
[The doors burst open and a huge bunch of animals from the garden come rushing in, terrified and trying to get away from Fluttershy]
[Fluttershy appears in the doorway after all the animals have come in. She looks worn out and angry.]
Fluttershy (words increasing in volume and anger): You’re… going to LOVE ME!!!!!!!!!
[The various animals run away.]
Just… wow. (Lots and lots more discussion behind cut, some of it redundant from my last post on this subject, some of it new.)
11:20am
July 31, 2015
Can we talk about how autism discourse often revolves around throwing people with intellectual disabilities (and other cognitive stuff) under the bus? Like I’m reading something and it involves literally saying “well at least autistic people can actually be really smart and not have cognitive/intellectual disabilities!”
First, autism and intellectual disability are not mutually exclusive.Second, intellectual disability does not preclude meaningful lives. Intellectual disability does not mean people cannot have input on their own lives and choices.
Stop talking about it like autism is higher up on a hierarchical scale and that’s why autistic people are worth something.
People are worth something because they are people.
This gets especially intense around autistic people who use FC.
I got my head practically bitten off by a facilitator who told me that “motor planning problems aren’t cognitive impairments” and I was like “actually yes they are, they’re where thinking meets movement, that’s cognitive“. But he didn’t get it, didn’t want o get it, he just wanted to keep pretending (and passing along to his clients) this idea that autistic people’s cognitive impairments are just a myth, that autism is just almost like a form of cerebral palsy where your body doesn’t move how you want it to but you think just like everyone else.
Physical disability rights people are no better. I know someone who did a research project on disability pride in the mainstream disability rights movement, and she was shocked to find that most of it boiled down to “at least we’re not retarded”, sometimes in exactly those words.
And there are segments of the DD movement where autistic people are put at the bottom of the barrel.
From what I can tell, generally at the bottom are DD people of all kinds (including autistic people but not limited to us), and people with psychiatric disabilities, and different ones come out on top in different situations, often with people shifting around depending on the situation.
But yeah been speaking out against cognitive ableism in autistic communities since forever because it’s been a thing since forever, and a much worse thing than just about anyone is willing to acknowledge.
8:45am
July 1, 2015
➸ Op-ed: Why, No Matter What, I Still Can't Marry My Girlfriend
In my time as an LGBT rights activist, I have never really focused on marriage. I felt that, particularly as a disabled trans woman, there were more important things to be done and heavier institutional oppressions to address. Then I started dating Jessica.
Jessica, my partner, is a trans woman living in Oregon who, like me, receives disability benefits. And while I still do not wish for marriage equality to be at the center of the LGBT or disability rights movement, being with her has put marriage on my mind. Even before the Supreme Court ruled in favor of nationwide marriage equality, I kept getting stuck on one fact: Even if Jessica and I can legally marry, we really don’t have the option to.
That is, we don’t have the option unless we want to risk losing the disability benfefits that sustain our survival.
I began to realize this at the tail end of 2013. Jessica friended me on Facebook, thanks in part to another transgender activist. I did not take much notice until New Year’s Eve, just when I was about to head out of Philly for a few days. She volunteered the information that she, like me, had Asperger’s, so later that night when I was drinking some microbrews in a motel room, counting down the hours and minutes until 2014, we got deeper into conversation, and we hit it off.
Now, almost 18 months later, “Jordessica” is still going strong, despite her being a little bit country and me being a little bit rock-and-roll. Not to mention the fact that we’re in different stages of gender transition, that our relationship is long-distance, and that we’ve suffered near-suicide attempts, my stint of homelessness, and a transcontinental move to California that happened because I ran out of options. She is my soul mate and best friend, and I hope that we can one day have our own apartment and grow old together on the West Coast. We consider ourselves spiritually married, though it would be practical if we were able to be civilly married too.
However, various forms of disability benefits that we have between us put a constraint on the possibility of our legal marriage. For Supplemental Security Income, the total benefits between two individuals are automatically reduced 25 percent upon marrying, and if only one is receiving SSI and the other has more income, “deeming” — or as I call it, the “sugar daddy provision” — comes into play. Deeming assumes that a person who receives SSI and is married to a person with significant income or resources will be taken care of, and thus the benefits will be reduced or eliminated for the SSI recipient, no matter how much the richer spouse keeps their resources separate.
For Social Security Disability, marriage does not affect benefits, except for those who are in the Disabled Adult Child program, which provides assistance for those who don’t have a significant work record and were disabled before age 22, but have a parent who is retired or deceased and has a long work record. One of the stipulations of being in this program is that the individual cannot marry on pain of complete loss of benefits. A similar rule exists for VA Disability and Indemnity Compensation benefits as well, and marriage can mean a concomitant effect on other nonmonetary benefits such asMedicaid and food stamps.
Sounds convoluted? Well, this is what happens in our society’s overly complicated and fragmented social safety net. And these are considerations that invisibly effect thousands of aspiring same-sex spouses daily.
The best solution to this issue, as I see it, would be for the federal government to establish single-payer healthcare (to obviate the need for Medicaid) and a basic living income for seniors and those with disabilities, regardless of work history or marital status and not tested on the basis of means or assets (to reduce the need for food stamps and other means-tested programs).
There are other solutions being discussed online, in such places as the Marriage Equality for People With Disabilities Facebook page. Leading trans and disabled activist and filmmaker Dominick Evans has created an informative video of him speaking on these issues at a Cincinnati marriage equality rally. As he puts it:
“When we get marriage equality, some people in our community will not be able to get married anyway — and that’s people with disabilities. While people with disabilities can technically get married, we really don’t have a choice because there are so many barriers placed in front of us that keep us from marrying the people we love. Gay or straight, people with disabilities are fighting the same battle.”
As Evans points out, these barriers to marriage for people on disability programs aren’t LGBT-specific. But as Audre Lorde once said, “we do not live single-issue lives.” Indeed, neither Jessica nor myself live single-issue lives, and there are LGBT people who are being left behind in the marriage equality movement. We need to keep sight of this in the midst of the excitement over the Supreme Court ruling.
Sadly, because of a culture of respectability politics and antipathy to “welfare,” the movement for marriage equality for people with disabilities still faces an uphill climb, but these issues are necessary and part of a bigger conversation about health care and benefits that affects everyone. To get to the top of that hill, all LGBT people must have solidarity with different groups whose identities they don’t share, and to center the voices of those with multiple marginalizations — including trans lesbians with disabilities, like Jessica and me.
After all, while she and I may not ever be able to work, we are more than our ability to contribute to the economy. Rather than being turned into inspiration porn, we deserve to have health care, housing, and income security to meet our basic needs, with enough left over for trips out to the Pacific Coast to enjoy the sunset together as two happily married women.
JORDAN GWENDOLYN DAVIS is a disabled transgender woman from San Francisco who writes on the intersectionality of disability, gender, gender identity, and class. She can be reached at jordangwendolyn712@gmail.com.
Wow someone actually mentioned the fucked up stuff about the Disabled Adult Child program. Given that I’m in that program and even my state’s Medicaid has to be reminded it even exists (and Social Security representatives routinely confuse it with SSDI and can’t give straight answers on the legal issues of anything about it because they’re not trained in it because it’s too obscure or some crap), I’m impressed. People with developmental disabilities, btw, are way more likely to be in that program than other disabled people, as if we don’t have enough other legal obstacles to sexuality and marriage.
3:40am
June 25, 2015
Because I’m not managing the right words right now for anything despite much I want to say.
10:56am
May 24, 2015
“Odyous of olde been comparisonis, And of comparisonis engendyrd is haterede.”
Every autistic person I meet is both “more autistic” than me in some areas and “less autistic” than me in others, while the same amount in others. This holds true when comparing any two autistic people. If you don’t understand this, that’s okay. But if you don’t at least acknowledge the truth in it, you shouldn’t be even trying to make comparisons between two autistic people. Whether you yourself are autistic, or not. Whether you are so sure that you’ve picked up on the real differences between two people just by looking at them, or not.
6:01am
May 24, 2015
“If you’re bold as bold
And sure as sure
I’ll hold a mirror at the door
You can answer as I knock and see
You are only as human, as human as me”-Donna Williams, “Icon I Am”, Not Just Anything (Jessica Kingsley Publishers, 2004)
12:21am
May 20, 2015
autistic people who are “pro-selective cure” are people who know that the idea of selective cure is never going to be realistic. that any “cure” that could be made that isn’t eugenics (which is also, frankly, entirely unrealistic) would be administered to “low-functioning” autistic people all the time without their consent. which at the end of the day, they don’t care, because they don’t actually care about the autonomy of “low-functioning” people, because they see them as less than and “miserable disabled people”. they also, somehow, fail to realize that they cannot be “pro-acceptance” and “pro-selective cure” because the existence of a cure will directly undermine the concept of acceptance. autistic people who choose not to take “the cure” will be subjected to all kinds of “choosing to be disabled, so don’t deserve respect/accommodations/etc.” BS.
so never mind the fact that this magical sort of cure will never exist, but even in a hypothetical world it’s a complete disaster.
I doubt you’d be spewing the same bs if you shat yourself all day.
You don’t speak for them. I’m trying to get them a voice.
Something I’d like to point out that I had forgotten until the ‘shat yourself all day’ part. People use this to say ‘look at these people who can’t even hold it in because of their autism’. And well, yes, their autism is probably a factor in why they don’t go to the toilet in time. But ‘all day’? Pick just a random point in the day, any time, now if you like, and try and go to the toilet. Unless you’ve drank a lot recently, or had a curry, you probably can’t physically get anything out. But these people can. So, how does autism change this?
Answer: It doesn’t. GI problems are common in autistic individuals, but autism is a mental disorder, and doesn’t affect basic body functions. Sure, higher functions like remembering to go to the toilet are affected, but the actual needing the toilet bit doesn’t change. The GI problems are a comorbid disorder, probably (though not definitely) caused by a set of genes that commonly occur alongside autistic ones, but not all the time. We know they don’t occur in every autistic individual, because then every autistic person would always need the toilet. So, curing the autism wouldn’t actually cure the GI problems, it would just make them easier to deal with.
I’m not arguing for or against anything with this, just pointing out that comorbid disorders wouldn’t be cured along with autism, and indeed there may be multiple causes of autism in the first place, such that a single cure wouldn’t work.
Just reblogging because yeah, it’s really important to remember that co-morbid disorder are not autism.
^^^
“i’m trying to get them a voice” they say as they speak over autistics whose struggles they know nothing of
I’ll dissent a little bit and say that I do think that problems with controlling bowel movements can be autism-related. The mind and the body are connected, after all.
But the people currently searching for a cure for autism aren’t going to come up with anything useful in this particular department, because mostly they’re either quacks or mainstream scientists who aren’t focusing on the right things because they’re so convinced that autism is a social disorder. Which is an entirely backwards way to look at it. I certainly wouldn’t expect these researchers to produce anything useful until they change their paradigm. By a lot.
So, yes, in addition to just being an asshole comment, ingen-u-e’s comment ignores the fact that most autism research just isn’t focusing on those kinds of quality of life issues.
I completely dissent on the whole bullshit thing where people say “Anything bad about autism isn’t really autism, it’s just some additional condition.”
I wear Depends because of autism.
Yes, I can use a toilet. (No, I can’t wipe myself in the back, and that’s also autism-related. I have a bidet for that.)
But no, I can’t always get to the toilet.
That’s a combination of two issues:
1. Autistic inertia.
.2. Sensory issues that make it hard to tell when i need to use the bathroom.
Oh and I don’t want to be cured so don’t use me as an example namelessly as one of those people who “shits themselves”. Shitting oneself – any kind of autistic trait, no matter how unpleasant – does not make a person decide they automatically want a cure, or that they automatically don’t want a cure. Saying that shitting myself means I want a cure is telling me that I have no ability to think, no agency of my own, that my “symptoms” dictate what I think..
And don’t assume that the people you’re talking to don’t have (or never had in the past, or never will have in the future) the issues you’re describing.
I have known several people employed in high tech industries who shit themselves on a regular basis and wore Depends because of it. It was their secret and nobody knew.
And please everyone stop doing the thing where you scramble to make any bad thing about autism into “not really autism”. That doesn’t help any more than the people who use bad things about autism to claim they know the wants and desires of everyone who has those bad things. (If they even see them as bad and not just a part of life like any other.)
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.
7:44pm
May 3, 2015
When people talk on the phone for me.
I often have phone conversations where I type out what I want someone to speak into the phone, because using my synthesized voice often creates too much trouble in both directions.
But people do things that drive me nuts:
1. They try to correct the pronouns. So I’ll write “I want to do something” and they’ll say “She wants to do something.”
2. They’ll try to paraphrase things rather than just reading out loud what is on the screen without changing it.
3. If I swear, they’ll skip that entirely.
None of which helps either me or them. Because it makes it *harder* for them – they have to think of which words to change and why. If they’d just read what I wrote, then I would get my ideas across (often they think if they simplify what I’m saying then people will understand it better – the opposite is almost always true, which is why paraphrasing doesn’t work), and they wouldn’t have to do all the mental gymnastics involved in doing all the things I didn’t want them to do in the first place.
Oh well.
2:07am
April 30, 2015
Hello, I exist.
I see you. I see that you exist too. You are important.
Hello, I exist.
Hello, I exist.
Is there anybody out there who understands my language?
Repeat in all known languages and frequencies.
Not languages like English, Tagalog, Icelandic, Mandarin, or Tsalagi.
Languages that each person speaks their own, or slightly modified versions of someone else’s.
The languages spoken by disabled people who — whether we can seem to speak or type fluently or not — have severe problems communicating in words, or understanding words, a large portion of the time. This is not something you can tell from the outside, especially if you’re not disabled. So don’t tell me it doesn’t apply to me because I used to talk and now I type so obviously words are no problem for me.
I’ve spent half the night in one of my brain caves, unable to get the words out that I meant, so writing other words instead.
But that’s not my point. Trapped as I feel right now.
You need to know something.
And that is that we have a million different ways of saying the same things:
“Hello. Is anyone out there?”
“Hello. I exist. I exist. Please acknowledge. I exist.”
“I see you. I see you. I see you. Do you see me?”
“I see you too. Can we see each other?”
These conversations take place across crowded institution hallways without staff being the wiser.
When they do their experiments that supposedly prove that random autistic people placed in a room don’t communicate with each other… you can bet that in some of those experiments, the autistic people are communicating right under their noses.
This is also something even autistic people get wrong. Many of us assume that we only learned to communicate this way because we had to — because of a severe communication impairment, whether receptive, expressive, or both, whether recognized as such by others or not. And we assume that people without those problems won’t learn to communicate in this way.
But this form of communication is natural for many autistic people, and once exposed to it, many autistic people will find it so familiar, from somewhere deep in their soul, that they will learn it almost instantaneously.
Have you ever heard an autistic adult tell the story — it has a million different forms for a million different people — of visiting a place meant for autistic children. School, institution, play group, whatever. And an autistic child who has never shown any detectable interest in other people before, suddenly runs up to the autistic adult and shows blatant interest in one way or another. I have had this happen to me more times than I can count, and I am no longer shocked by it, but lots of parents and teachers are.
“I don’t understand, he never approaches anyone, let alone with so much affection.”
But sometimes it’s worse.
Sometimes it’s “That’s not really affection, she probably learned it by rote somewhere, she’s incapable of caring about you.” (Said to me when an autistic woman a couple years older than me sat down next to me, snuggled up, rested her head on my shoulder, petted my hair, and said “Nice… nice… nice…”)
Anyway…
Hello. I’m here. I exist.
I feel like I’m trapped in a cave.
I can barely get the words out that I want to get out. I’m relying on a lot of other words, things I wanted to say other times and couldn’t.
So much of the time I lie here and think up what I want to say, and hope that one day those things I wanted to say will come to my fingertips at the right time.
I wish that the hello, I’m here, I exist, type stuff worked better over the Internet.
I would hand you a rock, I would let my body change its movements just slightly to acknowledge your presence, there are so many different ways to do it in person. So few ways to do it online, though they do exist.
“Does he speak the autistic language?” I remember being in a tiny mailing list for autistic people where most people there spoke a highly metaphorical version of English. There are so many “autistic languages”. My father spoke some of the same ones I do, and I didn’t even realize it until he was dying, and then after he was dead. He spoke to me through objects, and I understood so much more about him than I ever had. It was as eye-opening for me as reading my poetry was for him.
The photograph at the beginning of this post, with the amber ring and the orange and white agate stone, is, of course, related to this entire post.
I’m tired. I want to sleep. Not sure I can.
But I also feel trapped in my own head, have felt that way for days now, and wish I was around people who could see inside me, communicate without language, understand the tiny little differences in how I move and interact, and vice versa.
Finally, a poem by Jim Sinclair. It’s allowed to be reproduced as long as you credit Jim Sinclair and say that it came from an issue of Our Voice, the newsletter of Autism Network International:
Autispeak
This is the language we speak,
we who can talk without sound.
This is our voice in the silence
Where every word has weight, and no thought is ever lost.
This is the language we speak,
we who embrace without touching,
This is our dance without bodies
Where every touch has meaning, and no glance is ever wasted
This is the language we speak,
we who can see without looking.
This is our star behind darkness
where velvet rainbows sing, and no tear falls unseen.
This is the language we speak,
we who can float outside time
This is our home beyond nowhere
where shadows’ footsteps fall,
where memory echoes from the future,
and comfort flows back from the past,
where smiles have no need for faces,
and warmth breathes from the frozen places
This is our source, our destination, where every song is heard, and no soul shines unknown.
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.
10:41pm
April 29, 2015
How (un)ethical is it for a 35 year old psychologist and musician to use his teenage child patient’s poetry as song lyrics for his professional band?
One of my shrinks was a professional musician. And he was always interested in my poetry. Most of it, he said, was crap, but occasionally I’d come out with something amazing. This pretty much agreed with my self-assessment.
But then he found this one poem he really liked. I was still a minor when all this happened, but he wanted to use it for lyrics in his band. So he had me sign some rights over to him.
But it just occurred to me, isn’t there some huge ethical boundary being crossed when you’re a roughly 35-year-old psychotherapist and musician, using material from your teenage child patient?
I mean, at the time I was a little flattered. “Wow, a professional musician thinks my writing’s good enough to use in his band. That means my writing is actually good, someone besides my parents like it (since parents mostly like anything their child does, because it’s not about skill it’s about connecting with their child).“
But now I’m kind of squicked. Is what he did even legal? I was a minor. Yuck.
12:25am
April 17, 2015
Frustrated. Not a giant squid.
I can’t make my body do what I need it to do.
I feel trapped a lot of the time.
Worse, the people who take care of me have let me get into the mess I got into with meds.
They put me at the center of my life. Which sounds wonderful in theory.
But imagine you’re sitting at the center of a moving kaleidoscope of sensations. Can’t make sense of more than a little. Can control even less.
They tell you how smart you are. Think they’re complimenting you.
You only have two hands.
You only have two hands.
And your species expects at least fifty if not a hundred hands and a brain multitask enough to work them all at once.
You have ten fingers two hands lucky if you can work them all at once in coordination.
They set you at the center of a life-controlling device designed for fifty to a hundred hands and the brain to match.
Your two hands and mono track brain can barely keep you alive. No matter how “smart” you are.
You see a catastrophe coming months away. But to tell anyone, you’d have to take your two hands off the life support system. So you don’t. They wonder why you cry and get more and more agitated.
I’m not a fucking octopus. I’ll never be able to even simulate being an octopus.
I’m scared though I told everyone during this latest crisis I’m not an octopus I can’t be at the center of the machine any longer. And I doubt very much that any of the ones with real power knew what I meant. It’s only those front line staff who see me struggle day to day who have even half a clue and they have almost as little power as I do.
I want help. I want everyone with lots of arms to lend me their arms instead of saying I’m smart enough to turn two arms into fifty. Which has nothing to do with smart.
5:09am
April 6, 2015
“I never give clinical advice from the podium.”
—Dave Hingsburger, a public speaker on developmental disability issues primarily from the caregiver’s point of view (although he also uses a wheelchair from a non-developmental disability)
But seriously.
If you do any public speaking on disability of any kind, including developmental disabilities, including autism?
Memorize this. Or memorize something that means the same thing, a phrase you’ve made your own, to suit your own needs. I’d feel awkward saying “clinical” because I’m not a professional, so I’d say something like “I don’t give that kind of advice from the podium”, then I would be prepared to explain exactly why.
Because if you do this kind of public speaking long enough, someone will ask you to explain ”what to do about” something pertaining to their child, their coworker, their friend, their sibling, their student, whatever.
And it would not be remotely ethical for you to even try to answer such a question. Even if you really thought you had an answer. I’ve made this mistake more than once, but when i heard Dave say “I never give clinical advice from the podium,” everything clicked into place – this was not only something that I had trouble doing, it was also something I should not be doing or trying to do in the first place.
Why is it unethical to try and give such advice? Well, you don’t even know the person. Or if you do, it’s not your business to spread their business in front of an audience, no matter how large or small. But generally you don’t know the person. Even when you do know the person, advice can go drastically wrong. Imagine how much more disastrously wrong it could go if all you know about this person is essentially a sound bite from someone who knows the person.
And no matter how well they know or think they know the person, they could be giving you inaccurate information or leaving the most important parts of the information out.
This is not to mention whether the person themselves would want to be discussed among strangers, even anonymously. I had a lot of respect for a mother who said that for the first time in years, she would be able to show pictures of her daughter in her presentations. She’d done it for years without even thinking ofher daughter’s opinion. Then she started asking her daughter every time, and making sure she knew it was always okay to say no. Year after year, her daughter said no. This year, her daughter said yes, and then, and only then, would she show her daughter’s photos again.
It’s a matter of safety, it’s a matter of dignity, it’s a matter of respect, it’s a matter of knowing your limitations as a speaker.
And if you do like this idea, and you do have to use it during a presentation, give credit to Dave Hingsburger, the video it’s on is called “The Ethics of Touch”. The video is too expensive for most people to afford (I received it as a gift), so you may never see the video unless you know a person or agency that has a copy. But this quote is from that video, so if you’re going to give him credit, mention the name of the video the quote is from.
But seriously. Hearing this made me a lot more comfortable in telling people ‘I can’t do this.” Because I never felt right doing it. I never even felt I could do it, which really nobody can. But I had this weird idea that because the question was asked, I was doing something wrong by not answering. Dave’s quote gave me permission not to do that.