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Autistic Thoughts
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Below are the 20 most recent journal entries recorded in the "Autistic Thoughts" journal:[<< Previous 20 entries]
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05:20 pm
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A Story of REAL Awareness
( Once Upon a Time.... )
Current Mood:  hopeful
Current Music: Mago de Oz- "Hasta que el cuerpo aguante"
Tags: disability, disability rights, do-gooderism, media, organizations
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10:14 pm
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"April is the cruelest month....."
...too frazzled and exhausted for posting anything particularly eloquent or coherent at the moment, much to my chagrin.
Autism 'Awareness' Month begins today.
Be(a)ware.
Current Mood:  fatigued
Current Music: Tori Amos- "Strange Little Girl"
Tags: autism, disability rights, linkspam, media, video
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08:09 pm
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First Post of 2008
Nothing really interesting to say at the moment, but I had some interesting links I wanted to share.
Creature Discomforts- a series of ads about physical disabilities produced by Leonard Cheshire Disability and the creators of Wallace and Gromit. All of the claymation Aardman animals are voice-acted by real people talking about life with their disabilities and the obstacles they face because of inaccessibility and stigma.
D-PAN- music videos beautifully re-interpreted in ASL by deaf performers. I've kinda been perseverating on their version of "Waiting on the World to Change" and watching it over and over. :-)
the seam of skin and scales- Poem by Little Light. Very powerful and moving, regardless of whether you're cis- or transsexual.
Happy New Year, everyone!
Current Mood:  thoughtful
Current Music: John Mayer- "Waiting on the World to Change"
Tags: community, disability rights, linkspam, media, organizations, physical disability, video
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06:56 pm
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And to All a Good Night
My gifts this holiday season included a DVD of one of my favorite movies, a few interesting-looking books, a couple of scented candles, a pair of home-made pillows just the right shape for hugging, and a tentacle ball the size of my head.
Life is good.
Current Mood: content
Current Music: HP Lovecraft Historical Society- "Here Comes Yog-Sothoth"
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04:03 pm
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A Letter I Don't Need to Send
They did it. They actually did it.
I was in the process of writing a sad, timid little post about the offensiveness of The NYU's Ransom Notes campaign, questioning how such a campaign could be compatible with their stated mission to "eliminate the stigma of being or having a child with a psychiatric disorder", or how they intend to promote 'awareness' by conflating the effects of disorders with the effects of ostracization and stigma (not to mention conflating psychiatric disorders and developmental/neurological disabilities), by presenting exaggerated worst-case scenarios without even the slightest mention of how to recognize the conditions that they were painting such bleak pictures of.
The post was going to be entitled "A Letter I'll Never Send", because I saw no point in sending it. I was nervous and frightened of taking even these first tiny baby steps towards public self-advocacy because I'd already seen others try and fail. When a corporation's only response to criticism and outrage is to take it as "evidence that [their] approach is working", what good can one more outraged voice do? When eloquent speakers, concerned parents, and even entire disability rights organizations all seem to be falling on closed ears, what use is one more person? I felt more small and insignificant than I ever had before I'd become aware of the disability rights movement. If the best we can do is still not good enough, is there any point to even trying?
...except.
Except that it worked. Whether it was the media coverage of the criticism or the online petition or the deluge of blogs and emails and phonecalls or the fact that someone noticed Koplewicz's affiliations with Pfizer and his participation in the infamous Paxil Study 329... it worked. As of today, the ads appear to be gone, hopefully for good.
Thank you, Ari Ne'eman, Kristina Chew, Mike Stanton, Bob Kafka, Jim Ward, Autism Hub, Not Dead Yet, the Autistic Self Advocacy Network, ADAPT, TAAP, Alliance for Disabled in Action, and every blogger, advocate, parent, psychologist or other person of any creed or kind who spoke out against this. Thank you not allowing yourselves to be silenced, for fighting even when it seemed to be in vain. Thank you for making it a bit easier for people like me to add our voices to your chorus next time.
Thank you for hope.
Current Mood:  amazed
Current Music: Rogue Traders- "Voodoo Child"
Tags: ablism, autism, community, disability, disability rights, media, organizations, self-advocacy
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10:01 pm
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Public Service Announcment
I am really not processing coherently enough at the moment to write out a full-fledged journal entry on the matter, but I thought it to be worth mentioning that today is the International Day of Disabled Persons, set aside by the UN since 1992 "to celebrate and acknowledge the experience and capabilities of people with disabilities".
This year's theme focuses on un/under-employment and workplace discrimination. The rest of the site appears to have some pretty interesting articles as well.
Current Mood:  overstimulated
Current Music: Sting- "Desert Rose"
Tags: disability rights, organizations
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04:44 pm
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In Which I Am Apparently Not Pro-Choice
Many months ago, a friend of mine posted an entry asserting that anyone who would make a "I'm pro-choice, but..." statement or otherwise has any reservations about their reproductive rights stance should not truly consider themselves "pro-choice". I didn't say anything at the time; I was even less courageous about my advocacy than I am now, and everyone else commenting was falling over themselves in agreement. I didn't have the time, energy, or confidence to speak up then. I guess I still don't entirely have the confidence since I'm saying this here and now rather than at the time or somewhere they're likely to read it. Better late than never, I suppose.
( 'I am pro-choice, but.... )
I am pro-choice, and I long for the day when all lives will be seen as having equal dignity and value.
Current Mood: serious
Current Music: Massive Attack- "Teardrop"
Tags: ablism, disability rights, eugenics
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03:26 pm
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Possibly the Most Disturbing Thing I've Ever Heard
( We now return you to your regularly scheduled random blogging )
Since the initial news about Katie Thorpe broke, I've been seeking out and reading a lot of posts both in reaction to her case, and older responses to Ashley X... and outside of the disability rights posters (and not even all of them), there's a whole lot of really ugly ideas being voiced. Even though I went into this expecting nothing less, the sheer breadth and depth and vileness of what I've been seeing is still painful.
And even then, some things stand out as especially awful. The fact that I could come across this quote AT ALL (let alone on a liberal, progressive blog, let alone without a single person voicing disagreement):
"Amanda's thread also had a poster who suggested that disabled people should have been involved in the decision-making process, which really creeps me out."
...I just can't even begin to format a coherent response to that emotionally, let alone rationally or verbally.
Current Mood: horrified
Current Music: Genesis- "Land of Confusion"
Tags: ablism, disability rights, sterilization
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03:49 pm
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Ashley All Over Again
Nine months ago, a spokesperson for the British Medical Association responded to the news of Ashley X by stating "If a similar case occurred in the UK, we believe it would go to court and whatever decision was ruled would be in the best interests of the child."
They're going to have to make their ruling a bit sooner than they probably expected.
Not that this should really come as a surprise to anyone who was closely following the news about Ashley.
Katie can't speak, and they believe (or perhaps more accurately, assume) that she understands very little of what they say. To take away the "discomfort, pain, and mood swings", her mother and a team of surgeons want to inflict the discomfort, pain, and possible mood swings of a hysterectomy. Because she supposedly cannot understand menstruation and they believe that the natural functions of her body will cause her unnecessary indignity, they want to subject her to a surgery which she supposedly cannot understand and the unnecessary indignity of an unnatural and painful incursion on her body. She may never marry or have children or know love and consent to sex, but she will know the invasion of her sexual parts without her consent.
This isn't even a "pillow angel" this time, lying in a bed unable to lift her head or roll over. This is a fourteen-year-old girl who loves to go to theme parks and ride horses. She has a family who (supposedly) love her and who take care of her needs, she's described as taking joy in them and in her favorite pastimes- and yet her mother says "her life expectancy is poor". Puberty doesn't have to prevent Katie from doing anything she likes unless her mother lets it- it's not as if there aren't accessible theme parks or wheelchair ramps for disabled horseback riders. This is a disabled girl whose mother is determined not to let grow up into a disabled woman.
This is what comes of the belief that whatever parents of disabled children do to them must be right because "they'd never hurt their child, they love them!". This is what comes of having more sympathy for the caregivers than those being cared for. This is what comes of the infantilization of the disabled.This is what comes of the belief that a life with less ability is one with less quality. This is what comes of the idea that dignity is not something inherent but is something determined on a utilitarian sliding scale.
The United States overturned the compulsory sterilization of the cognitively and developmentally disabled in 1956; the United Kingdom in 1973. I pray that the inhumane treatment of Katie and Ashley does not signify the beginning of a return to those times.
Current Mood:  enraged
Current Music: E Nomine- "Schwarze Sonne"
Tags: ablism, cognitive disability, disability rights, medical, sterilization
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07:15 pm
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These Are Just Some of My Favorite Things
Once again, the post I'm writing isn't at all what I'd planned on posting... real life happened and I'm far too overstimulated at the moment to organize my thoughts on the subject I'd intended to write on. I'm beginning to think attempting to plan out topics in advance is going to be a futile endeavor; playing it by ear is probably the best course of action, particularly if I'm planning on posting daily for a while.
So, for the sake of something fun and calming:
Some delightfully stimmy things
Scented votive candles
Techno music
Ceiling fans
Rocking chairs
Electric massagers
Those oil-in-water toys that you flip back and forth
The sound of rain
Really fluffy cloth
Classical music
Tops
Picture lanterns
Tentacle balls
Current Mood:  stimmy
Current Music: Vangelis- "Conquest of Paradise"
Tags: autism, random
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02:41 pm
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Can you spare a moment to help save a life?
Considering that I've managed to vastly exceed my normal posting rate and blog at least a little something every day so far this month, I think I'm going to be informally commemorating National Disability Employment Awareness Month by challenging myself to have NaBloPoMo a month early this year. I apologize in advance if this means I end up cluttering anyone's flists.
Today's post was initially planned to be something inspired by a conversation I had about adaptive technology, but then I received a link from a friend for ![[info]](http://p-stat.livejournal.com/img/community.gif) projectdownload and decided that this takes priority. I've thus far been lucky to never have to fight the insurance system for needed medical coverage, nor have I been turned down for insurance because of my disabilities, but there are times when it's been a very real concern. I've seen other people I know be denied coverage and it makes me want to scream or cry every time... it's maddening how so many of the people in this country who need medical help most are the same people who are least able to get it. I didn't have the resources to spare to help them then, but I've at least enough time to spare to download a ~3 kb file once a day to help ![[info]](http://p-stat.livejournal.com/img/userinfo.gif) redscorner.
I can't vouch as to whether or not MegaUpload will follow through on their part of this, I can't vouch that anyone's clicks will actually be counted, but I can vouch that you're not asked for any identifying information and the .txt file won't kill your computer or anything if you download it, and this doesn't feel like Munchausen-by-Internet to me.
Pass it on?
Current Mood: serious
Current Music: Rammstein- "Alter Mann"
Tags: community, disability, linkspam, medical
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10:21 pm
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Linkdrop
Thanks to a poster at no_pity, I've been made aware of this lovely short film called "Talk". Stuff like this really needs more exposure.
Watch it here:
Part 1
Part 2
or here, with captioning and sign (presumably in BSL):
Part 1
Part 2
Current Mood:  giggly
Current Music: Rockapella- "Zombie Jamboree"
Tags: ablism, disability rights, humor, linkspam, video
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09:09 pm
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Public Service Announcment
October is National Disability Employment Awareness Month.
I feel as though I ought to do something commemorative.
Current Mood: good
Current Music: Scott Matthew- "Lithium Flower"
Tags: disability rights, random
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12:15 pm
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Inspiration in Odd Places
In a comment over on an old entry at Action For Autism, Kevin Leitch confirms that the anecdotal data contained within the United Kingdom's vaccine adverse reaction database is so poorly verified as to be essentially worthless.
We know full well there is an adverse reaction database. I, a UK resident, was able to make an entry into it stating that a vaccine turned my daughter into Wonder Woman. That’s how accurate and reliable it is.
...I think I may have the beginnings of a plotbunny.
Current Mood: creative
Current Music: Gnarls Barkley- "Crazy"
Tags: autism, fandom, humor, random
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05:08 pm
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In the end, who is it who silences our voice?
If anyone's been following this journal, they may have noticed that slowly but surely I'm accumulating a set of communities and interests to associate myself and this journal with. One by one, I'm looking at communities who share the interests that this journal is centered around, seeing what their membership and message is about, and deciding if they or any of their listed interests are something I want to partake in.
I've found a lot of good communities. I've also found a lot of unrelated communities, and a few bad ones. Today, for the first time so far, I found something that truly angered me.
One of those communities was entitled "We Have Autism", which is designed to be a place for, not autistics themselves, but people whose family members are autistic. Apparently there are definitions of the word "have" which neither I nor my dictionary are aware of.
This alone would have barely risen above the level of frustration and annoyance, except that one of the most recent posts was a poem with the repeated line "The autistics still had no voice". It started off deceptively well, decrying Bettelheim and snake oil treatments and the attitude that it's courageous not to kill disabled children... and then it went on to accuse "eccentric but normal" people of falsely defining themselves as autistic, "plagiarizing their cause", and turning the autistics away as curebies. And the only response was an agreement, in boldface.
As if no one could be truly autistic and disagree with the idea of cure. As if being autistic (or otherwise disabled) is so horrific that no one could conceivably be happy as they are and not want their entire existence changed. As if blatantly autistic activists like Amanda Baggs are just geeks co-opting someone else's cause to justify themselves. As if these non-autistic family members who "have autism" are more capable of acting as the voices of autistics than people who truly do have autism, no matter how mild or severe.
"We Have Autism".
"Autism Speaks".
"Voice of the Retarded".
Who is it who's really silencing the voices of the developmentally and cognitively disabled?
Current Mood:  disgusted
Current Music: The Dresden Dolls- "Girl Anachronism"
Tags: ablism, autism, cognitive disability, community, disability rights, do-gooderism, language, self-advocacy
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05:47 pm
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Aspie/Autie Humor
Borrowed from plf515 by way of Hard Won Wisdom
A guy is flying in a hot air balloon, and he's lost. He lowers himself over a field and calls to a guy "Can you tell me where I am and where
I'm headed?"
"Sure. You're at 41 degrees 2 minutes and 14 seconds North, 144 degrees 4 minute and 19 seconds East; you're at an altitude of 762 meters above sea level, and right now you're hovering, but you were on a vector of 234 degrees at 12 meters per second"
"Amazing! Thanks! By the way, do you have Asperger's Syndrome?"
"I do! How did you know that?"
"Because everything you said is true, it's much more detail than I need, and you told me in a way that's no use to me at all."
"Huh. Are you a clinical psychologist?"
"I am, but how the heck did you know that??"
"You don't know where you are. You don't know where you're going. You got where you are by blowing hot air. You put labels on people after asking a few questions, and you're in exactly the same spot you were 5 minutes ago, but now, somehow, it's my fault!
Current Mood: silly
Current Music: Men Without Hats- "Safety Dance"
Tags: autism, humor
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11:28 pm
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Disability in Comics, Part II
( Data crunching under cut )
Pans
...for blind superheroes who aren't
...for Puck and his writers for prizing the appearance of normality over the ability to actually function in society
...for Saturn Girl's shame over her lack of verbal speech, despite having projective telepathy and despite this actually being the NORMAL state for her species
...for Claudette St. Croix, Legion, and all the other characters in temporary, intermittent, or permanent catatonic states who Marvel inexplicably chooses to call "autistic"
...for complete and utter lack of representation of the cognitively disabled
Pats
...for Mr Fantastic, Aspergian superhero who bucks the trend of Marvel having no clue about autism
...for speech-impaired superheroes using sign language, paraplegics with realistic wheelchairs, and amputees with plausible prosthetics
...for Black Manta, who responds to Aquaman curing his autism... by continuing to try to kill Aquaman!
...for Batgirl/Oracle, who doesn't let spinal injury keep her from being a superheroic badass- or a "big name" comics character
...for Dan DiDio, Denny O'Neil, and other editors at DC for recognizing her value as a prominent disabled hero and repeatedly refusing to cure her:
...And...that went nowhere. Denny shot it down, because, according to him, everybody loves Barbara Gordon as Oracle and as a handicapped character. The theory was that DC didn't have enough handicapped characters, so they weren't going to do anything with Barbara as she was. And the design went into the drawer.
Some stories... are so strong that undoing them would be a crime. The DCU would be a lesser place without Barry's sacrifice, or the crippling of Barbara at the hands of the Joker.
...for all the people in the comics industry who get it to at least some degree and, despite occasional errors, are legitimately trying to treat their disabled readers and characters with respect.
Current Mood: geeky
Current Music: Phil Collins- "In the Air Tonight"
Tags: data analysis, disability, fandom, media
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03:30 pm
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"Fixing" Oracle
So, there've been recent discussions going on in comics fandom over whether or not DC should let Booster Gold go back in time and retcon the events of The Killing Joke so that Barbara Gordon never gets shot and paralyzed. I haven't been participating at all since I don't really have much of an interest in most comics, Western or Eastern, but this, unsurprisingly, piqued my curiosity. Most of the debate that I've seen has centered around whether or not what happened to her fits the trope of "Women in Refrigerators", whether said trope is overinvoked, whether or not 'fixing' the events and letting her continue to be Batgirl is worth sacrificing her character development and role as Oracle (not to mention simultaneously retconning about a million other character's storylines), whether your "classic" version of a character should be called the "original" even if they had a predecessor or not, etc...
And in the middle of it, someone points out: Also, I think changing it would detract from DC's one prominent disabled character whose disability doesn't have anything to do with their "powers".
So, here's some actual data on that:
( Disability in Comics, according to Wikipedia )
Current Mood: accomplished
Current Music: The Cure- "Kyoto Song"
Tags: data points, disability, fandom, media, more data please
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08:35 am
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A Proverb
In the land of the blind, the one-eyed man is forever walking into things because he's too sight-dependent to navigate effectively in the dark.
Current Mood: amused
Current Music: Eiffel 65- "Blue"
Tags: humor, random
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06:50 pm
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*Bury This Story*
Lately, I've found myself thoughtlessly using the word "lame" as an insult, something I've normally made a point of trying not to do. It may not have the same force behind it as "half a person","cripple", "gimp", or "retard", but it's still a slur, and it's still as pathetic an insult as using "gay" as a synonym for "pathetic", especially from someone who's actively trying to fight against the idea that physical disability and mobility impairments are inherently pathetic.
On reflection, I think this bad habit is probably a consequence of my presence on the newsfeed site Digg. I am on there regularly, digging up stories and comments championing the basic human rights of the disabled and digging down articles and comments expressing bigoted or just plain scientifically inaccurate views about us. Comments are buried without any need to give explanation, but burying a story allows you to inform the site's algorithms why you think a bit of news doesn't deserve visibility. Was it a duplicate of an article already posted? Was it spam? Was the headline, description, or article inaccurate? Or is it just "OK, This is Lame"?
Every time I read the explanations to myself as I bury someone for repeating scientifically disproven and debunked theories about the causes of autism, or insisting that there's nothing wrong with disowning your Down's Syndrome child, or insinuating that a pair of wheelchair users suing an inaccessible store must be in it just for the money, or saying that the disabled are just burdens on society and should be aborted... I wind up repeating to myself, "OK, This is Lame".
Every time I bury them, I am semantically equating the people who society describes as "lame" with those bigoted pieces of human garbage. And that's just pathetic.
Current Mood: chagrined
Current Music: Scooter- "Don't Let It Be Me"
Tags: ablism, internalised ablism, language, media
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