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Autistic Thoughts
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Below are the 12 most recent journal entries recorded in the "Autistic Thoughts" journal:
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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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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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10:21 pm
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Linkdrop
Thanks to a poster at ![[info]](http://p-stat.livejournal.com/img/community.gif) 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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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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08:28 am
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What Does a Good Autism Organization Look Like?
A good autism organization should follow only reputable, peer-reviewed science, not encourage snake oil treatments based on unverified anecdotal evidence.
A good autism organization should repudiate any 'treatment' which would be considered cruel or inhumane if applied to people of normal neurology.
A good autism organization should listen to the perspectives of autistics when making important decisions, or, better yet, actively include them in the decision-making process.
A good autism organization should not use labels of functioning level, (either 'too high-' or 'too low-functioning'), to dismiss the perspectives of autistics.
A good autism organization should view society's inability to provide autistics with the tools or niches they need to thrive as the true enemy, not autistics or autism itself.
A good autism organization should focus on working to change society to give autistics a place to fit, in addition to or instead of working only to change autistics to fit into society.
A good autism organization should encourage whatever behaviors, technologies, and adaptations best allow autistics to function and thrive in society, even if these adaptations come at the expense of appearing less 'normal'.
A good autism organization should acknowledge the joys of living with (or being) autistic people in addition to the tribulations, and should acknowledge autistic strengths as well as autistic weaknesses.
A good autism organization should not frame autistic strengths as evidence of deficits.
A good autism organization should not act as if developmental delays are developmental stasis, nor that not acquiring a skill 'on schedule' means that it will never be acquired.
A good autism organization should address, or at least acknowledge, the existence and struggles of adult autistics as well as those of children.
A good autism organization should not assume that not being able to speak is the same as not being able to think, nor that not being able to communicate is the same as not having anything to say.
A good autism organization should acknowledge that the communication deficit goes both ways.
A good autism organization should encourage and respect all methods of communication, whether spoken or not.
A good autism organization should not contribute to, affiliate with, or otherwise promote other organizations whose ethics are in opposition to its own.
A good autism organization should treat autistics with the same respect, dignity, and compassion as they treat non-autistics.
These 'shoulds' are not exorbitant demands. They are matters of BASIC HUMAN DECENCY. They should not be at all difficult.
Current Mood: determined
Current Music: Natacha Atlas- "Mistaneek"
Tags: autism, community, disability rights, organizations
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