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Autistic Thoughts
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Below are the 5 most recent journal entries recorded in the "Autistic Thoughts" journal:
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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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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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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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