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If this video does anything, it makes the autistic child look like a lost victim of a plague that wasn’t caught in time, the parents failures for not ‘catching it in time’ and the autistic community a group of pariahs. It uses scare tactics and I feel veiled threats that feel to me more like a marketing campaign than a personal expression of the creators (the spin that I’ve read AS has put on this). Sure. Express yourself… your anger and pain as a parent… but don’t post it on “Autism Speaks” because if you’re not on the autistic spectrum, you aren’t speaking as part of the broad diversity of autistics… you’re speaking as a parent of autistic children (according to AS), and your voice shouting loud, full of fear and negativity, merely silences us, victimizes us in the eyes of society, marginalizes our potential contribution to society, and creates a culture that can seek to further exclude us for our difference. Watch the video… do you want the child, as portrayed, playing with your children? That child is portrayed as tainted.

Autism Speaks presents us as puzzles and broken children… not the puzzle solving remarkable individuals history suggests we are.

Groups Outraged Over Video Released By Autism Speaks

A group of leading disability organizations is calling on Autism Speaks’ benefactors to end their support for the organization. The move comes in response to a video distributed by Autism Speaks which critics say depicts people with autism as less than human and burdens on society.

The video, which aired at Autism Speaks’ World Focus on Autism event earlier this week in New York, features two parts.

The first part shows young people with autism as a voice-over declares, “I am autism.” The man’s voice continues by describing autism as a disorder that works “faster than pediatric AIDS, cancer and diabetes combined,” will ensure that your marriage fails, will bankrupt you, cause you not to sleep and make it “virtually impossible” to go out in public without experiencing embarrassment or pain.

The second portion of the video features more hopeful images. The voice-overs declare that through love for their children, parents and others will work tirelessly to overcome the challenges autism presents.

In response, disability advocates are now coming together to condemn the video, which they say is part of a pattern of behavior by the nation’s largest autism advocacy organization.

In a letter being prepared for open circulation next week, the group of advocates say the video is a “fundraising tool” that relies on “fear, stigma, misinformation and prejudice against autistic people.” The letter will be sent to Autism Speaks donors, sponsors and supporters and it will be posted publicly, organizers say.

Already the American Association of People with Disabilities, ADAPT and TASH are among the organizations that have signed on to the letter organized by the Autistic Self-Advocacy Network. Other organizations are now reviewing the document….

The group of advocates go on to ask the public to no longer support Autism Speaks and instead find new ways to support people with autism and other disabilities.

“Autism Speaks believes that its bottom line will be helped by portraying autistic people as less than human,” says Ari Ne’eman, president of the Autistic Self-Advocacy Network. “This is really damaging if you’re trying to get your child included in school or if you’re an autistic person trying to find a job or get included in society more broadly.”

When asked about the video, Autism Speaks representatives tried to distance the organization from the short film, which appears on the group’s Web site and includes home videos solicited through the organization….

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Mirrored from Lemmingworks.

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Please Stand By has a great picture of my friend nick, finally home with Aleja after 378 days in hospital. I’m sure the last think they want to bother with is being inspirational, but they both are inspirational to me. Not for any magical hollywood reason but for a myriad of very practical and human traits they both carry in abundance. And the great colour coordination :)

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Mirrored from Lemmingworks.

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Blogging Against Disablism Day, May 1st 2009

To be honest, I don’t get it. Mostly because ablism and disablism are sort of the same things. Anyway, that’s just me who gets borked by works. You can read more at Diary of a Goldfish: Blogging Against Disablism Day - 1st May 2006.

I have very little to do with the disability community aside from helping out with http://gimpgirl.com/ and the Adaptive Design Association, and visiting sites like Wrong Planet. Most of my education comes from Aleja, Jen and Nick, and to a large extent from my students. Early Childhood Education students that I’ve worked with have all done what they call ’special needs’ placements, and some how are returning for graduate work have years of experience working with special needs children.

What I’ve noticed that strikes me is how few of the people I know who are well aware of disability actually have worked with someone in a position of power (teacher, boss, administrator) who lived with a disability. I know of only one, myself. And I have 2 colleagues at school who I personally interact with who have issues that would be considered disability issues.

I think we end up with a cultural attitude that people with disabilities must be serviced and cared for. Of course people with disabilities must be accommodated and buildings must be made more accessible. And when we’re dealing with people who have cognitive challenges, appropriate supports to enable them to do the work in an equitable environment. I assume that if you remove systemic barriers to access, then whatever our challenges, we can do the jobs to the best of our abilities. That doesn’t mean that I who is math impaired has a right to do math, and have to be accommodated. It means that if my job is to teach and do research, but I have a visual impairment that does not make it difficult to do my job, but makes it difficult for me to get to class or recognize students faces, then those barriers must be accommodated, to allow me to do the job I’ve been hired for. If I have mobility issues, and our transit system is unreliable, how can I get a job and show up on time if the system does not support me to move around town as easily as everyone else. Toronto’s really bad, IMHO, in terms of accessible public transit.

We need more David Onley figures, but he’s too distant. We need more people with disabilities living IN our communities, having families, taking their kids to school, being teachers, doctors, lawyers, and not just people at a distance. Strangely enough, there probably are a lot of people in that position, but because they can ‘pass’ for ‘normal’ and they know the stigmas that are attached to disability, they prefer to stay quiet.

Everyone knows that I’ve been assessed as high functioning autistic/Aspergers if you’ve been in my class, though I’ve only hinted at it in other places, but that’s because I’ve been told by friends to not talk about it. Something to be ashamed of, or at least hidden. The problem with that is that the solution, or a solution, to dealing with dis/ablism issues is to not hide, but to be out there, intimate and interactive… as with other forms of discrimination, fear and ignorance are best countered with experience and engagement.

That’s all I have to say about that.

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People Who Sit In The Disability Seats When I’m Standing On My Crutches is an example of what everyone should do… call people out on their actions. Thanks for the URL A!

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Thanks to Aleja for this link. Not perfect, but a good over view, i guess.

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I saw this video Dancing Chair on Frida Writes and thought of ken for dance, but also as an exercising medium to get people, who can, use their lower body and build up core muscle strength while freeing hands to hold and get things while moving around, say, one’s apartment. I can see lots of problems with it, right now, because I don’t think anyone could use it without a support person if things go awry, but the notion of hands free operation is very interesting.

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NerdKits - Servo Squirter

In this video, we’ll show you a simple project where we connect a hobby R/C servo to a small water pump, and control both from the USB NerdKit. Using input from the connected computer, you can aim, and fire a stream of water. The video also introduces topics like Pulse Width Modulation (PWM), including how hobby servos share a common protocol (1.0 to 2.0ms pulses), and how to use the ATmega168 to generate these pulses. Perhaps you can add another servo, and use this to water your plants?

When I saw this, I said, “Nick (Aleja’s beau) NEEEDS one of these!” I wonder if I Can find someone to make one up. And it is Mac compatible!

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Tina Fey As Sarah Palin In VP Debate On SNL (VIDEO) is cool. Thanks Aleja. Does a good job of equal opportunity trashing. What I’d not realized from the previous SNL Palin thing was that they mostly used her words. This one’s more fun. Palin On Fox News: Couric Annoyed Me is even better. Nothing like getting hung up by your own words, when you’re speaking to your own people.

Personally, I think Palin/McCain’s going to win. Not because of the dumbing down of the electorate… but because there’s an alien conspiracy.

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Potato peelers put him on Park Avenue “I think that’s the secret of happiness.  Not doing what you like, but liking what you do.” 

Yep! Thanks, aleja, for pointing me to this.

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Check out Nick’s New Beginning countdown clock.

For those who read my posts, and supported, you know what’s going on. Aleja has led the fight to raise over $3000 to help Nick Dupree:

By the end of August, Nick Dupree will enter a rehabilitation hospital, where he can finally begin to receive much-needed services. He can also begin to plan a transition to independent living in New York City, where services are more readily available to people with significant physical disabilities.


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Nick’s Crusade : Project Freedom has been updated.

I’ve already got some email confirmations of friends sending support and sharing the world. Thanks to you all..

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Access Denied

In a discrimination case that is still crawling through the Louisiana court system after seven years, McNeese State University’s president has asserted that it is not a “high priority” for disabled students to access the university’s student union.

The case, which stems from a 2001 accident, was brought by a student who — while in a wheelchair — was injured trying to pry open a bathroom door in the union. The door was not made accessible for disabled people, according to the suit.

I can hear Len already formulating a comment on LJ, even though I’ve not posted it yet. Len, Jen and Aleja have been enlightening me about realities related to disability issues over the past year that I’ve been helping a bit with the Gimp Girl Community. I had just assumed that proper legislation would just make it easier for institutions to use money to accommodate students, not that they’d balk at having to use money in this way. Real life is tough enough, without having institutions taking the stand by trying to tell people what they can and cannot have, when legislation’s in place describing what the needs are and how they should be met. I’m a slow learner.

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“Injustice anywhere is a threat to justice everywhere” — MLK: Medicaid: Why It’s Broken and How To Fix It

My battle with Medicaid was because the federal guidelines only say states have to cover disabled children, so in many of the poorer states, once you turn age 21, tough luck. In my friend Chris’ case, they cut him off and he died.
This week, I’m reading that states are still arbitrarily cutting kids off at 21, with much suffering resulting, and this has prompted a flurry of posts and emails by me. In Texas, they dumped over 300 people off the cliff in the Houston area alone, even those, who, like me, are on life support! Just like my case, advocates are seeking injunctions in court to block these cases from being “terminated.” Houston Press Article: What happens when chronically-ill kids grow up?

The couple of times I’ve looked at Nick’s writing since I first met him on Second Life have resulted in thoughts sticking in my head for a long time… a good thing. Read it.

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Try any CBC URL, and it will take you to http://www.cbc.ca/mobile/ today. Just tested it from France. Ben tried it in Canada, and Aleja tried it from NYC. It is pretty funny. Try even Google caches and viola [we wanted CBC classical], it is borked. I wonder if they’ve noticed. :)

Let me know when it’s fixed, eh?


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Originally published at Lemmingworks. You can comment here or there.

Alejandra sent me this: Parents Fight Over Which Gang Toddler Should Join - Denver News Story - KMGH Denver. It reminds me of the importance of social support for young parents. If we’re not helping, then someone will.

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Originally published at Lemmingworks. You can comment here or there.

Alejandra’s added a set on flicky, Jason - NYC - Mar. ‘08 - a set on Flickr, of me, her, andrew, laura, and a cast of thousands, from when we met up in NYC. And lots of pictures of things like feet and Heinz bottles. Hmmmm… tells me something.

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Originally published at Lemmingworks. You can comment here or there.

GimpGirl Grows Up: Women With Disabilities Rethinking, Redefining, and Reclaiming Community has been accepted for presentation Internet Research Conference 9.0 in Copenhagen this fall. I’m working on this with Jen Cole and Aleja of Gimpgirl.com. And it will, I’m sure, be an interesting presentation. YAY!

Also, my paper “Who’s Getting All the Fun: Locating Constructionism in Science Simulations in Second Life” has been accepted. It is part of a panel that Jeremy’s organizing. Just waiting to hear if “Songchild on the OLPC: Authentic voices co-constructing identity in meshed-networked learning environments” has been accepted, and I’ll have a hat-trick.

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Originally published at Lemmingworks. You can comment here or there.

A just sent me this video, that had come by way of her sister who is in, I think, Iraq. It is a couple dancing, thought one of the dancers has only one leg. It is so smooth and well put together.

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