Meeting & Protest against Autism Speaks

Meeting
The Autistic Self-Advocacy Network (ASAN) - Ohio State/Central Ohio chapter will be meeting on Thursday, October 1st at 5:45pm at the campus Barnes & Noble (1598 N. High St.). We'll be meeting in the coffee shop area. This will be our first meeting of fall quarter, and we're hoping to see some new faces! Among the things we'll be discussing: our upcoming protest of the autism walk, generating more signatures for our petition to President Gee, planning for the year, and proposing a session on autism, employment, and/or education for the Multiple Perspectives conference. OSU students, faculty, staff, and community members are welcome to attend!

Protest against Autism Speaks
Additionally, ASAN will be protesting the Autism Speaks walk for autism on Sunday, October 11 from 8:30am to 12:00pm. We'll be meeting at the corner of Fred Taylor and Borror Drive, right by the 4-H Center, and this is where we'll carry out our protest. We are actively looking for volunteers and fellow protesters. Our protest has been sparked by, among other things, Autism Speaks' recent PSA, titled "I Am Autism," which presents autistic individuals as kidnap victims, burdens, and inhuman. In the video, autism is presented as a soul-stealing entity that ruins marriages, causes bankruptcy, triggers embarrassment, and erodes morality. Please join us (even if only for a short while) as we speak back to Autism Speaks and the discrimination that such a campaign perpetuates.

Please contact us at asan.ohiostate@gmail.com with questions.

Petition to President Gee
Finally, ASAN-OSU has drafted a petition to President Gee, who is co-chairing the walk, asking him to withdraw his support from Autism Speaks. The petition describes Autism Speaks' unrepresentative leadership, its eugenic aims, and its harmful advertising. The petition is pasted at the end of this blog post. We're hoping to gather as many signatures from students, faculty, staff, and community members as possible. If you are an Ohio resident and would be willing to attach your name to the petition, please email us at asan.ohiostate@gmail.com with your name, email (we won't spam you), and position (e.g., student, staff, faculty, parent, Ohio resident, etc.).

Links
Email contact: asan.ohiostate@gmail.com

ASAN-Central Ohio blog: http://asancentralohio.blogspot.com/

Why Autism Speaks Does Not Speak for Us: http://asancentralohio.blogspot.com/2009/08/why-autism-speaks-does-not-speak-for-us.html

ASAN's response to "I Am Autism": http://asancentralohio.blogspot.com/2009/09/autistic-community-condemns-autism.html

Petition
Dear President Gee and the Board of Trustees:

We, the undersigned students, faculty, staff, and community members, urge you to reconsider your support of Autism Speaks. Autism Speaks is an organization that does more damage to the lives of autistic people than good through its unethical advertising, support for eugenic research, and unrepresentative leadership. We here pledge to refrain from supporting Autism Speaks, and we encourage you do to so as well, for the following reasons:

1. Autism Speaks claims to speak for autistic people without a single autistic person on its board of directors or leadership committees. This is far out of line with the mainstream of the disability community, where individuals with disabilities work side by side with family members, professionals, and others to achieve quality of life and equality of opportunity. Moreover, those who do make decisions in Autism Speaks are far removed from the realities of our lives. It is worth noting that Autism Speaks’ highest paid employee, Chief Science Officer Geraldine Dawson, has an annual salary in excess of $600,000, more than the fundraising total of last year’s walk in Columbus.
   
   
2. Many autistic people and their families find Autism Speaks’ advertising to be offensive. Their ads compare a life on the autism spectrum to a car accident, being struck by lightning, a terminal illness, and other fatal situations. Rather than work to decrease stigma and increase respect for autistic people, Autism Speaks’ advertising fosters pity, shame, and fear, suggesting that our very lives are mistakes and burdens.
   
   
3. Autism Speaks’ fundraising goes toward genetic research aimed at developing a prenatal test with potentially eugenic applications. Given the fact that 92% of fetuses that test positive for Down Syndrome are selectively aborted prior to birth, we are concerned by the prospect of a similar result with respect to the autism spectrum. This is an issue of ethics and discrimination, wholly separate from typical abortion politics. We believe that money raised in the name of autistic people should go toward opportunities for quality of life, not toward our elimination. Autism Speaks’ research agenda is overwhelmingly focused on causation and prevention rather than research initiatives that might support quality of life for all autistic people.
   
   
4. As the president of the largest university in the country, your support of Autism Speaks sets precedent for other colleges and universities. We worry that other universities and other university leaders will follow suit and continue support for an organization that seeks to “eradicate,” in the words of Autism Speaks co-founder Suzanne Wright, autism and autistic people. While we applaud your desire to help autistic individuals and their families lead productive and fulfilling lives, supporting Autism Speaks does no such thing.

We recognize that your desire to make Ohio State a center for autism excellence is well intentioned. However, supporting Autism Speaks will not make our university a leader in disability rights or equality of opportunity, but rather a leader in unequal representation, eugenics research, and flagrant ableism. In signing this petition, we announce that we will not participate in the Autism Speaks walk for the aforementioned reasons. We call upon you to heed our concerns and those of many other people with disabilities, family members, professionals, and countless others. Simply put, we call upon you to end your affiliation with Autism Speaks.

Autistic Community Condemns Autism Speaks’ “I am Autism” Campaign

Press Contacts:
Ari Ne’eman
The Autistic Self-Advocacy Network
Phone: 732.763.5530
E-mail: aneeman@autisticadvocacy.org

FOR IMMEDIATE RELEASE
Autistic Community Condemns Autism Speaks’ “I am Autism” Campaign

“We are the true voices of Autism,” say Autistic adults; Campaign spreads stigma, prejudice and inaccurate information; ASAN vows protest of upcoming Autism Speaks fundraisers

Washington, DC (September 23rd, 2009) - The autism community reacted in horror today to Autism Speaks’ new “I am Autism” campaign, presenting Autistic people as kidnap victims and burdens on their family members and communities.

“I am autism. I have no interest in right or wrong. I will plot to rob you of your children and your dreams….And if you’re happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain,” says the “I am Autism” video, released yesterday and created by Academy Award-nominated director Alfonso Cuarón and Grammy-nominated songwriter/producer Billy Mann.

“This is the latest in a series of unethical fundraising strategies adopted by Autism Speaks,” said Ari Ne’eman, an adult on the autism spectrum and President of the Autistic Self Advocacy Network (ASAN), “This type of fear mongering hurts Autistic people, by raising fear and not contributing in the slightest to accurate understanding of the needs of Autistic adults and children.” ASAN’s Columbus, Ohio chapter has already made arrangements to protest Autism Speaks’ upcoming local fundraising walk and other ASAN chapters will be making similar arrangements shortly, said Ne’eman.

In addition to relying on fear and pity mongering to raise funds, the Autism Speaks video repeats frequently referenced claims of higher than average divorce rates amongst parents of Autistic children. However, a 2008 study conducted by HarrisInteractive for Easter Seals in cooperation with the Autism Society of America found divorce rates for parents of Autistic children lower than those for families with no children with disabilities. The video also relies heavily on the idea of rapidly increasing autism rates. Another new study, released the same day as the video, by the British Government’s National Health Service found that autism rates among adults are the same as amongst children, indicating that the popular “epidemic” claim of rapidly increasing autism incidence is likely false.

“This video doesn’t represent me or my child,” said Dana Commandatore, a parent of an Autistic child living in Los Angeles, California. “Whatever the challenges that autism may bring, my son deserves better than being presented as a burden on society. Autism Speaks’ misrepresentation makes my life and the life of my child more difficult.”

“Autism Speaks seems to think that parents' embarrassment at their kids' meltdowns is more important than autistic kids' pain,” writes Sarah, an Autistic blogger at the blog Cat in a Dog’s World, “Autistic people deserve better than what Autism Speaks has to offer.”

The new video is reminiscent of the December 2007 NYU Child Study Center “Ransom Notes” campaign, which consisted of faux ransom notes claiming to be from an anthropomorphized disability which had kidnapped a child. Those ads were withdrawn after two and a half weeks, due to widespread outcry from self-advocates, parents and professionals and the condemnation of twenty-two national disability rights organizations, led by the Autistic Self Advocacy Network. The Ransom Notes controversy was reported on by The Wall Street Journal, The New York Times, Good Morning America, The Washington Post and other major media outlets. ASAN announced plans to work with the cross-disability community on a similar response to Autism Speaks’ campaign.

“The voices of real autistic people, and of families who do not subscribe to the presentation of their family members as something sinister and criminal, clearly do not matter to Autism Speaks,” said Paula Durbin-Westby, an adult on the autism spectrum in Virginia, who serves on the board of the Autistic Self Advocacy Network. “Our community is furious about Autism Speaks’ continued exploitation and will be taking action.”


Selected initial responses to Autism Speaks’ “I am Autism” campaign from bloggers in the Autism community follow:

Club 166 (Parent): http://club166.blogspot.com/2009/09/when-will-they-listen.html

“The above video takes up where the Ransom Campaign ended, and goes on from there. Not content just to dehumanize autistic individuals, the Autism Speaks video goes on to paint a picture of horror using the most vivid imagery it can find-your marriage will fail, you will go broke, you will never be able to function in society at all, etc…

Two years ago the NYU Child Study Center claimed ignorance of the way that autistic (and other disabled individuals) felt. The response at that time was heard throughout the country, even in major national media. I wonder what excuse Autism Speaks can possibly come up with this time.”

Turner and Kowalski (self-advocate): http://turnerandkowalski.wordpress.com/2009/09/23/i-am-autism-speaks/

“I am Autism Speaks
I will steal your voice and make sure you can never speak for yourself.
I will steal your parents’ money and spend it on a residence on Park Avenue.
I will use demeaning language to degrade, pity and marginalize you.
I have declared war on you.”

Emily (Parent): http://daisymayfattypants.blogspot.com/2009/09/what-if-someone-did-this-with-say-downs.html

“This is horrific. I cannot believe that these people thought it was OK to demonize a developmental disorder in this way, behaving as though autism were something separate from the people who have it, like a wart or a blight or a boil that should be burned off or lanced and drained before it infects someone else or destroys your marriage, rather than what it really is, a differential neural construct that is just as much a part of the people who have it as their eye color. Is there any other developmental difference or genetic disorder that could be vilified in this way with an assumption of impunity? Dyslexia? Schizophrenia? Tourette's? Depression? Chromosomal disorders? Doubt it.”

Sarah (Self-advocate): http://autisticcats.blogspot.com/2009/09/i-am-autism-embarrassment-trope.html

“Autism Speaks seems to think that parents' embarrassment at their kids' meltdowns is more important than autistic kids' pain. They're wrong in that, and they're also wrong to suggest that donating money to Autism Speaks and trying to find a "cure" is the only way to solve this problem. Because while Autism Speaks-funded scientists play with genes in their laboratories, real autistic people are living our lives and will continue to suffer serious anxiety in many public places. Instead of writing another check to Autism Speaks, I suggest actually trying to figure out why an individual autistic person may be experiencing these difficulties. And taking steps on both a personal and societal level to ensure that public places are more accommodating of autistic people.

Autistic people deserve better than what Autism Speaks has to offer.”

Self-Advocacy @ Ohio State: Student Involvement Fair

On the afternoon of Monday, September 21st, the Ohio State chapter of the Autistic Self-Advocacy Network (ASAN) worked a table at the student involvement fair, a community event that boasted over 500 student and community organizations. The members of ASAN-OSU distributed informational handouts during the event, including a flyer entitled "Why Autism Speaks Does Not Speak for Us," authored by Meg Evans of ASAN-Southwest Ohio. Members also solicited signatures for a petition against the upcoming Columbus Walk for Autism Speaks and OSU President E. Gordon Gee's continued support of the walk. In keeping with themes of self-advocacy and protest, on display at the ASAN table was a poster with prominent slogans such as nothing about us without us; we're people, not puzzles; and autistic people can speak for themselves. ASAN-OSU also distributed candy in ziploc bags with ASAN labels attached.

ASAN's table display. Two posters. A white poster that reads, in red letters, "ASAN - The Autistic Self-Advocacy Network." A black poster sits slightly below. In blue and red lettering, it reads "nothing about us without us!" Beneath the slogan sit two red arrows pointing in opposite directions. One arrow reads "autistics speak. learn to listen" and the other reads "we're people, not puzzles." A rainbow infinity sign sits between the two arrows. At the bottom sits a label that reads "The Autistic Self-Advocacy Network."

At the event, ASAN-OSU distributed approximately 450 flyers to community members, students, faculty, and staff. The signature tally on the pledge to President Gee has reached 31, not counting ASAN-OSU members, and the chapter anticipates that this number will increase over the next week. Additionally, ASAN-OSU members held many conversations with supporters as well as non-supporters of the neurodiversity movement. For instance, one woman wearing a Walk for Autism shirt, when approached with a flyer, refused to take one and claimed that Autism Speaks needed all available support, implying that ASAN-OSU's efforts are a distraction. Additionally, many women throughout the course of the event -- most of whom were wearing pink Alpha Xi Delta t-shirts -- refused flyers, one even making fun of the ASAN name (claiming that the group misspelled "ASIAN"). Of note is that this particular sorority has chosen autism awareness -- and, more specifically, Autism Speaks -- as its local and national philanthropy project. Several other students, including a number of student athletes, engaged in similar taunts when passing by the ASAN table.

A few autistic individuals, as well as several students with autistic relatives, stopped by the table and expressed relief at ASAN's presence on campus. ASAN-OSU has also begun to develop relationships with other human rights-oriented groups through this event.

In order to continue the efforts made at the involvement fair, ASAN-OSU/Central Ohio has recently begun a new advertising campaign directed toward the Autism Speaks walk. Arrow-shaped flyers bearing slogans such as "Walk if you support eugenics" have been affixed to countless walk recruitment flyers, as can be seen in the attached images. Upcoming events include the group's first fall meeting, which will occur on Thursday, October 1st at 5:45pm at the campus Barnes & Noble. The group will also protest the autism walk on Sunday, October 11 from 8:00am to 12:30pm and is actively looking for volunteers; if you are interested, contact asan.ohiostate@gmail.com for more details. Between now and the walk, the group anticipates distributing flyers and soliciting petition signatures in heavy foot-traffic areas near campus.

A white arrow with blue letters points to a walk flyer. The arrow reads "walk if you support stereotypes" and contains ASAN-OSU's contact info. An orange arrow, pointing in the opposite direction, reads "we're not alarming, nor are we a puzzle."

Finally, a note of thanks: ASAN members in attendance at the involvement fair were Melanie Yergeau, Hillary Spears, Stephanie Ballam, Whitney Brooks, and faculty advisor Cynthia Selfe. Several other ASAN members contributed to the success of the event, creating flyers and other take-aways, and included Jeffrey Strasser, Noranne Cochran, Justin Rooney, Kristin Rohrbeck, and Natalie A. Finally, many other non-OSU ASAN members made significant contributions in terms of promotional materials and advice, including ASAN President Ari Ne'eman, ASAN-Southwest Ohio director Meg Evans, and ASAN-New England director Andrew De Carlo.

Melanie in front of the ASAN table

Whitney, the faculty advisor Cindy Selfe, and Stephanie in front of the ASAN table.

Next Meeting: Thursday, September 10 @ 5:45pm

Our next meeting will be held this Thursday, September 10, at 5:45pm at Barnes & Noble (1598 N. High St.). We will meet in the coffee shop area on the first floor. OSU students, faculty, staff, and community members are welcome to attend!

Our agenda includes (but is not limited to) the following items: generating signatures for our petition against the Autism Speaks walk; setting up a meeting schedule for the school year; discussing employment; finishing a grant application; dividing flyers & advertising tasks for the new school year; and planning for the student involvement fair (petition, flyers, poster, making playdough, setting up, etc.).