Ari Ne'eman Chosen by President Obama for National Council on Disability

We are pleased to announce that ASAN President Ari Ne'eman has been nominated by President Barack Obama for a position on the National Council on Disability.

The White House
Office of the Press Secretary

For Immediate Release
December 16, 2009

President Obama Announces More Key Administration Posts, 12/16/09

WASHINGTON – Today, President Barack Obama announced his intent to nominate the following individuals to key administration posts:

•Marie Collins Johns, Deputy Administrator, Small Business Administration
•Gwendolyn E. Boyd, Member, Board of Trustees of the Barry Goldwater Scholarship and Excellence in Education Foundation
•Jonathan M. Young, Chair, National Council on Disability
•Carol Jean Reynolds, Member, National Council on Disability
•Fernando Torres-Gil, Member, National Council on Disability
•Chester Alonzo Finn, Member, National Council on Disability
•Gary Blumenthal, Member, National Council on Disability
•Sara Gelser, Member, National Council on Disability
•Ari Ne'eman, Member, National Council on Disability
•Dongwoo Joseph "Joe" Pak, Member, National Council on Disability

President Obama said, “I am grateful that these fine individuals have chosen to serve in my administration. They will bring a depth of experience and valued perspective to their roles, and I look forward to working with them in the months and years ahead.”

http://www.whitehouse.gov/the-press-office/president-obama-announces-more-key-administration-posts-121609

Bios of the nominees are available through the above link.

Volunteers Needed to End School Abuse

In a bipartisan effort to protect children from dangerous restraint and seclusion in classrooms, new federal legislation will be introduced tomorrow by U.S. Reps. George Miller (D-CA), who is the chairman of the House Education and Labor Committee, and Cathy McMorris Rodgers (R-WA) who is a member of that committee and is the Vice Chair of the House Republican Conference. Their press conference will be webcast live from the Education and Labor Committee website at http://edlabor.house.gov/ at 11:00 AM EST on Wednesday, December 9, 2009.

As shown in a report by the U.S. Government Accountability Office on the inappropriate use of restraint and seclusion in classrooms, many students, including a disproportionate number of children with disabilities, have been injured and in some cases killed by these harmful practices. The federal government has no existing policies to prevent the misuse of restraint and seclusion in schools, and many states also lack adequate regulation and oversight.

ASAN is currently looking for volunteers to help with our advocacy work supporting the passage of legislation to protect students against school abuse. To volunteer, please write to info@autisticadvocacy.org with the subject line "Restraint and seclusion" in your email.


Update, December 9: The Justice for All Action Network has issued a press release supporting the legislation.

Second update: ASAN President Ari Ne'eman was quoted in an Education Week article on the proposed legislation, stating that it "is the first of its kind, going far beyond previous efforts to protect students with disabilities."

Employment Discrimination Testimony Transcript

Testimony given to the US Equal Employment Opportunity Commission and Department of Justice Civil Rights Division, Town Hall Listening Session on the ADAAA Proposed Regulations, Philadelphia, PA, 10/30/09; Stuart Ishimaru, Acting Chairman of the Equal Employment Opportunity Commission, presiding.


MR. ISHIMARU: Next we have Ari Ne’eman. We look forward to your statement and welcome.

ARI NE’EMAN: Thank you very much and thank you for the chance.

I represent the Autistic Self Advocacy Network, a group of Autistic people speaking for ourselves.

For too long, prior to the passage of the ADA Amendments Act, the approach of addressing discrimination and of viewing the difficulties that those on the autism spectrum face through the context of discrimination rather than merely through the context of impairment or charity was one that was all too often not taken in the autism world. With the passage of the ADA Amendments Act, and the promulgation of regulations implemented with a unique view to building a culture of civil rights that coincides with the growing recognition of the rights of those of us on the autism spectrum, those who desire to speak for themselves and take an active role in how we are viewed in society are trying to address the ways in which the society still poses obstacles.

We're very pleased by the regulations proposed in order to implement the ADA Amendments Act. And we have three broad suggestions in terms of how to improve them for adults and youth on the autism spectrum seeking to find and maintain, and avoid discrimination in the context of, employment.

First, we note that autism was included amongst the list of examples of impairments that will consistently meet the definition of disabilities. We would like to suggest that this be somewhat clarified to broaden the term to autism spectrum disability, rather than just simply autism, seeing as the term autism is commonly understood to refer to five diagnoses in the DSM-IV: Autistic disorder, Asperger syndrome, and others on the autism spectrum. Now, these different diagnoses have somewhat different characteristics, but they all substantially limit communicating, interacting with others and learning. As a matter of fact, in the DSM-V, the next edition, it has been proposed that these diagnoses be combined into a single autism spectrum disorder or autism spectrum disability diagnosis reflecting the fact that for more individuals, the particular autism spectrum disability diagnosis they receive is largely dependent upon what professional they visited or what region of the country they should happen to live in. We believe that clarifying the language to reflect autism spectrum disability will ensure that all autism diagnoses are covered.

Second, we also believe that in respect to the "regarded as" from the symptoms of impairment leading to adverse actions by employers, when this is brought up, that some consideration for the needs of people with invisible disabilities must be addressed in respect to the facts for people with invisible disabilities. One of the greatest difficulties is that our symptoms of impairment are extent to a lesser extent in the general population. We propose that a phrase be added in the section under actions taken based on symptoms of an impairment or based on use of mitigating measures, clarifying that an action taken on the basis of behavioral symptoms also present in the general population also constitutes an action covered under the "regarded as" prong. For example, an individual who is dismissed from a data entry job because he or she does not make eye contact with their supervisor, even if the employer is unaware of the autism spectrum disorder or disability, should still be covered under the "regarded as" prong of this definition.

Third, we also encourage that in respect to section 1630.10, discussing qualification testing and qualification tests, that particular focus be given in the example of a specific example of the ways in which personality tests are administered by many employers. As a matter of fact, a 2003 survey by Management Recruiters International found that 30% of American companies use personality tests, which often act to serve as an obstacle to the full access and the equal consideration in employment and hiring decisions for people with social communication disabilities. As such, we propose the inclusion of an example, to make this section more actionable for those of us with invisible disabilities and for those of us with communication disabilities and focusing on whether or not employees are asked questions as a condition of hiring or relating to social relationships or anxiety in social or other contexts. We feel that this will have an effect on employment discrimination in hiring and promotion for people with invisible disabilities.

Overall, we were extremely pleased by the quality of these regulations. And our community is looking forward to working with the Equal Employment Opportunity Commission and working with the broader civil rights community to help build a culture of civil rights and a culture of ADA enforcement in the autism spectrum disability community and beyond.

Thank you very much for your time and I would be glad to answer any questions.

MR. ISHIMARU: Thank you very much. Very, very helpful. Are there any questions? No? I think you were pretty clear.

MR. ISHIMARU: I actually have one. On the personality tests, do you have a feel of how often they're used and for people with autism spectrum disability issues, are they ... will they always root out people who have the disability or does it happen more often than not?

ARI NE’EMAN: Well, this is something that's a growing concern in the human resources context. And one of the issues is that the use of personality testing is growing significantly, with 30% of American companies utilizing them in one form or another. There's a tremendous amount of diversity in terms of what personality tests are being utilized, the level of science that might back them and there's actually been in the disability context and we know in the context of social communication disabilities, in large part, because of the very issues that led to the passage of the ADA ... very little consideration as to the extent to which these personality tests are focusing on job-related tasks that would be covered by a matter of business necessity. We believe the anecdotal experience of many of our members and those of us on the autism spectrum show that these tests do tend to screen out adults on the autism spectrum. Particularly, because they're being applied in contexts that do not necessarily have those particular skill sets within the essential functions of that job. It's one thing if these tests are being applied in the context of sales force determination. It's another thing to be applied in an engineering context or in a data entry job or in another type of job. So we know that these are relatively widespread and we do know that they tend to, because they are generally focused on the nature of the employee's social interaction, the nature of the employee's private life, the nature of the prospective employee, to screen out many individuals on the autism spectrum and with other social communication disabilities or with other invisible disabilities.

MR. ISHIMARU: Very good. Thank you very much. Very helpful.


ASAN has posted the transcript of this testimony on our main website, and it is also available on the EEOC website. Please feel free to repost it if you so wish.

National Town Hall run by Advancing Futures for Adults with Autism

This article was written by an autistic self-advocate who attended one of the AFAA National Town Hall meetings on November 13, 2009, and describes his impressions of the event.


Nothing about us without us.

This is what I thought when first reading about the National Town Hall put on for Advancing Futures for Adults with Autism: this meeting must have the voices of autistics heard loud and clear, especially those of us who are adults and are struggling to live and survive in today's society. What an opportunity to address a part of our population that has long been overlooked!

Then I found out that the organizational chairs of the entire production were the New York Center for Autism and Autism Speaks.

Nothing about us without us.

These words again resonated inside me as I saw that Autism Speaks was playing a key role in this production, reminding me of the numerous discriminatory and prejudicial actions they have taken against people with autism (like myself) all in the name of so-called advocacy, awareness and research fundraising. Unfortunately I didn't have the numbers to protest the event and make a major impact with a boycott. I decided to register for the Town Hall – not as a way of being complicit – but as a way to gently and smoothly show the problems with Autism Speaks, their actions, their discrimination, and what people with Autism can do and what they really want.

Attending the event alone would not be enough, so I supplied myself with two fliers. One was an article listing ten misconceptions of autism by Alex Plank, a fellow person with autism and founder of the online community Wrongplanet.net. The other was a fact flier produced by ASAN (Autistic Self Advocacy Network), titled, “Why Autism Speaks Does Not Speak For Us,” which had a concise and current reference list along with its facts.

November 13th, Friday: the day of the Town Hall had finally arrived. I walked in the conference center at the satellite location to find a registration table with an Autism Speaks banner taped to the front. I picked up my name tag – they had listed me in the wrong state; I kept walking. The next person I encountered I'd met before, on a board for a resource center for persons with autism that had its space at a university. Unfortunately, this board has dissolved and the resource center closed for good. What's worse is that she is now working for Autism Speaks, and as I walked up to her, she treated me as though I were 4 years old.

“Oh Hi [Mr. E], How are YOU? (Fine) Do you REMEMBER me? (Yes) Let me take you to your table-”

At this point, I calmly went about my way and went to my table, as I became tired of the 'special' treatment.

I found my place at the table and put down my bag, proceeding to pass out my fliers. No one questioned me, nor did they question if I was a part of the staff leading the event – they happily took the fliers as if it was a part of the Town Hall. Every flier I printed up was given out; none were left over.

Once I sat back down, I looked around and watched as the participants (who were waiting for the Town Hall to start) actually read the fliers I handed to them. This may sound insignificant, but to me it made a huge impact – our message was being read! Before the conference started, I was approached by a few people who stated that they appreciated receiving the fliers, and thanked me for having the courage to bring them to the Town Hall. Only one person spoke in disapproval.

10:20 am: the National Town Hall started. A giant video screen beamed in a live feed from the University of Chicago where the actual Town Hall was centrally held. I was at one of the satellite locations, of which there were 16 total. A few speakers appeared on the screen, including two from Autism Speaks: Lisa Goring, Director of Family Services, and Peter H. Bell, Executive Vice President. Director Goring's speech focused on the topic at hand, which was advancing futures for adults with autism. Executive Vice President Bell, however, decided to tell a personal story about his family's experience with autism and how he and his wife had prepared for having a baby. I found this unnecessary and off track, and so did others, as shown in the faces and reactions of the crowds both at the Town Hall and at the satellite sites.

The program was not run by Autism Speaks (although funded and organized by it) but by AmericaSpeaks, a nonpartisan organization based in Washington, D.C. that uses technology for discussion of public issues. Daniel Clark, an Associate of AmericaSpeaks, came on stage and laid out (vaguely) how the Town Hall would work, and introduced the “Theme Team,” a group of people with laptops set up to consolidate the various data received from around the various sites and “create common themes.”

There were four different points to be voted on, but each table in each site was encouraged to discuss the issue – and at our table, we all agreed that each point's list of strategies needed some modifying. This, of course, would not happen, and was not the point of the Town Hall meeting. The longer it went on, I started to think that this was merely a showcase for Autism Speaks' national agenda for adults with autism, and all who attended were a test group who would 'streamline' the agenda strategies down for them.

I was only half right.

Before each point's list of strategies was a sentence that stated its five-year vision. The central site in Chicago, seemingly desperate to show a person with autism 'participating,' allowed an autistic to read that sentence. Overall, the event had extremely little participation by anyone on the autism spectrum. They did have a 'special' segment for a person with autism who could draw quickly and with proficiency: they asked him to draw an illustration that interpreted what the Town Hall had accomplished that day. Did we get to see any of his work? You can guess the answer: No. This token participation had the feel of a minstrel show put on by persons in the present day: tasteless, ignorant, horribly discriminatory, and wrong in every way.

The Town Hall didn't actually fit a Town Hall-type of meeting; it was more of a discuss-and-vote type of meeting. This event wasn't really devoted to developing or modifying current ideas, but rather reinforcing the current proposals and strategies that were shown to us that day. Change or direct input incorporating original and/or unique ideas was not accepted due to the fact that all content was filtered & watered down by the “Theme Team” into something deemed more “acceptable.”

Now that the Town Hall is over, what did the participants (majority 45-64 year-old white relatives of or program/service providers to a person with autism, with an income of at least $60,000/year and up) actually decide, and what will they do next?

The AFAA (Advancing Futures for Adults with Autism) wants participants to become a “fan” of them on facebook, share resources and stories on their website, spread information about AFAA through word of mouth, and participate in the discussion forums on the site (afaa-us.org). In 2010, AFAA will host an Autism Congress, which I'm sure will represent people who speak for people with autism.

As I left the conference room, nevertheless feeling empowered that people actually read the fliers I passed out, Executive Vice President Peter Bell from Autism Speaks appeared on the screen one last time, demanding 90 seconds from the audience as they began to pick up and leave. I slowly turned around to hear an admonishment cloaked in praise:

“...and for those of you who have autism who attended today, thank you.”

I stood there, shocked at the sheer hypocrisy of the statement compared with the entirety of the Town Hall. Like many autistics, I would have traded all the thank yous in the universe for equal representation and the ability to serve in positions of leadership for groups that claim to speak on our behalf.

Giving out those fliers was my first step towards getting our own voice heard.

NYC Protest on November 17

For those who will be in the New York City area next week, please consider taking part in ASAN's protest rally against Autism Speaks' exclusionary, stigmatizing, and exploitative practices. Details are set forth in the following announcement by ASAN President Ari Ne'eman:


We'll be gathering at Seventh Avenue and 57th Street, 154 West 57th Street in New York City from 6 PM to 8 PM this coming Tuesday, November 17th, to hold up signs and hand out flyers to Autism Speaks sponsors going in to their New York City concert with Bruce Springsteen and Jerry Seinfeld. Come join us! Please RSVP to aneeman@autisticadvocacy.org or go to the facebook event page here: http://www.facebook.com/event.php?invites&eid=205191180125

Please distribute to your friends, contacts and listservs!

WHY ARE WE DOING THIS?

1. Autism Speaks talks about us without us. Not a single Autistic person is on Autism Speaks' Board of Directors or in their leadership. Autism Speaks is one of an increasingly few number of major disability advocacy organizations that refuse to include any individual with the disability they purport to serve on their board of directors or at any point in their leadership and decision-making processes. In large part this is due to Autism Speaks' public relations strategy of presenting Autistic people as silent burdens on society rather than human beings with thoughts, feelings and opinions.

2. They use fear and stigma to try and raise money off the backs of our people. Autism Speaks uses damaging and offensive fundraising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum. Autism Speaks' advertising claims that Autistic people are stolen from our own bodies. Its television Public Service Announcements compare having a child on the autism spectrum to having a child caught in a fatal car accident or struck by lightning. In fact, the idea of autism as a fate worse than death is a frequent theme in their fundraising and awareness efforts, going back to their "Autism Every Day" film in 2005. Indeed, throughout Autism Speaks' fundraising is a consistent and unfortunate theme of fear, pity and prejudice, presenting Autistic adults and children not as full human beings but as burdens on society that must be eliminated as soon as possible.

3. Very little money donated to Autism Speaks goes toward helping Autistic people and families: According to their 2008 annual report, only 4% of Autism Speaks' budget goes towards the "Family Service" grants that are the organization's means of funding services. Given the huge sums of money Autism Speaks raises from local communities as compared to the miniscule sums it gives back, it is not an exaggeration to say that Autism Speaks is a tremendous drain on the ability of communities to fund autism service-provision and education initiatives. Furthermore, while the bulk of Autism Speaks' budget (65%) goes toward genetic and biomedical research, only a small minority of Autism Speaks' research budget goes towards research oriented around improving services, supports, treatments and educational methodologies, with most funding going towards basic research oriented around causation and genetic research, including the prospect of prenatal testing. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world, with annual salaries as high as $600,000 a year.

Link to our Joint Letter Against Autism Speaks, signed by over 60 Disability Rights Groups: http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=61


Update: A news report on the protest, along with a photo slideshow, was published November 19th in the Long Island Autism Examiner.

Here is a video of an Autistic self-advocate explaining the situation to Jerry Seinfeld (first posted by Socrates at The New Republic):

Scholarships Available in Ohio

The following announcement was forwarded to us by Barb Yavorcik of the Autism Society of Ohio -- thanks!

Stipends and scholarships available for STEM students with disabilities

Ohio's STEM Ability Alliance is recruiting students with disabilities who are majoring in science, technology, engineering and mathematics (STEM) degrees to participate in student learning communities, mentoring, ability advising programs and internship opportunities. Students who are enrolled in OSAA programs are also eligible to apply and compete for Choose Ohio First Scholarships, available Winter Quarter, 2010. Apply now by completing an application at http://nisonger.osu.edu/osaa/. Contact: osaa@osu.edu

Why Autism Speaks Does Not Speak for Us

The article below is an updated version of a previous post on the ASAN Central Ohio blog. It may be copied for use on protest flyers and other materials.


Autism Speaks and the organizations that merged into it, including the National Alliance for Autism Research, have provided many grants to fund genetic studies and other autism-related research. In 2005, grant recipient Dr. Joseph Buxbaum predicted a prenatal test within 10 years.[1] Autism Speaks' co-founder Suzanne Wright made the organization's eugenic aims equally plain, to "eradicate autism for the sake of future generations."[2] There is a page on Autism Speaks' website supporting the efforts of James Watson and others "to identify autism susceptibility genes."[3] Watson resigned in disgrace from his position as the Chancellor of Cold Spring Harbor Laboratory after making grossly racist remarks,[4] and he has long advocated genetically enhancing children and eugenically exterminating people with cognitive disabilities, which he characterizes as "curing stupidity."[5]

Autism Speaks created a video in 2006 entitled Autism Every Day, which the producer admitted was staged to show negative images.[6] In one horrific scene, a mother described her thoughts of murdering her autistic daughter while the child was actually in the room.[7] Soon afterward, two board members of Autism Speaks said in a magazine interview that they sometimes hoped their autistic son would drown in their backyard pond.[8] Television ads by Autism Speaks have compared the odds of a child being autistic to the odds of a child being struck by lightning, [9] or killed in a car wreck, implying none too subtly that a child might as well be dead as autistic.

Two prominent figures at Autism Speaks, communications executive Alison Tepper Singer [10] and scientific advisor Dr. Eric London,[11] resigned in 2009 because they objected to the organization's complicity in perpetuating the groundless urban legend about vaccines and autism, which has led to reduced vaccination rates and tragic deaths of young children from vaccine-preventable diseases.[12] Dr. London warned bluntly in his resignation letter that "[i]f Autism Speaks' misguided stance continues, there will be more deaths…"[13]

Although Autism Speaks claims to speak for autistic people, it does not have—and never has had—even one autistic person on its board of directors or in its leadership. 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. Autism Speaks' exclusionary attitude toward people with disabilities is clearly shown in a video entitled Neighbors,[14] which suggests that autistic children will have no friends unless they are taught to suppress their autistic mannerisms by means of behavioral therapy. The underlying message is that people with disabilities cannot be accepted as they are.

Over 60 disability rights organizations have signed a joint letter[15] condemning Autism Speaks' exclusionary practices, use of fear and stereotypes as fundraising tactics, and draining funds from families and communities as shown by Autism Speaks' 2008 annual report,[16] which makes clear that only four percent of the organization's funds go toward providing services to families. Autism Speaks is notorious for high executive salaries.[17] The joint letter expressed community outrage following Autism Speaks' release of a video called I Am Autism,[18] which narrates in a spooky horror-movie tone, "I am autism... I know where you live... if you’re happily married, I will make sure that your marriage fails... I will bankrupt you... I will plot to rob you of your children and your dreams..." and numerous other offensive statements characterizing autistic people as terrible burdens and stolen children.

References:
[1] MSNBC, Feb. 23, 2005; http://www.msnbc.msn.com/id/7013251
[2] Parade Magazine, Jan. 27, 2008; http://www.parade.com//articles/editions/2008/edition_01-27-2008/Autism_Changes_Everything
[3] http://www.autismspeaks.org/inthenews/wrights_cold_spring_harbor.php
[4] http://www.independent.co.uk/news/science/fury-at-dna-pioneers-theory-africans-are-less-intelligent-than-westerners-394898.html
[5] Sun-Herald, March 2, 2003; http://www.smh.com.au/articles/2003/03/01/1046407801233.html
[6] WireTap Magazine, July 11, 2006; http://www.alternet.org/wiretap/38631
[7] http://www.youtube.com/watch?v=C7NTfZzS9b8
[8] Town & Country Magazine, August 2006; http://www.autismspeaks.org/docs/Town_and_Country.pdf
[9] http://www.metacafe.com/watch/1086177/autism_awareness_lightning
[10] Newsweek, Jan. 19, 2009; http://www.newsweek.com/id/179998
[11] Science, July 10, 2009; http://www.sciencemag.org/cgi/content/full/325/5937/135-a?ijkey=vWdUsXAiJkdCE&keytype=ref&siteid=sci
[12] Discover Magazine, June 2009; http://discovermagazine.com/2009/jun/06-why-does-vaccine-autism-controversy-live-on
[13] http://www.autismsciencefoundation.org/ericlondon.html
[14] http://www.youtube.com/watch?v=7rVX_nSLFtg&feature=channel_page
[15] http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=61
[16] http://www.autismspeaks.org/docs/Autism_Speaks_Annual_Report_2008.pdf
[17] http://www.disabilityscoop.com/2009/09/10/autism-speaks-pay/4893/
[18] http://www.time.com/time/health/article/0,8599,1935959,00.html

Autism Speaks in Columbus: Let Them Eat Cure

By Meg Evans, ASAN Southwest Ohio Chapter Director.

ASAN Central Ohio/Ohio State University protested an Autism Speaks walk on the OSU campus on Sunday, October 11th, along with other disability rights advocates objecting to Autism Speaks' lack of self-advocate representation, advertising campaigns that promote fear and stereotypes, and taking funds out of local communities for cure and prevention research while providing very few services. There is a YouTube video of the protest, and more details and photos can be found on the ASAN Central Ohio blog.

I came from the Dayton area to take part in the protest, which was a drive that took me a little more than an hour, and I found several ASAN members and supporters already on the site when I arrived. The protest site was located across the street from the entrance to the parking area for the walk participants, and our group was very visible to people arriving in cars for the event, many of whom looked surprised to see us. Some walkers who arrived on foot stopped to talk with our group about our concerns and to look at our flyers. After the walk began, several people approached us to ask why we were protesting. When I explained to one walker that almost all of the donations raised would be spent by the national Autism Speaks organization on advertising and research, with only four percent being returned to communities for family services, she started nodding and told me that she had been wondering where all the money went.



Image: Protesters hand out flyers at Autism Speaks walk


In light of the widespread lack of availability of services and supports for Autistic people and our families, not only in Ohio but also in other states and throughout the world, we were not expecting anyone to dispute the need for more funding for services. At the end of the walk, however, one Autism Speaks supporter approached our group and argued that it was all right for Autism Speaks to take money out of local communities because Autistic people and our families really didn't need the money anyway. In the tone of a modern-day Marie Antoinette declaring that peasants who had no bread could eat cake, he said that as a parent he had no problem with large amounts of money being spent on cure research because Social Security disability benefits and other programs were available and because "I have a good job." Evidently it had not occurred to him that others might not be as fortunate as his family.

The irony in such an argument struck me as quite glaring indeed, coming so soon after Autism Speaks' release of the widely denounced I Am Autism video, in which a scary voice purporting to represent autism says, "Your money will fall into my hands, and I will bankrupt you for my own self-gain."

Protest in Columbus Against Autism Speaks

ASAN Central Ohio/Ohio State University will be protesting an Autism Speaks walk on Sunday. This information was crossposted from the ASAN Central Ohio blog.

Please join us as we protest the Autism Speaks walk for autism this Sunday, October 11 from 8:00am to 12:00pm. We'll be meeting at the corner of Fred Taylor Drive 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.

Campus map & driving directions: http://www.osu.edu/map/building.php?area=&building=191

Note on parking: The OSU Event Parking Coordinator is advising ASAN to park behind the 4H Center building in their parking lot. There are about 55-60 spaces available. Fred Taylor Drive (the road in front of the parking lot) will be blocked off at 10 a.m. to prepare for the walk, so everyone will need to be there before that time if they choose to park there. Getting dropped off near by or walking from main campus are the other options for coming later than 10am. Thanks!

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

Letter to the Sponsors, Donors and Supporters of Autism Speaks

This morning, the following letter from over 60 disability rights organizations was sent to numerous national sponsors of Autism Speaks. Individual signatories can show their support by signing the petition at http://www.ipetitions.com/petition/AutismSpeaks. Please feel free to distribute this to your networks.


To the Sponsors, Donors and Supporters of Autism Speaks:

We, the undersigned organizations representing self advocates, parents, professionals and allies in the Autism, Autistic and Disability Communities, are writing to you to express our concern about the recent actions of Autism Speaks. Our work is about helping empower and support people with disabilities of all kinds, including adults and youth on the autism spectrum, and we recognize that there are a wide variety of means towards accomplishing this goal. Yet, Autism Speaks’ recent choice to use fear, stigma, misinformation and prejudice against Autistic people as a fundraising tool does real damage to people with disabilities everywhere. The most recent example of this lack of ethics can be found in Autism Speaks’ new “I am Autism” campaign which states, “I am autism...I know where you live...I work faster than pediatric AIDS, cancer and diabetes combined. 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...I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain...I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness."

Not only does this campaign rely on offensive stereotypes and inaccurate information (research indicates that parents of Autistic children are not more likely to divorce than parents of non-Autistic children), but it also does real damage to the cause of disability rights. By choosing to portray Autistic people as husks of real people, stolen out of our own bodies, Autism Speaks reinforces stereotypes and prejudice against people with disabilities that have existed for centuries and have been the source of pain, segregation and violence.

We are calling on you to end your support for Autism Speaks and to find new ways to show your support for Autistic people and others with disabilities. As the result of a pattern of unethical behavior and irresponsible governance, outlined below, we believe that Autism Speaks as an organization no longer deserves your time, energy, money and support.

Autism Speaks uses damaging and offensive fundraising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum: Autism Speaks’ unethical fundraising tactics are not limited to the new “I am Autism” video. Its television Public Service Announcements compare having a child on the autism spectrum to having a child caught in a fatal car accident or struck by lightning. In fact, the idea of autism as a fate worse than death is a frequent theme in their fundraising and awareness efforts, going back to their “Autism Every Day” film in 2005. Indeed, throughout Autism Speaks’ fundraising is a consistent and unfortunate theme of fear, pity and prejudice, presenting Autistic adults and children not as full human beings but as burdens on society that must be eliminated as soon as possible.

Very little money donated to Autism Speaks goes toward helping Autistic people and families: According to their 2008 annual report, only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services. Given the huge sums of money Autism Speaks raises from local communities as compared to the miniscule sums it gives back, it is not an exaggeration to say that Autism Speaks is a tremendous drain on the ability of communities to fund autism service-provision and education initiatives Furthermore, while the bulk of Autism Speaks’ budget (65%) goes toward genetic and biomedical research, only a small minority of Autism Speaks’ research budget goes towards research oriented around improving services, supports, treatments and educational methodologies, with most funding going towards basic research oriented around causation and genetic research, including the prospect of prenatal testing. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world, with annual salaries as high as $600,000 a year.

Autism Speaks excludes the people it pretends to represent: Autism Speaks is one of an increasingly few number of major disability advocacy organizations that refuse to include any individual with the disability they purport to serve on their board of directors or at any point in their leadership and decision-making processes. In large part due to Autism Speaks’ public relations strategy of presenting Autistic people as silent burdens on society rather than human beings with thoughts, feelings and opinions, Autism Speaks’ governance policies are deeply unrepresentative and out of step with the mainstream of the disability non-profit community.

Contrary to the “I am Autism” video, which equates autism with AIDS and Cancer, autism is not a terminal disease. It is a disability, one that comes with significant challenges in a wide variety of realms. Yet the answer to those challenges is not to create a world in which people are afraid of people on the autism spectrum. The answer is not to create a world in which the word autism is met with terror, hatred and prejudice. It is to work to create a society that recognizes the civil rights of Autistic people and others with disabilities. It is to work to create a world in which people with disabilities can benefit from the supports, the services and the educational tools necessary to empower them to be full citizens in society.

We are Autism’s true voice – Autistic people and those with other disabilities ourselves, and our allies, family members, friends and supporters. Autism Speaks does not speak for us. We are not stolen – we are right here. Our lives may be difficult – but they are worth living. Autism Speaks Does Not Speak For Us and we will not work with an organization that relies on damaging and offensive stereotypes to advance an agenda out of step with those they purport to represent. We call upon you to recognize this and find better avenues for your admirable desire to support Autistic people and our families. We call upon you to end your support for Autism Speaks.

National and International Organizations:



The Autistic Self Advocacy Network

Self-Advocates Becoming Empowered (SABE)

The National Council on Independent Living (NCIL)

ADAPT

TASH

The Arc of the United States

Disability Rights and Education Defense Fund (DREDF)

The National Youth Leadership Network (NYLN)

Autism Network International (ANI)

The Autism National Committee

Little People of America (LPA)

Not Dead Yet

The Bazelon Center for Mental Health Law

National Coalition for Disability Rights/ADA Watch

The Autistic Spectrum Partnership In Research and Education (AASPIRE)

Mothers From Hell 2

The Center for Self-Determination

Disability Rights Advocates

Kids As Self-Advocates (KASA)

Service Dog Central

MHONA International

The National Empowerment Center

Disabled Youth Collective (DYP)

The National Coalition of Mental Health Consumer/Survivor Organizations

Feminist Response in Disability Activism (FRIDA)

The ICORS Asperger’s Listserv



International:



Autistic Self-Advocacy Network-Australia

Autism Rights Group Highland (in Scotland, United Kingdom)

The Autistic Community of Israel

Autreach IT in the United Kingdom

The Southwest Autistic Rights Movement (SWARM) in the United Kingdom

The London Autistic Rights Movement (LARM)

The Aspergers Network in the United Kingdom



Local, State, and Regional Organizations:



ADAPT-Montana

The Center for Disability Rights in Rochester, NY

The Regional Center for Independent Living in Rochester, NY

The Michigan Disability Rights Coalition

The Institute for Disability Access in Austin, Texas

The Maryland Coalition for Inclusive Education

The Paraquad Center for Independent Living in St. Louis, Missouri

The Lonesome Doves in Pennsylvania

TASH-New England

Together Enhancing Autism Awareness in Mississippi (TEAAM)

Wesleyan Students for Disability Rights at Wesleyan University in Connecticut

Tangram in Indianapolis, Indiana

The Disability Activists Work Group (DAWG) in Oregon

APSE-Oklahoma

North Carolina Disability Action Network

Access Living of Metropolitan Chicago in Chicago, Illinois

Topeka Independent Living Resource Center in Topeka, Kansas

Disabilityworks in Chicago, Illinois

Ardinger Consultants & Associates in Maryland

Statewide Parent Advocacy Network of New Jersey

Wisconsin Family Assistance Center for Education, Training and Support

Aspergers Young Adults of North Alabama (AYANA)

Access to Independence of Cortland County, Cortland, New York

Youth Power, New York

The New York Association on Independent Living

Self-Advocates As Leaders (SAAL) in Oregon

Green Country Independent Living Resource Center

Elementary Inclusive Education Program at Teachers College, Columbia University

Beyond Compliance Coordinating Committee at Syracuse University

Green Mountain Self-Advocates in Vermont

Advance Youth Leadership Power in Chicago, Illinois



--
Ari Ne'eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530

Disability Community Condemns Autism Speaks

For Immediate Release
Contact: Ari Ne’eman, President

Wednesday, October 7th, 2009
The Autistic Self Advocacy Network
Phone: 732.763.5530
E-mail: aneeman@autisticadvocacy.org or info@autisticadvocacy.org

Over 60 organizations condemn lack of representation, exploitative and unethical practices by autism organization

Washington, DC – More than 60 national, international, and local disability rights organizations have signed onto a letter condemning the organization Autism Speaks for exploiting those it purports to help. The letter will be released on Wednesday, October 7 by the Autistic Self Advocacy Network (ASAN), the leading advocacy organization run by and for Autistic youth and adults speaking for themselves. The letter’s signatories include the Arc of the United States, TASH, the Bazelon Center for Mental Health Law and the National Council on Independent Living, and it calls on Autism Speaks' donors, sponsors, and supporters—including Toys ‘R Us, Home Depot, Fox Sports, and Lindt Chocolates—to end their support for the organization.

The joint letter highlights a pattern of behavior on the part of Autism Speaks beyond any particular instance, but it was instigated following Autism Speaks’ most recent fundraising video, entitled, “I am Autism”. The disability community reacted in horror to the “I am Autism” campaign, which presents Autistic people as kidnap victims and burdens on their families and local communities.

ASAN held a protest in Portland, Oregon on September 26 that received widespread local press coverage, including segments on the news broadcasts on two local television stations, KPTV-12 (Fox) and KOIN-6 (CBS). Additional protests are being organized for Sunday, October 11 in Columbus, Ohio, and for Sunday, October 18 in Boston, Massachusetts. ASAN is also organizing a large protest at an Autism Speaks-sponsored concert at Carnegie Hall in New York City on Tuesday, November 17. Singer Bruce Springsteen and comedian Jerry Seinfeld are headlining the concert.

“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,” proclaims the spooky announcer on Autism Speaks’ “I Am Autism” video. Produced by Academy Award-nominated film director Alfonso Cuarón and Grammy award-nominated songwriter/producer Billy Mann, the video premiered at the United Nations World Focus on Autism Conference in front of a collection of dignitaries and First Ladies and was subsequently released online on September 22.

Since then, Autism Speaks has attempted to distance itself from the video, taking it down from its website while continuing to distribute it via YouTube (http://www.youtube.com/watch?v=HDdcDlQVYtM&feature=related). The joint letter highlights three areas of unethical and exploitative behavior on the part of Autism Speaks:
a) Its damaging and offensive fundraising tactics, which frequently equate being autistic to a fate worse than death
b) The low percentage of money donated to Autism Speaks that goes towards services or support for families and individuals, particularly in light of its high executive salaries
c) The lack of representation of Autistic people themselves in Autism Speaks’ Board of Directors or leadership

“This joint letter sends a clear message to the corporate and philanthropy world that Autism Speaks does not speak for Autistic people or our families,” said Ari Ne’eman, an adult on the autism spectrum and President of ASAN. “The type of fear-mongering and exploitation Autism Speaks engages in hurts Autistic people by raising fear and not contributing in the slightest to accurate understanding of the needs of Autistic adults and children.”

In addition to relying on arousing fear and pity to raise funds, Autism Speaks’ video repeats frequently referenced claims of higher than average divorce rates among parents of Autistic children. A study conducted in 2008 by Harris Interactive 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 by the British Government’s National Health Service, which was released the same day as the video, found that the autism rate among adults (one percent of the population) is the same as the rate among children. This provides evidence 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 who lives 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,” wrote Sarah, an Autistic blogger at the blog Cat in a Dog’s World. She added, “Autistic people deserve better than what Autism Speaks has to offer.”

The new video is reminiscent of the December 2007 New York University Child Study Center’s “Ransom Notes” campaign that used fake ransom notes claiming to be from an anthropomorphized disability that had kidnapped a child. After widespread outcry from self-advocates, parents, and professionals and the condemnation of 22 national disability rights organizations, led by ASAN, those ads were withdrawn in just two and half weeks. The Ransom Notes controversy was covered by The Wall Street Journal, The New York Times, Good Morning America, The Washington Post, and other major media outlets. ASAN is working 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 Directors of the Autistic Self Advocacy Network. “Our community is furious about Autism Speaks’ continued exploitation, and we are taking action.”


About ASAN
The Autistic Self Advocacy Network (ASAN) is an inclusive international non-profit organization run by and for autistic people. ASAN seeks to advance the vision of the disability rights movement in the world of autism. Drawing on the principles of the cross-disability community on issues such as inclusive education, community living supports, and others, ASAN focuses on organizing the community of Autistic adults and youth to have our voices heard in the national conversation about us. In addition, ASAN works to advance the idea of neurological diversity by furthering the view that the goal of autism advocacy should not be to create a world without Autistic people. Instead, it should be to create a world in which Autistic people enjoy the same access, rights, and opportunities as all other citizens. For more information, visit http://www.autisticadvocacy.org/

Ari Ne'eman Receives Award

On Wednesday at UCP's Life Without Limits Economic Forum, which addressed the economic potential of the disability community, ASAN President Ari Ne'eman received the Expanding Horizons Award for his work advocating for rights and dignity for persons on the autism spectrum.

Topics discussed by forum participants included educating business leaders about the disability consumer market, healthcare innovations that benefit people with disabilities, and open sourced development of new accessible technologies.

Taking a Stand for Justice

Bob Williams, former Commissioner of the Administration on Developmental Disabilities, U.S. Department of Health and Human Services, has written an open letter condemning Autism Speaks' hateful video "I Am Autism" and urging Bruce Springsteen to end his support for Autism Speaks and to contact the Autistic Self Advocacy Network to learn more about how to be an ally to Autistic people. The letter as shown below has been excerpted from an original longer version.


An Open Letter to the Boss:


Dear Bruce:

I am writing to strongly urge you not to perform at the Autism Speaks benefit concert in November and that you withdraw your offer to do so in protest over its horrendous video, “I Am Autism.” Watching it left me and others physically ill and deeply outraged much as a hard core porn video or one filled with racial, homophobic or other bigoted images and tirades would do. Under the supposed guise of promotion a cure of all conditions along the Autism Spectrum, the video strips children and adults on the spectrum naked of their humanity – sowing the worse of stereotypes, fears and low expectations. The message it senselessly projects is one of complete dread and utter disdain – not just of the disability but of those with it as well.

Cuarón and Mann may be masters of their craft, furthermore, they and Autism Speaks are certainly protected by the First Amendment in espousing whatever agenda they choose by whatever means they may choose. As you well know, free speech is a two way street, however. Others of us, therefore, have the same fundamental right and, yes, obligation to denounce the message that autistic people are devoid of the ability to connect – the trait that defines all of us as human.

Increasingly, we are learning just how much this theory once regarded as immutable fact is actually chockfull of holes and based in part or whole on faulty and the most discriminatory of assumptions (see, for example, “The Truth About Autism: Scientists Reconsider What They Think They Know”, Wired Magazine, 02.25.08). We are also just beginning to glimpse the scope and magnitude of the damage and injustices done over the past century or more because such flawed half “scientific” dogmas. So, the question must be asked: What possible good is done by perpetuating them?

Bruce, I have been a fan of yours since the days of Greetings from Asbury Park. As a high school student with significant cerebral palsy in the 70’s I felt alienated, castigated and incommunicado with the world much of the time. Your music became a major force in my life. In your lyrics and the sweet riffs of Clarence, I found my own voice loud, proud and strong. I recognized that far from being a weakness or the problem that my disability, my supposed speechlessness and otherness are among my greatest strengths – essential to what makes me and those like me uniquely and uncategorically human. This is something those so quick to dismiss and denigrate seem unwilling to accept. In your artistry and advocacy for human rights, one line above all others strikes me as central to your message – Walk Tall or Don’t Walk at All. Autistic people are urging you to Walk Tall with them. I urge you to do the same. Please contact Ari Ne'eman, the Founding President of the Autistic Self Advocacy Network to find out how you can join your voice in harmony with theirs to take a stand for justice. Ari can be emailed at aneeman@autisticadvocacy.org

Thank you.

Bob Williams, former Commissioner
Administration on Developmental Disabilities,
U.S. Department of Health and Human Services

Joint Letter Opposing Autism Speaks

The Autistic Self Advocacy Network and other organizations representing the Cross-Disability Community are distributing this joint letter to the sponsors, donors and supporters of Autism Speaks following the organization's latest offensive and damaging Public Service Announcement, "I am Autism". If you are an organization that would like to sign on to the letter, please e-mail ASAN at info@autisticadvocacy.org before Close of Business Tuesday, October 6th, 2009. If you are an individual who would like to join ASAN's upcoming protests of Autism Speaks in Ohio, New England, New York City and elsewhere across the country please e-mail ASAN at info@autisticadvocacy.org Thank you for your support and please feel free to distribute for additional signatories.

To the Sponsors, Donors and Supporters of Autism Speaks:

We, the undersigned organizations representing self advocates, parents, professionals and allies in the Autism, Autistic and Disability Communities, are writing to you to express our concern about the recent actions of Autism Speaks. Our work is about helping empower and support people with disabilities of all kinds, including adults and youth on the autism spectrum, and we recognize that there are a wide variety of means towards accomplishing this goal. Yet, Autism Speaks’ recent choice to use fear, stigma, misinformation and prejudice against Autistic people as a fundraising tool does real damage to people with disabilities everywhere. The most recent example of this lack of ethics can be found in Autism Speaks’ new “I am Autism” campaign which states, “I am autism...I know where you live...I work faster than pediatric AIDS, cancer and diabetes combined. 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...I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain...I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness."

Not only does this campaign rely on offensive stereotypes and inaccurate information (research indicates that parents of Autistic children are not more likely to divorce than parents of non-Autistic children), but it also does real damage to the cause of disability rights. By choosing to portray Autistic people as husks of real people, stolen out of our own bodies, Autism Speaks reinforces stereotypes and prejudice against people with disabilities that have existed for centuries and have been the source of pain, segregation and violence.

We are calling on you to end your support for Autism Speaks and to find new ways to show your support for Autistic people and others with disabilities. As the result of a pattern of unethical behavior and irresponsible governance, outlined below, we believe that Autism Speaks as an organization no longer deserves your time, energy, money and support.

Autism Speaks uses damaging and offensive fundraising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum: Autism Speaks’ unethical fundraising tactics are not limited to the new “I am Autism” video. Its television Public Service Announcements compare having a child on the autism spectrum to having a child caught in a fatal car accident or struck by lightning. In fact, the idea of autism as a fate worse than death is a frequent theme in their fundraising and awareness efforts, going back to their “Autism Every Day” film in 2005. Indeed, throughout Autism Speaks’ fundraising is a consistent and unfortunate theme of fear, pity and prejudice, presenting Autistic adults and children not as full human beings but as burdens on society that must be eliminated as soon as possible.

Very little money donated to Autism Speaks goes toward helping Autistic people and families: According to their 2008 annual report, only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services. Given the huge sums of money Autism Speaks raises from local communities as compared to the miniscule sums it gives back, it is not an exaggeration to say that Autism Speaks is a tremendous drain on the ability of communities to fund autism service-provision and education initiatives Furthermore, while the bulk of Autism Speaks’ budget (65%) goes toward genetic and biomedical research, only a small minority of Autism Speaks’ research budget goes towards research oriented around improving services, supports, treatments and educational methodologies, with most funding going towards basic research oriented around causation and genetic research, including the prospect of prenatal testing. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world, with annual salaries as high as $600,000 a year.

Autism Speaks excludes the people it pretends to represent: Autism Speaks is one of an increasingly few number of major disability advocacy organizations that refuse to include any individual with the disability they purport to serve on their board of directors or at any point in their leadership and decision-making processes. In large part due to Autism Speaks’ public relations strategy of presenting Autistic people as silent burdens on society rather than human beings with thoughts, feelings and opinions, Autism Speaks’ governance policies are deeply unrepresentative and out of step with the mainstream of the disability non-profit community.

Contrary to the “I am Autism” video, which equates autism with AIDS and Cancer, autism is not a terminal disease. It is a disability, one that comes with significant challenges in a wide variety of realms. Yet the answer to those challenges is not to create a world in which people are afraid of people on the autism spectrum. The answer is not to create a world in which the word autism is met with terror, hatred and prejudice. It is to work to create a society that recognizes the civil rights of Autistic people and others with disabilities. It is to work to create a world in which people with disabilities can benefit from the supports, the services and the educational tools necessary to empower them to be full citizens in society.

We are Autism’s true voice – Autistic people and those with other disabilities ourselves, and our allies, family members, friends and supporters. Autism Speaks does not speak for us. We are not stolen – we are right here. Our lives may be difficult – but they are worth living. Autism Speaks Does Not Speak For Us and we will not work with an organization that relies on damaging and offensive stereotypes to advance an agenda out of step with those they purport to represent. We call upon you to recognize this and find better avenues for your admirable desire to support Autistic people and our families. We call upon you to end your support for Autism Speaks.

Regards,

National:
The Autistic Self Advocacy Network
Self-Advocates Becoming Empowered (SABE)
The National Council on Independent Living (NCIL)
ADAPT
TASH
Disability Rights and Education Defense Fund
The National Youth Leadership Network (NYLN)
Autism Network International (ANI)
Little People of America (LPA)
Not Dead Yet
The Bazelon Center for Mental Health Law
Autistic Spectrum Partnership In Research and Education (AASPIRE)
Mothers From Hell 2

International:
Autistic Self-Advocacy Network-Australia
Autism Rights Group Highland (in Scotland, United Kingdom)
The Autistic Community of Israel
Autreach IT in the United Kingdom
The Southwest Autistic Rights Movement (SWARM) in the United Kingdom

Local and Regional:
ADAPT-Montana
The Center for Disability Rights in Rochester, NY
The Regional Center for Independent Living in Rochester, NY
The Michigan Disability Rights Coalition
The Institute for Disability Access in Austin, Texas
The Maryland Coalition for Inclusive Education
The Paraquad Center for Independent Living in St. Louis, Missouri
The Lonesome Doves in Pennsylvania
TASH-New England
Together Enhancing Autism Awareness in Mississippi (TEAAM)
Wesleyan Students for Disability Rights at Wesleyan University in Connecticut
Tangram in Indianapolis, Indiana

--

Ari Ne'eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org/
info@autisticadvocacy.org
732.763.5530

ASAN Protests Against Autism Speaks

Yesterday ASAN-Portland held a protest at an Autism Speaks walk in response to the "I Am Autism" video, which has infuriated not only Autistic people and our friends and family members, but also disability rights activists across the world with its inexcusable depiction of Autistics as stolen children who ruin their parents' lives.

Portland TV station KOIN 6 reported on the protest as shown in this video:





The station then followed up on the story by interviewing Elesia Ashkenazy, ASAN-Portland Chapter Director. The interview was the lead story on the 11 P.M. local news. You can watch it here:





FOX 12, another local Portland station, also reported on the ASAN protest. This video, which includes a brief statement from Elesia Ashkenazy, also has been made available on YouTube:





Another protest against an Autism Speaks walk will be held in Ohio two weeks from today, on the Ohio State University campus in Columbus. It is expected to draw a larger group and more media coverage than the Portland protest. If you are available to show your support for ASAN on Sunday, October 11 starting at 8:00 AM, please contact Melanie Yergeau at asan.ohiostate@gmail.com to let ASAN-OSU know that you will be there.

News Coverage of Autism Speaks Controversy

Disability Scoop has just published an article on the widespread condemnation of the "I Am Autism" video by Autism Speaks throughout the cross-disability community. Numerous advocacy organizations either have signed on to a joint letter prepared by ASAN President Ari Ne'eman or are reviewing the letter and considering doing so. The open letter—soon to be released—calls on Autism Speaks' donors, sponsors, and supporters to end their involvement with an organization that uses fear and stigma as fundraising tools and, instead, to find other groups more worthy of their support.

The article further reports on Autism Speaks' defensive response to the criticism of "I Am Autism," which the organization—only days after it presented the video to much fanfare at a highly publicized United Nations event—is now attempting to portray as just a personal expression by two fathers.

Taking Action Against "I Am Autism"

ASAN is planning further action against Autism Speaks in response to its appalling "I am Autism" video. The following letter to our community from ASAN President Ari Ne'eman details some ways in which you can get involved.


Hello,

As many of you are aware, Autism Speaks sunk to a new low yesterday - even for them! The "I am Autism" campaign repeats the same tired old lies as the NYU Child Study Center's Ransom Notes ads, which our community successfully stopped in 2007, and goes even further, presenting Autistic people as useless burdens on society, on our families and on the world at large. “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 video campaign. Full text is available here. As we did in response to the "Ransom Notes" ads, we are preparing a joint letter from the disability community in response to these horrific statements, which we hope to have available early next week. If you are connected to an organization that might be interested in signing on to such a letter, please e-mail info@autisticadvocacy.org immediately.

In addition, we are encouraging people to act immediately by joining ASAN in writing singer Bruce Springsteen, scheduled to participate in an Autism Speaks fundraiser in November, to end his newfound association with this organization that devalues our lives and speaks about us without us. You can contact Springsteen's publicist at mlaverty@shorefire.com or by phone at 718-522-7171.

Finally, as we mentioned in our initial press release this morning, ASAN Activists and allies are preparing to confront Autism Speaks fundraising in their own communities. If you would be willing to organize a protest in your community, whether you are a self advocate, family member or other ally, please e-mail us at info@autisticadvocacy.org. There has never been a more important time for our community to assert our voice.

Thank you and, as always, Nothing About Us, Without Us!

Regards,

Ari Ne'eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org/
info@autisticadvocacy.org
732.763.5530

Autistic Community Condemns Autism Speaks

ASAN issued the following press release today condemning Autism Speaks' unethical and offensive "I Am Autism" advertising campaign. Please repost and redistribute widely.


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 at Ohio State University

By Melanie Yergeau, ASAN-OSU Chapter Director


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.

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.

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 Yergeau at the ASAN-OSU table



"Walk if you support eugenics" arrow sign



"Walk if you support stereotypes" arrow sign

White House Meeting on Health Reform

Advocates from the cross-disability community, including Ari Ne'eman, president of the Autistic Self Advocacy Network, recently attended a meeting at the White House with health reform staffers to discuss the proposed inclusion of a Community First Choice Medicaid State Option in the final health reform legislation. The proposal, which is intended to lay the foundation for later enactment of the Community Choice Act, is widely supported in the cross-disability community.




Dan Fisher, Andy Imparato, Ari Ne'eman, Marty Ford, Suellen Galbraith, Bob Williams, Kelly Buckland, and Mike Oxford outside the White House after the health reform meeting.

Photo by Dan Fisher

Billboard Campaign Withdrawn

ASAN sent a letter to the Autism Society of York, Pennsylvania yesterday after we became aware that ASA-York was running a billboard campaign describing Autistic children as "kidnapped." We explained that such language was harmful because it could increase fear and stigma. Amy Wallace, President of ASA-York, responded promptly to our concerns and those of others in the community, agreeing to remove the billboards. (Edit: Media coverage can be found here.)

A brief message from ASAN President Ari Ne'eman appears below:


Hello,

Only a few hours after our letter and thanks to the hard work of bloggers like Joe at Club 166, Abfh, Cracked Mirror in Shalott and others who wrote in and called about the billboard campaign, ASA-York has agreed to pull the billboards. This is a sign of the importance of working together as a community to address issues like this. A year and a half ago, it took the combined strength of 21 disability organizations from across the country to have our voices be heard on a billboard campaign not dissimilar to this one. Today, our community's reputation for action and ethics has grown to the point where we can bring about change much more rapidly. This should serve as a reminder of the importance of a strong, united Autistic community with a clear moral vision of a better future for Autistic people. Small victories like this remind us of what we can accomplish by working as one community on issues of every kind and size. Thank you to everyone who took action and in particular to the members of the blogosphere who first rallied the community around this. I encourage people to write to ASA-York's President Amy Wallace at Amy Wallace amywallace3@gmail.com to express your appreciation for their swift action to remove unethical advertising and to encourage them to work with the Autistic community in the future.

Regards,

Ari Ne'eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org/
info@autisticadvocacy.org
732.763.5530

Join the Disability Community Response to the NY Times

Disability rights activist Stephen Drake of Not Dead Yet wrote the following joint letter, to which ASAN is a signatory, protesting the recent decision of the NY Times Magazine to print an article by Peter Singer that advocated denying health care to people with disabilities. Those who wish to sign the letter individually may do so by email as stated below:


Please read this sign-on letter and consider signing on if you agree with it. If you would like to add your signature to this letter to Gerald Marzorati, Editor of NY Times Magazine send your name and email to jfa@aapd.com by 12 noon EST Monday August 10, 2009.

I apologize for the short notice and the insufficient formatting, but please check out the original at:

http://jfactivist.typepad.com/jfactivist/2009/08/jfaan-response-to-nytimes-article-.html


From the JFA Moderator: The following letter was composed by Not Dead Yet in collaboration with the JFA Action Network with the first signers listed below. We are seeking additional signers. If you would like to add your signature to this letter to Gerald Marzorati, Editor of NY Times Magazine send your name and email to jfa@aapd.com by 12 noon EST Monday August 10, 2009.
In response to Singer rationing:

Dear Mr. Marzorati:

Was it the New York Times Magazine’s intention to assault or diminish the basic tenets of the disability community's civil rights law virtually on the eve of its 19th anniversary? The New York Times Magazine’s decision to publish Peter Singer's latest long essay entitled 'Why We Must Ration Health Care' (7/15/09) less than two weeks before the anniversary of the signing of the Americans with Disabilities Act demonstrates either deliberate malice or reckless disregard of the reality of disability as an important demographic representative of nearly 20% of the American population.

As anyone who has read ‘Why We Must Ration Health Care’ knows, Singer spoke “hypothetically” of assigning a life with quadriplegia as roughly half that of a life without any disability at all. On this “hypothetical” basis, Singer lays out a case for denying health care to people with significant disabilities on the basis that our lives have less value than the lives of nondisabled people.

This is Peter Singer’s most direct assault on the value of the lives of people with physical disabilities past the age of infancy that we have read. His policy proposals allowing for the killing of newborns with disabilities and people with significant cognitive disabilities are already well known.

While this is a bolder assault than we have seen from Professor Singer in the past, it’s hardly surprising. What’s surprising and deeply disturbing is that the NY Times editorial staff have sought him out as a writer on more than one occasion.

To be fair, the NY Times Magazine has published some excellent articles in the past that have covered the disability experience as more than a mere medical issue. The late Harriet McBryde Johnson had several thoughtful articles published in the NY Times Magazine describing the historical oppression directed at people with disabilities, contrasted with the wonderful opportunities that unfold if that oppression is lifted. When Harriet died, many of us were taken aback when the NY Times Magazine editors passed over Harriet’s friends and colleagues to write an end-of-year tribute in the year she died. That honor was bestowed on Professor Singer. Perhaps we should have taken that as a sign of things to come.

Reluctantly, we have to suspect that the NY Times Magazine accepted this piece because of its content, agreeing with Singer that our lives have lessened value and that we represent a drain on the collective economic and health care resources of our country. It’s hard to imagine the NY Times Magazine green-lighting an article that targeted any other group in such a way – e.g. immigrants, the poor, or other groups who have been targeted as scapegoats in the health care debates. Did the editor in charge of publishing this issue even notice that Singer used no factual information at all to support his devaluation of people with disabilities?

We have to wonder what went through the heads of the editorial staff when they thought about the reactions of readers – with or without disabilities – to the large graphic that read “__ YEARS OF A NONDISABLED LIFE IS WORTH __ YEARS OF A DISABLED LIFE.”

Contrast this with Senator Edward Kennedy’s essay on the fight for universal healthcare in the current issue of Newsweek. Talking about people with disabilities he said, in part:

Social justice is often the best economics. We can help disabled Americans who want to live in their homes instead of a nursing home. Simple things can make all the difference, like having the money to install handrails or have someone stop by and help every day.

Obviously, the definitions of justice that Senator Kennedy uses are very different from the definitions favored by Peter Singer and the NY Times Magazine.

Without using the term, Senator Kennedy is also describing the social model of disability. In the traditional medical model of disability, the “problems” of disability are all situated within the person. The medical model defines people with disabilities as having a lower “quality of life” than their nondisabled peers. In reality, most of the limitations put on people with disabilities are socially defined – and can be remediated in the same way. The Americans with Disabilities Act is built on the principles of that social model, acknowledging that disability is a natural part of life and that society has to reflect that reality in an inclusive and supportive way.

The proposed treatment – or nontreatment – of people with disabilities also violates the UN Convention on the Rights of Persons with Disabilities, which was signed by US Ambassador to the United Nations, Susan Rice. She signed the Convention on July 30th at the direction of President Obama. While the Singer essay violates the spirit and vision of the Convention in numerous ways, the most pertinent section of the document is spelled out in Article 25(f), which obligates signatories to “prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.” This is important. Article 4(d) states that countries that have signed the Convention agree to “refrain from engaging in any act or practice that is inconsistent with the present Convention.”

The American disability community, Senator Kennedy and an ever-growing majority of the international community all recognize that public policy has to embrace the inherent equality of the lives of people with disabilities – and public policy must reflect that in practice. The NY Times Magazine and Professor Singer stand opposed to the more progressive voices of social justice, inside and outside of the United States.

We, the undersigned, protest this treatment of people with disabilities within one of the most important public policy debates in our time. The New York Times Magazine has failed in its public responsibility to treat citizens of the United States with the simple respect we deserve by serving up people with disabilities as a drain on public resources and to legitimize the denial of medical care to those of us who need that support the most.

The editorial staff of the New York Times Magazine needs to meet with representatives of disability advocacy groups, with the following goals:

1. The NY Times staff needs to define and clarify its understanding of disability as a basic human rights issue.
2. If the current stance of the NY Times is that the lives of people with disabilities are, in fact, a drain on health care sources, it should be stated on record.
3. Discuss training in the basics of covering disability in news stories – beyond the “human interest” and “medical” angles.
4. Cover the difference between “analysis” and “appealing to bigotry” in public policy discussions.

Urgently,

ADAPT of Montana
American Association of People with Disabilities (AAPD)
Disabilities Network of NYC
Little People of America
MetroWest Center for Independent Living
National Coalition of MH Consumer/Survivor Organizations
National Association of the Deaf
National Council on Independent Living
Not Dead Yet
The Autistic Self Advocacy Network
The Center for Self-Determination
Topeka Independent Living Resource Center


Stephen Drake
Research Analyst
Not Dead Yet
497 State St
Rochester, NY 14608-1642
585-697-1640
http://www.notdeadyet.org