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