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
Showing posts with label Statements. Show all posts
Showing posts with label Statements. Show all posts
Wednesday, October 7, 2009
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
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
Friday, October 2, 2009
Standing Tall for ASAN and Disability Rights
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
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
Thursday, October 1, 2009
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
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
Wednesday, September 23, 2009
Autism Speaks' Unethical Video Condemned
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.”
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.”
Monday, June 15, 2009
ASAN's Response to Dr. Tony Attwood
The Autistic Self Advocacy Network recently created a petition and a statement to the community regarding the need for Dr. Tony Attwood and Dr. Isabelle Hénault to disassociate themselves from hate groups that use stereotypes and pseudoscience to incite discrimination against Autistic people in family law and relationships. We received a reply from Dr. Attwood consisting only of a form letter, sent to numerous recipients, which wholly failed to address the central issue of his and Dr. Hénault's associations with Maxine Aston and FAAAS and the ongoing harm to Autistics and others with disabilities resulting from these associations. We consider Dr. Attwood's reply grossly inadequate and have set forth a point-by-point response below, with Dr. Attwood's statements in italic formatting.
Dr. Attwood: I would like to state quite clearly that having a diagnosis of autism or Asperger’s syndrome does not render a person automatically incapable of being a good partner and parent. Indeed, many of the people I know with autism and Asperger’s syndrome as clients and friends are exceptionally good parents and partners. Should a separation occur between partners and a Court examine the issue of custody of children and access then in my opinion, any decisions should be made on the basis of the abilities of each parent and not simply assume that a parent with autism or Asperger’s syndrome is incapable of being a good parent.
ASAN: In addition to the possibility that an Autistic person might be assumed to be automatically incapable of being a good partner and parent, which is the most extreme danger posed by false stereotypes of family violence, these stereotypes have given rise to more subtle forms of discrimination in family law. FAAAS has explicitly urged family law courts and social workers to view Autistic partners and parents as more likely than others to be abusive. An article by Sheila Jennings Linehan on the FAAAS website, entitled Representing Cassandra in Matrimonial Law, characterizes the non-Autistic spouse as "a normal individual subjected to prolonged moral distress" who is not believed when she "accurately predicts future harm to her children." Along with Maxine Aston, the article specifically cites you, Dr. Attwood, as authority for such statements. FAAAS member Harriet Simons presents seminars for social workers in which she makes similar claims. Your continued association with FAAAS suggests that you endorse these false claims and, as such, increases the risk that Autistics and others with neurological disabilities will face discrimination within the family law system.
Dr. Attwood: The term “Cassandra Affective Deprivation Disorder” has been coined by Maxine Aston. It is not an official diagnostic category. I do know that stress within a relationship between an adult with Asperger’s syndrome and their partner can lead to the neurotypical partner having signs of a clinical depression. Effective relationship counselling by a counsellor knowledgeable in the area of autism and Asperger’s syndrome can significantly improve the relationship and help alleviate the signs of depression.
ASAN: By failing to acknowledge that stress within a relationship can contribute to depression for either partner, Dr. Attwood—and by your repeated endorsements of Maxine Aston in books and interviews—you are perpetuating the false claim that being in a relationship with an Autistic partner is psychologically harmful to a non-Autistic partner. There is no scientific basis whatsoever for suggesting that depression affects only the non-Autistic partner or that it is caused by affective deprivation related to the Autistic partner's responses. Several recent research studies specifically examining the affective dimensions of empathy and alexithymia found no impairment in the affective responses of Autistic individuals. (Rogers, Dziobek, Hassenstab, Wolf, & Convit, 2007; Berthoz & Hill, 2005; Silani, Bird, Brindley, Singer, Frith, & Frith, 2008.) Rather, cognitive and linguistic differences lead to misunderstandings. Thus, a presumption that the non-Autistic partner suffers from affective deprivation is unwarranted. The Autistic Self Advocacy Network recommends that those who counsel couples with one Autistic partner should adopt a nonjudgmental approach to identifying and constructively addressing misunderstandings that have occurred.
Dr. Attwood: According to my knowledge, there is no research to suggest that people with autism and Asperger’s syndrome are likely to be violent in a relationship to any greater degree than a typical person in the general population. I do know that a significant proportion of the clients that I see in my clinical practice express to me their concern in their ability to manage their temper but we now have programs such as Cognitive Behaviour Therapy to help those with autism and Asperger’s syndrome manage feelings such as anger. Problems with anger management also occur in the ordinary population but the nature of the treatment of difficulties with anger management must include an appreciation of the different experiences and cognitive profile of someone with an Autism Spectrum Disorder.
ASAN: Research studies have established that Autistics are no more likely to commit violent acts or violent crimes than the general population (Murrie, Warren, Kristiansson, & Dietz, 2002; Barry-Walsh & Mullen, 2004). Notwithstanding the scientific evidence, however, FAAAS has repeatedly and falsely stereotyped Autistics as likely to be violent and abusive toward family members and others. When interviewed in July 2008 for a Canwest News Service article, Karen Rodman, founder of FAAAS, asserted that Autistics often lose their temper for no reason. In a local news interview with the Cape Cod Times in February 2007, Rodman argued that Autistic students should be put into segregated schools because their presence purportedly could endanger other students. Dr. Attwood, by continuing to associate with FAAAS and by serving on its Professional Advisory Panel, you are in effect endorsing and lending your credibility to these harmful and prejudiced assertions. In this context, your discussion of clients seeking help for anger problems, who clearly are not a representative sample of the Autistic population as a whole, serves only to muddy the waters further.
Dr. Attwood: I have presented workshops for FAAAS for couples where one of the partners has a diagnosis of Asperger’s syndrome and in all my presentations, I have approached the issues in a very positive way examining strategies to make a successful relationship.
ASAN: In light of the clearly documented history of false stereotypes of violence and psychological harm promoted by FAAAS and other groups associated with the pseudoscientific affective deprivation concept, the Autistic Self Advocacy Network suggests that presenting couples workshops in different venues would be far more likely to result in positive and successful relationships. Dr. Attwood, we therefore reiterate our demands that you promptly disassociate yourself from Maxine Aston, FAAAS, and all similar groups and apologize to our community for the harm done by your past associations with them.
Dr. Attwood: I would like to state quite clearly that having a diagnosis of autism or Asperger’s syndrome does not render a person automatically incapable of being a good partner and parent. Indeed, many of the people I know with autism and Asperger’s syndrome as clients and friends are exceptionally good parents and partners. Should a separation occur between partners and a Court examine the issue of custody of children and access then in my opinion, any decisions should be made on the basis of the abilities of each parent and not simply assume that a parent with autism or Asperger’s syndrome is incapable of being a good parent.
ASAN: In addition to the possibility that an Autistic person might be assumed to be automatically incapable of being a good partner and parent, which is the most extreme danger posed by false stereotypes of family violence, these stereotypes have given rise to more subtle forms of discrimination in family law. FAAAS has explicitly urged family law courts and social workers to view Autistic partners and parents as more likely than others to be abusive. An article by Sheila Jennings Linehan on the FAAAS website, entitled Representing Cassandra in Matrimonial Law, characterizes the non-Autistic spouse as "a normal individual subjected to prolonged moral distress" who is not believed when she "accurately predicts future harm to her children." Along with Maxine Aston, the article specifically cites you, Dr. Attwood, as authority for such statements. FAAAS member Harriet Simons presents seminars for social workers in which she makes similar claims. Your continued association with FAAAS suggests that you endorse these false claims and, as such, increases the risk that Autistics and others with neurological disabilities will face discrimination within the family law system.
Dr. Attwood: The term “Cassandra Affective Deprivation Disorder” has been coined by Maxine Aston. It is not an official diagnostic category. I do know that stress within a relationship between an adult with Asperger’s syndrome and their partner can lead to the neurotypical partner having signs of a clinical depression. Effective relationship counselling by a counsellor knowledgeable in the area of autism and Asperger’s syndrome can significantly improve the relationship and help alleviate the signs of depression.
ASAN: By failing to acknowledge that stress within a relationship can contribute to depression for either partner, Dr. Attwood—and by your repeated endorsements of Maxine Aston in books and interviews—you are perpetuating the false claim that being in a relationship with an Autistic partner is psychologically harmful to a non-Autistic partner. There is no scientific basis whatsoever for suggesting that depression affects only the non-Autistic partner or that it is caused by affective deprivation related to the Autistic partner's responses. Several recent research studies specifically examining the affective dimensions of empathy and alexithymia found no impairment in the affective responses of Autistic individuals. (Rogers, Dziobek, Hassenstab, Wolf, & Convit, 2007; Berthoz & Hill, 2005; Silani, Bird, Brindley, Singer, Frith, & Frith, 2008.) Rather, cognitive and linguistic differences lead to misunderstandings. Thus, a presumption that the non-Autistic partner suffers from affective deprivation is unwarranted. The Autistic Self Advocacy Network recommends that those who counsel couples with one Autistic partner should adopt a nonjudgmental approach to identifying and constructively addressing misunderstandings that have occurred.
Dr. Attwood: According to my knowledge, there is no research to suggest that people with autism and Asperger’s syndrome are likely to be violent in a relationship to any greater degree than a typical person in the general population. I do know that a significant proportion of the clients that I see in my clinical practice express to me their concern in their ability to manage their temper but we now have programs such as Cognitive Behaviour Therapy to help those with autism and Asperger’s syndrome manage feelings such as anger. Problems with anger management also occur in the ordinary population but the nature of the treatment of difficulties with anger management must include an appreciation of the different experiences and cognitive profile of someone with an Autism Spectrum Disorder.
ASAN: Research studies have established that Autistics are no more likely to commit violent acts or violent crimes than the general population (Murrie, Warren, Kristiansson, & Dietz, 2002; Barry-Walsh & Mullen, 2004). Notwithstanding the scientific evidence, however, FAAAS has repeatedly and falsely stereotyped Autistics as likely to be violent and abusive toward family members and others. When interviewed in July 2008 for a Canwest News Service article, Karen Rodman, founder of FAAAS, asserted that Autistics often lose their temper for no reason. In a local news interview with the Cape Cod Times in February 2007, Rodman argued that Autistic students should be put into segregated schools because their presence purportedly could endanger other students. Dr. Attwood, by continuing to associate with FAAAS and by serving on its Professional Advisory Panel, you are in effect endorsing and lending your credibility to these harmful and prejudiced assertions. In this context, your discussion of clients seeking help for anger problems, who clearly are not a representative sample of the Autistic population as a whole, serves only to muddy the waters further.
Dr. Attwood: I have presented workshops for FAAAS for couples where one of the partners has a diagnosis of Asperger’s syndrome and in all my presentations, I have approached the issues in a very positive way examining strategies to make a successful relationship.
ASAN: In light of the clearly documented history of false stereotypes of violence and psychological harm promoted by FAAAS and other groups associated with the pseudoscientific affective deprivation concept, the Autistic Self Advocacy Network suggests that presenting couples workshops in different venues would be far more likely to result in positive and successful relationships. Dr. Attwood, we therefore reiterate our demands that you promptly disassociate yourself from Maxine Aston, FAAAS, and all similar groups and apologize to our community for the harm done by your past associations with them.
Friday, May 8, 2009
Disability Law Symposium Address
On Friday, April 17th, 2009, ASAN President Ari Ne'eman delivered the following comments to the National Federation of the Blind's Disability Law Symposium. A recording of the speech is available here on mp3 and a link to the rest of the symposium materials can be found at: http://www.nfb.org/nfb/Law_Symposium.asp
The past half-century has seen a great proliferation in new kinds of conversation about rights. Once primarily relevant in the context of criminal justice and property disputes, rights-based discourses have expanded their scope throughout our society. We have civil rights, human rights, women’s rights, disability rights, immigrant rights, GLBT rights, commercial rights, social rights, privacy rights, animal rights, children’s rights, student rights, parental rights and countless more. Though we may not all agree on the extent or even legitimacy of them, it cannot be disputed that we have broadened our global conception of the role for this concept called rights in our social, legal, economic, policy and societal frameworks. And yet, at the same time as we have updated the role of rights-based conversations in our society, we remain with some very obsolete ideas about where rights come from. This holds us back.
We go out to the world and we tell them in so many ways that it is time for our rights to be realized. We talk about inclusion, we talk about integration, we talk about access, but when we are asked why, our answers are typically phrased in the language of either cost-benefit or desperate need. The one turns our civil rights struggle into a conversation on policy technicalities; the other evokes the very charity-oriented model of disability support that we have been trying to escape. Neither type of response brings the understanding and the knowledge necessary to communicate both the nature and the urgency of our priorities because both talk about rights without talking about where they derive. To legitimize our rights, we have to explain where they are from and so show that they do exist in the ways we talk about.
But where do rights derive? That is the question. The enlightenment political philosophy that our country was based on put forward the idea of a social contract, arrived at by individuals in a state of anarchy, determining to place some of their G-d-given natural rights into a central government for the purpose of securing the remaining ones. This theory carries with it much charm – it fits with our nation’s philosophy of government by the people, for the people, it recognizes and respects rights as inalienable, not temporal whims to be overridden by the first tyrant with a passing fancy. Unfortunately, it is anachronistic and also inaccurate. There has never been a state of nature and our modern ideas of rights go far beyond the negative right protections against government intervention that are all this model allows for. Our community would not be the only one left out by such a limited conception of rights, but we certainly would be one of the first and one of the worst served.
What does that leave us? Where do rights come from? The United States Declaration of Independence says that men are “endowed by their creator with certain unalienable rights”. I believe that to be true – for both men and women, it should be noted. And yet, for our purposes, this does not help us very much. Because the very reason we seek a source for rights in the first place is to help us understand what they are. Barring a theocracy tied to a particular holy text, the belief that rights are divinely inspired does not shed much light on their nature.
You, the people here gathered today, represent some of the most important leaders of a movement devoted to securing and advancing recognition of the rights of a segment of the global population that has been denied them, perhaps more extensively and more pervasively than any other. For generations upon generations the very idea that our population was discriminated against, was deprived of rights was not even on the agenda. Disability was – and in so many senses, still is perceived – as a problem that should be solved by charity and whose persistence could be blamed only on the lack of sufficient humanitarian instincts on the part of the public and the as yet too slow progression of medical science. Disability rights were not on the agenda as far as rights crusaders were concerned – that was a province for those who ministered to the poor unfortunates of the world, the sad accidents, the there but for the grace of G-d go I angels who gave of themselves and found meaning in those tragic burdens.
Then things started to change – not so much with the world, though it is starting, slowly and not yet by any means surely, but with ourselves. We began not to conceive of our existences as mistakes, our misfortunes as G-d’s will and our utility limited to being gracious for that which hath been given us. We got activated. We got interested. We got angry. We looked out on the world and found the blame for our misfortune lied not with G-d or with medical defects but with a society that was built up for centuries upon centuries without any thought to the prospect that people like us might live in it. In that moment – and we have each found it at different points in our lives – but in that moment, we saw power abused, we saw injustice – in short, we saw wrongs and so our rights were born. In that moment – that epiphany – the world changed for us, and disability rights were born.
In my own community – that of Autistic adults and youth, a group that has been targeted with an unprecedented wave of fear and pity-mongering as of late by entities that unjustly attempt to speak on our behalf – this paradigm shift is motivated by multiple sources. At one level, the socially constructed nature of at least some of our difficulties is a simple conclusion to reach, as many of our challenges are social in nature. At another level, our community’s outrage at lack of representation in the national conversation about us brought us to the disability rights outlook. This is represented for us in the neurodiversity movement, which seeks to recognize our neurology as legitimate and change the autism conversation from one of cures and eugenics to one of quality of life and equality of opportunity. Our movement for what we desire – independent, understanding, opportunity and respect – is a response to attempts to force on us what we oppose – dependency, isolation, pity and loss of control over our own lives.
The very foundation of our legal system comes from something remarkably similar. Why do we guarantee freedom of speech, freedom of petition, freedom of assembly, much less the right to a speedy and public trial or to not have troops quartered in ones home? It is a direct outgrowth of our experiences with the British crown and it was only once we had that experience with injustice that we could properly understand what justice looked like. A quick look across history will reveal much the same thing. Our national experience with slavery imprinted us with the right to freedom from forced servitude on the basis of race. The gains of the civil rights movement were not just the result of superior organization and a superb moral cause, they were our nation’s recognition – still partial – of the legacy of lynching, segregation and racism. Anti-Semitism was driven from the country club to the conspiracy theory fringe when the knowledge of the Holocaust came into our homes. Gay rights have advanced because of public awareness of brutal hate crimes such as the torture and murder of Matthew Shepard. To quote Harvard’s Alan Dershowitz, rights come from wrongs.
Let us be clear. This does not mean that we are purchasing social goods with our victimhood. There are those who would put it in those terms – the people who claim that we are owed something not because it is objectively just for us to receive it but because of our community having been deprived something else that should justly have been ours. Many aspects of the disability policy framework built in decades past are built on that idea, the retributive model of disability. This is the concept behind much of our Social Security Disability infrastructure. The result of it has, in fact, been a form of inaccessible infrastructure unto itself, with individuals forced to swear, even as many are only just starting their lives, that they are incapable of ever working in meaningful employment in order for them to gain the government support necessary to survive. This system was built on old assumptions of dependency – it was built for the conversation about need, not for the one about rights and about justice. It is one of many examples of the kind of infrastructure we must radically alter if we hope to bring the conversation about disability into the 21st century. Another example can be found in the judicial decisions that necessitated the recently signed into law ADA Amendments Act. For what reason did the disability community have to, eighteen years after the ADA first came into effect, work to pass it once again for a considerable portion of the disability population? It is because the judges that interpreted the narrow definition of disability that the legislation sought to fix saw the ADA as a law about charity – specifically, charity for the most severely impaired – not justice for all those who are being discriminated against.
What does the idea of rights coming from wrongs imply then, if not compensation for having been victimized? It should serve to show us what direction our advocacy should take and, much more importantly, it should show the public reason why the goals our advocacy aspires to realize are important. For too long, our civil rights movement has been one by stealth. Even as we built tremendous political power and created civil rights laws and social welfare programs, we often did it not by making a credible claim that this is the way the world should be, but by playing on the idea that society should show “compassion” and “pity” for the disabled. This was not entirely our fault. We’re dealing with a media and, as a result, a general public that has not even begun to understand the nature and implications of disability rights. But regardless of why we are here, we still have to deal with the results of having won our legal and political victories while bypassing the social ones that should have come first. The consequence is that our movement and all the progress it has brought is still seen, in most circles, as one of charity or worse still as a stopgap until – be it by eugenics, euthanasia or medical cures – disability is no longer a part of the human experience. This is what Dr. tenBroek was referring to when he wrote about our “right to live in the world” and the failure of the broader community to accept that right as of yet.
This knowledge places our struggle for recognition of even our victories on the civil rights front in context. Why, almost twenty years after the ADA, do we still see such extensive discrimination and lack of access in terms of employment and places of public accommodation? Why, ten years after Olmstead, do we still see institutions and nursing homes that are near impossible for our people to escape? Why, after Deaf President Now and many similar such actions are so many disability organizations groups that speak about us, without us? Why after the MDA Labor Day Telethon and Ransom Notes and countless other examples of unethical fundraising and advertising tactics do we still see media campaigns that devalue our very personhood and cast us as less than human?
The answer is because when we come to the public with our demands of rights and speak those rights unto the world with all the passion of that aforementioned epiphany, the world only sees part of the message. They see the demand for rights but not the wrongs from which the rights were born. They look at the individual who uses a wheelchair who cannot enter an inaccessible building or the Autistic student who, like I myself have been, is excluded from his home school and what they see is not an inaccessible infrastructure but needy, pitiful dependents. And they may meet our immediate demands for laws and public programs, as charity is still seen as necessary and good and proper by so many well-meaning souls. However, the enforcement of those laws and the implementation of those programs will never be as urgent or as meaningful a priority to them as it is for the “true” civil rights movements.
To them, this is still very much a conversation about need – not injustice. This is not a petty distinction. To have a conversation about justice is to call for a civil rights movement that all members of the human community should feel a moral obligation to join and support. To have a conversation about mere need is to call only for charity conducted mostly by those who usually do not feel that need themselves and have their own ideas about the manner in which it should be fulfilled.I am reminded, by way of example, of an experience my group, the Autistic Self Advocacy Network, had when leading a protest against offensive advertisements depicting children with disabilities as kidnap victims posted across New York City. The campaign, called “Ransom Notes”, consisted of faux ransom notes from the disabilities that had taken the normal children that were supposedly once in the bodies of now disabled young people. We mobilized thousands of Autistic people and those with other disabilities, brought support from two dozen national and regional disability rights organizations and also garnered some support from sympathetic segments of the parent and professional community. Finally, after thousands of phone calls and e-mails, our story began to hit the media – with the UPI headline, “Ads anger parents of autistic children.”
Of course the story was accurately reported in other news sources and we did succeed in getting the ads withdrawn, but there is a certain sense of frustration over the lack of agency that is allowed our community. Even when every single one of the organizations doing press outreach and explaining our case to the public were consumer-controlled disability rights organizations, the only available paradigm that the media could place this in was one in which we were only passive onlookers as our parents fought on our behalf. Every disability group and most disability rights activists have similar stories.
And so even as we spend more money and more political will on disability issues than we ever have before, we are limited in what we can achieve because the conversation is not one about justice, it is not one about recognizing wrongs and rectifying the institutions that continue to commit them. It isn’t about putting power in the hands of the people who have been deprived it. It is about charity and dependency and all of those other things that infantilize and marginalize us, controlled by those who speak for us on our behalf and without our permission.The average member of the public does not know about Buck v. Bell or the tens of thousands of Americans with disabilities or perceived to have disabilities who were involuntarily sterilized as a result of the eugenics movement. They do not know about Willowbrook or the countless Americans with disabilities who have had to live out their whole lives in institutions – much less the many Americans with disabilities who still must suffer this segregation. They don’t know about the Judge Rotenberg Center or school abuse through aversives, restraint and seclusion. The people in charge of our futures do not understand our history. They don’t see ADAPT calling out, “We Will Ride” or “Free Our People”. They don’t see Deaf President Now at Gallaudet. All they see is the Jerry Lewis MDA telethon or the Autism Speaks fear-mongering television advertisements or Jenny McCarthy and Jim Carrey promoting pseudo-scientific claims of pharmaceutical company-government conspiracies to poison their children into autism with vaccines. It isn’t just because the money and the media power is in the hands of those other groups. It’s because the public narrative about disability doesn’t know where to place groups like ASAN and the NFB and a movement like ours. The ideas about dependency run so deep, the charity and victim models are so ingrained, that the response of most reporters and members of the general public to our message is one of cognitive dissonance before pigeonholing our movement into whatever disability narrative is easiest for them to classify us into. Maybe this is why the disability movement has not yet had our Rodney King or Matthew Shepard moment – since the concept of disabled people as suffering is a natural, normal, expected thing in the eyes of the media and the public, suffering brought on from discrimination or abuse is simply placed into the same, “unfortunate but unavoidable” category as all disability-related misfortunes tend to be.
A perfect example of this can be found in the Supreme Court’s Alabama v. Garrett decision, where the court struck down Congress’s attempt to abrogate the sovereign immunity of the states from damages under ADA lawsuits on the grounds that there was insufficient evidence to “identify a pattern of irrational state discrimination in employment against the disabled." To a slim majority of the Justices of the Supreme Court, disability discrimination is not the result of having built infrastructures for only a portion of the population but a perfectly rational act that the equal protection clause cannot be expected to serve as a remedy for. To quote the Court, “the Fourteenth Amendment does not require States to make special accommodations for the disabled, so long as their actions toward such individuals are rational. They could quite hardheadedly–and perhaps hardheartedly–hold to job-qualification requirements which do not make allowance for the disabled. If special accommodations for the disabled are to be required, they have to come from positive law and not through the Equal Protection Clause.” Here, once again, disability rights are not matters of equal protection given to full citizens under the law, they are portrayed as matters of charity that good hearted people engage in.
The good news is that this does show us what our next steps should be. It explains the biggest obstacle for the disability rights movement’s ascension to the next level of rights discourse in America - placing us on par with other minority groups based on race, religion, sexual orientation and similar attributes. That obstacle is the failure to take our message to the public. I’m pleased by the progress that we’re seeing in that direction in respect to the growing Disability History movement, attempting to incorporate the history of people with disabilities and our civil rights struggle into the classroom just as the experiences of other American minority groups has been incorporated. In many ways, finding a way to cement our past into the American national narrative will be the best way to ensure we have a future. We must carry that message forward, but to succeed we need our President and Congressional representatives to join us in making that case to the American people. Furthermore, it is important for us to memorialize and to educate the public about the achievements of men such as Dr. Jacobus tenBroek as well as other disability leaders like Ed Roberts or Justin Dart not just to pay respect to those who have gone before but to show the world that we do have a history of taking control over our own lives and that there is a real and legitimate civil rights movement of, by and for people with disabilities. To quote Ed Roberts, “the greatest lesson of the civil rights movement is that the moment you let others speak for you, you lose.” Showing the world those parts of our past where we have confronted the wrongs that are being committed against us and restored agency to our community is one way for us to take back our voice.
Another thing that we must do is to begin to confront and to confront vigorously those organizations and groups that speak about us, without us. When Jerry Lewis or VOR or Autism Speaks go to the public and claim to represent the needs and perspectives of the disability community with their calls for more pity, more segregation, more eugenics and more distance from our dream of being recognized as equal citizens in this society, they perpetrate upon us an obscenity. This obscenity nevertheless has use in that teaches us about how important to the disability rights movement it is for us to take control of our own message and our own community. We must organize not just around laws but around the public conversation on disability, confronting those corporate donors and political infrastructures that give support to these repressive, fear-mongering groups that challenge our right to live in this world. To quote Dr. tenBroek himself, “there are…large and powerful agencies abroad in the land, considerable in number and vast in influence, which remain hostile to our movement in thought, in speech, and in action. Under the guise of professionalism, [they] would perpetuate colonialism. [Their] philosophy is a throwback to the age of the silent client, before the revolution in welfare and civil rights, which converted the client into an active and vocal partner in the programming and dispensing of services. In…[their]…lofty disregard of the organized blind as the voice of those to be served, [they] betray bureaucratic bias that is…[an]…image of the blind client not as a person to be served but as a defective mechanism to be serviced.” The same could be said about many similar groups that speak about us, without us in many disability communities.
Finally, in order to communicate our message to the public, we must also realize that the most effective social change comes not from activism but from individuals. For the public to understand that the disability message is a civil rights message, they must hear that message from their friends, their family members and their co-workers with disabilities. Beyond this, for us to accomplish that, we must succeed in broadening the base of the disability rights movement to encompass a broader scope of people with disabilities in general. There remain too many people with disabilities who do not yet have the chance to participate in our community. We must broaden our community and give every disabled person access to the disability culture and perspective.
I’d like to end by quoting American philosopher Henry David Thoreau, who said, “You have built castles in the clouds, now you must build the foundation underneath them.” As we talk about how to imprint the American public with the meaning and message of the disability rights movement, we talk about what must be done to build the foundations that will show that our vision is no dream. This is what we must do. This is what we can do. This is what we will do. Thank you for your time and I look forward to working with all of you to bring this hope into reality.
Ari Ne'eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org
732.763.5530
The past half-century has seen a great proliferation in new kinds of conversation about rights. Once primarily relevant in the context of criminal justice and property disputes, rights-based discourses have expanded their scope throughout our society. We have civil rights, human rights, women’s rights, disability rights, immigrant rights, GLBT rights, commercial rights, social rights, privacy rights, animal rights, children’s rights, student rights, parental rights and countless more. Though we may not all agree on the extent or even legitimacy of them, it cannot be disputed that we have broadened our global conception of the role for this concept called rights in our social, legal, economic, policy and societal frameworks. And yet, at the same time as we have updated the role of rights-based conversations in our society, we remain with some very obsolete ideas about where rights come from. This holds us back.
We go out to the world and we tell them in so many ways that it is time for our rights to be realized. We talk about inclusion, we talk about integration, we talk about access, but when we are asked why, our answers are typically phrased in the language of either cost-benefit or desperate need. The one turns our civil rights struggle into a conversation on policy technicalities; the other evokes the very charity-oriented model of disability support that we have been trying to escape. Neither type of response brings the understanding and the knowledge necessary to communicate both the nature and the urgency of our priorities because both talk about rights without talking about where they derive. To legitimize our rights, we have to explain where they are from and so show that they do exist in the ways we talk about.
But where do rights derive? That is the question. The enlightenment political philosophy that our country was based on put forward the idea of a social contract, arrived at by individuals in a state of anarchy, determining to place some of their G-d-given natural rights into a central government for the purpose of securing the remaining ones. This theory carries with it much charm – it fits with our nation’s philosophy of government by the people, for the people, it recognizes and respects rights as inalienable, not temporal whims to be overridden by the first tyrant with a passing fancy. Unfortunately, it is anachronistic and also inaccurate. There has never been a state of nature and our modern ideas of rights go far beyond the negative right protections against government intervention that are all this model allows for. Our community would not be the only one left out by such a limited conception of rights, but we certainly would be one of the first and one of the worst served.
What does that leave us? Where do rights come from? The United States Declaration of Independence says that men are “endowed by their creator with certain unalienable rights”. I believe that to be true – for both men and women, it should be noted. And yet, for our purposes, this does not help us very much. Because the very reason we seek a source for rights in the first place is to help us understand what they are. Barring a theocracy tied to a particular holy text, the belief that rights are divinely inspired does not shed much light on their nature.
You, the people here gathered today, represent some of the most important leaders of a movement devoted to securing and advancing recognition of the rights of a segment of the global population that has been denied them, perhaps more extensively and more pervasively than any other. For generations upon generations the very idea that our population was discriminated against, was deprived of rights was not even on the agenda. Disability was – and in so many senses, still is perceived – as a problem that should be solved by charity and whose persistence could be blamed only on the lack of sufficient humanitarian instincts on the part of the public and the as yet too slow progression of medical science. Disability rights were not on the agenda as far as rights crusaders were concerned – that was a province for those who ministered to the poor unfortunates of the world, the sad accidents, the there but for the grace of G-d go I angels who gave of themselves and found meaning in those tragic burdens.
Then things started to change – not so much with the world, though it is starting, slowly and not yet by any means surely, but with ourselves. We began not to conceive of our existences as mistakes, our misfortunes as G-d’s will and our utility limited to being gracious for that which hath been given us. We got activated. We got interested. We got angry. We looked out on the world and found the blame for our misfortune lied not with G-d or with medical defects but with a society that was built up for centuries upon centuries without any thought to the prospect that people like us might live in it. In that moment – and we have each found it at different points in our lives – but in that moment, we saw power abused, we saw injustice – in short, we saw wrongs and so our rights were born. In that moment – that epiphany – the world changed for us, and disability rights were born.
In my own community – that of Autistic adults and youth, a group that has been targeted with an unprecedented wave of fear and pity-mongering as of late by entities that unjustly attempt to speak on our behalf – this paradigm shift is motivated by multiple sources. At one level, the socially constructed nature of at least some of our difficulties is a simple conclusion to reach, as many of our challenges are social in nature. At another level, our community’s outrage at lack of representation in the national conversation about us brought us to the disability rights outlook. This is represented for us in the neurodiversity movement, which seeks to recognize our neurology as legitimate and change the autism conversation from one of cures and eugenics to one of quality of life and equality of opportunity. Our movement for what we desire – independent, understanding, opportunity and respect – is a response to attempts to force on us what we oppose – dependency, isolation, pity and loss of control over our own lives.
The very foundation of our legal system comes from something remarkably similar. Why do we guarantee freedom of speech, freedom of petition, freedom of assembly, much less the right to a speedy and public trial or to not have troops quartered in ones home? It is a direct outgrowth of our experiences with the British crown and it was only once we had that experience with injustice that we could properly understand what justice looked like. A quick look across history will reveal much the same thing. Our national experience with slavery imprinted us with the right to freedom from forced servitude on the basis of race. The gains of the civil rights movement were not just the result of superior organization and a superb moral cause, they were our nation’s recognition – still partial – of the legacy of lynching, segregation and racism. Anti-Semitism was driven from the country club to the conspiracy theory fringe when the knowledge of the Holocaust came into our homes. Gay rights have advanced because of public awareness of brutal hate crimes such as the torture and murder of Matthew Shepard. To quote Harvard’s Alan Dershowitz, rights come from wrongs.
Let us be clear. This does not mean that we are purchasing social goods with our victimhood. There are those who would put it in those terms – the people who claim that we are owed something not because it is objectively just for us to receive it but because of our community having been deprived something else that should justly have been ours. Many aspects of the disability policy framework built in decades past are built on that idea, the retributive model of disability. This is the concept behind much of our Social Security Disability infrastructure. The result of it has, in fact, been a form of inaccessible infrastructure unto itself, with individuals forced to swear, even as many are only just starting their lives, that they are incapable of ever working in meaningful employment in order for them to gain the government support necessary to survive. This system was built on old assumptions of dependency – it was built for the conversation about need, not for the one about rights and about justice. It is one of many examples of the kind of infrastructure we must radically alter if we hope to bring the conversation about disability into the 21st century. Another example can be found in the judicial decisions that necessitated the recently signed into law ADA Amendments Act. For what reason did the disability community have to, eighteen years after the ADA first came into effect, work to pass it once again for a considerable portion of the disability population? It is because the judges that interpreted the narrow definition of disability that the legislation sought to fix saw the ADA as a law about charity – specifically, charity for the most severely impaired – not justice for all those who are being discriminated against.
What does the idea of rights coming from wrongs imply then, if not compensation for having been victimized? It should serve to show us what direction our advocacy should take and, much more importantly, it should show the public reason why the goals our advocacy aspires to realize are important. For too long, our civil rights movement has been one by stealth. Even as we built tremendous political power and created civil rights laws and social welfare programs, we often did it not by making a credible claim that this is the way the world should be, but by playing on the idea that society should show “compassion” and “pity” for the disabled. This was not entirely our fault. We’re dealing with a media and, as a result, a general public that has not even begun to understand the nature and implications of disability rights. But regardless of why we are here, we still have to deal with the results of having won our legal and political victories while bypassing the social ones that should have come first. The consequence is that our movement and all the progress it has brought is still seen, in most circles, as one of charity or worse still as a stopgap until – be it by eugenics, euthanasia or medical cures – disability is no longer a part of the human experience. This is what Dr. tenBroek was referring to when he wrote about our “right to live in the world” and the failure of the broader community to accept that right as of yet.
This knowledge places our struggle for recognition of even our victories on the civil rights front in context. Why, almost twenty years after the ADA, do we still see such extensive discrimination and lack of access in terms of employment and places of public accommodation? Why, ten years after Olmstead, do we still see institutions and nursing homes that are near impossible for our people to escape? Why, after Deaf President Now and many similar such actions are so many disability organizations groups that speak about us, without us? Why after the MDA Labor Day Telethon and Ransom Notes and countless other examples of unethical fundraising and advertising tactics do we still see media campaigns that devalue our very personhood and cast us as less than human?
The answer is because when we come to the public with our demands of rights and speak those rights unto the world with all the passion of that aforementioned epiphany, the world only sees part of the message. They see the demand for rights but not the wrongs from which the rights were born. They look at the individual who uses a wheelchair who cannot enter an inaccessible building or the Autistic student who, like I myself have been, is excluded from his home school and what they see is not an inaccessible infrastructure but needy, pitiful dependents. And they may meet our immediate demands for laws and public programs, as charity is still seen as necessary and good and proper by so many well-meaning souls. However, the enforcement of those laws and the implementation of those programs will never be as urgent or as meaningful a priority to them as it is for the “true” civil rights movements.
To them, this is still very much a conversation about need – not injustice. This is not a petty distinction. To have a conversation about justice is to call for a civil rights movement that all members of the human community should feel a moral obligation to join and support. To have a conversation about mere need is to call only for charity conducted mostly by those who usually do not feel that need themselves and have their own ideas about the manner in which it should be fulfilled.I am reminded, by way of example, of an experience my group, the Autistic Self Advocacy Network, had when leading a protest against offensive advertisements depicting children with disabilities as kidnap victims posted across New York City. The campaign, called “Ransom Notes”, consisted of faux ransom notes from the disabilities that had taken the normal children that were supposedly once in the bodies of now disabled young people. We mobilized thousands of Autistic people and those with other disabilities, brought support from two dozen national and regional disability rights organizations and also garnered some support from sympathetic segments of the parent and professional community. Finally, after thousands of phone calls and e-mails, our story began to hit the media – with the UPI headline, “Ads anger parents of autistic children.”
Of course the story was accurately reported in other news sources and we did succeed in getting the ads withdrawn, but there is a certain sense of frustration over the lack of agency that is allowed our community. Even when every single one of the organizations doing press outreach and explaining our case to the public were consumer-controlled disability rights organizations, the only available paradigm that the media could place this in was one in which we were only passive onlookers as our parents fought on our behalf. Every disability group and most disability rights activists have similar stories.
And so even as we spend more money and more political will on disability issues than we ever have before, we are limited in what we can achieve because the conversation is not one about justice, it is not one about recognizing wrongs and rectifying the institutions that continue to commit them. It isn’t about putting power in the hands of the people who have been deprived it. It is about charity and dependency and all of those other things that infantilize and marginalize us, controlled by those who speak for us on our behalf and without our permission.The average member of the public does not know about Buck v. Bell or the tens of thousands of Americans with disabilities or perceived to have disabilities who were involuntarily sterilized as a result of the eugenics movement. They do not know about Willowbrook or the countless Americans with disabilities who have had to live out their whole lives in institutions – much less the many Americans with disabilities who still must suffer this segregation. They don’t know about the Judge Rotenberg Center or school abuse through aversives, restraint and seclusion. The people in charge of our futures do not understand our history. They don’t see ADAPT calling out, “We Will Ride” or “Free Our People”. They don’t see Deaf President Now at Gallaudet. All they see is the Jerry Lewis MDA telethon or the Autism Speaks fear-mongering television advertisements or Jenny McCarthy and Jim Carrey promoting pseudo-scientific claims of pharmaceutical company-government conspiracies to poison their children into autism with vaccines. It isn’t just because the money and the media power is in the hands of those other groups. It’s because the public narrative about disability doesn’t know where to place groups like ASAN and the NFB and a movement like ours. The ideas about dependency run so deep, the charity and victim models are so ingrained, that the response of most reporters and members of the general public to our message is one of cognitive dissonance before pigeonholing our movement into whatever disability narrative is easiest for them to classify us into. Maybe this is why the disability movement has not yet had our Rodney King or Matthew Shepard moment – since the concept of disabled people as suffering is a natural, normal, expected thing in the eyes of the media and the public, suffering brought on from discrimination or abuse is simply placed into the same, “unfortunate but unavoidable” category as all disability-related misfortunes tend to be.
A perfect example of this can be found in the Supreme Court’s Alabama v. Garrett decision, where the court struck down Congress’s attempt to abrogate the sovereign immunity of the states from damages under ADA lawsuits on the grounds that there was insufficient evidence to “identify a pattern of irrational state discrimination in employment against the disabled." To a slim majority of the Justices of the Supreme Court, disability discrimination is not the result of having built infrastructures for only a portion of the population but a perfectly rational act that the equal protection clause cannot be expected to serve as a remedy for. To quote the Court, “the Fourteenth Amendment does not require States to make special accommodations for the disabled, so long as their actions toward such individuals are rational. They could quite hardheadedly–and perhaps hardheartedly–hold to job-qualification requirements which do not make allowance for the disabled. If special accommodations for the disabled are to be required, they have to come from positive law and not through the Equal Protection Clause.” Here, once again, disability rights are not matters of equal protection given to full citizens under the law, they are portrayed as matters of charity that good hearted people engage in.
The good news is that this does show us what our next steps should be. It explains the biggest obstacle for the disability rights movement’s ascension to the next level of rights discourse in America - placing us on par with other minority groups based on race, religion, sexual orientation and similar attributes. That obstacle is the failure to take our message to the public. I’m pleased by the progress that we’re seeing in that direction in respect to the growing Disability History movement, attempting to incorporate the history of people with disabilities and our civil rights struggle into the classroom just as the experiences of other American minority groups has been incorporated. In many ways, finding a way to cement our past into the American national narrative will be the best way to ensure we have a future. We must carry that message forward, but to succeed we need our President and Congressional representatives to join us in making that case to the American people. Furthermore, it is important for us to memorialize and to educate the public about the achievements of men such as Dr. Jacobus tenBroek as well as other disability leaders like Ed Roberts or Justin Dart not just to pay respect to those who have gone before but to show the world that we do have a history of taking control over our own lives and that there is a real and legitimate civil rights movement of, by and for people with disabilities. To quote Ed Roberts, “the greatest lesson of the civil rights movement is that the moment you let others speak for you, you lose.” Showing the world those parts of our past where we have confronted the wrongs that are being committed against us and restored agency to our community is one way for us to take back our voice.
Another thing that we must do is to begin to confront and to confront vigorously those organizations and groups that speak about us, without us. When Jerry Lewis or VOR or Autism Speaks go to the public and claim to represent the needs and perspectives of the disability community with their calls for more pity, more segregation, more eugenics and more distance from our dream of being recognized as equal citizens in this society, they perpetrate upon us an obscenity. This obscenity nevertheless has use in that teaches us about how important to the disability rights movement it is for us to take control of our own message and our own community. We must organize not just around laws but around the public conversation on disability, confronting those corporate donors and political infrastructures that give support to these repressive, fear-mongering groups that challenge our right to live in this world. To quote Dr. tenBroek himself, “there are…large and powerful agencies abroad in the land, considerable in number and vast in influence, which remain hostile to our movement in thought, in speech, and in action. Under the guise of professionalism, [they] would perpetuate colonialism. [Their] philosophy is a throwback to the age of the silent client, before the revolution in welfare and civil rights, which converted the client into an active and vocal partner in the programming and dispensing of services. In…[their]…lofty disregard of the organized blind as the voice of those to be served, [they] betray bureaucratic bias that is…[an]…image of the blind client not as a person to be served but as a defective mechanism to be serviced.” The same could be said about many similar groups that speak about us, without us in many disability communities.
Finally, in order to communicate our message to the public, we must also realize that the most effective social change comes not from activism but from individuals. For the public to understand that the disability message is a civil rights message, they must hear that message from their friends, their family members and their co-workers with disabilities. Beyond this, for us to accomplish that, we must succeed in broadening the base of the disability rights movement to encompass a broader scope of people with disabilities in general. There remain too many people with disabilities who do not yet have the chance to participate in our community. We must broaden our community and give every disabled person access to the disability culture and perspective.
I’d like to end by quoting American philosopher Henry David Thoreau, who said, “You have built castles in the clouds, now you must build the foundation underneath them.” As we talk about how to imprint the American public with the meaning and message of the disability rights movement, we talk about what must be done to build the foundations that will show that our vision is no dream. This is what we must do. This is what we can do. This is what we will do. Thank you for your time and I look forward to working with all of you to bring this hope into reality.
Ari Ne'eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org
732.763.5530
Tuesday, January 6, 2009
Obama Transition Autism Policy Recommendations
The Obama transition team invited ASAN and other advocacy groups to present recommendations on policy priorities for autism issues. ASAN President Ari Ne'eman issued the following statement about these recommendations:
Hello,
This past Friday, we met with representatives from the Office of the President-Elect on Autism Policy. The meeting was attended by representatives from the Autistic Self-Advocacy Network, Easter Seals, TASH, the Marino Foundation, Autism Speaks and the Autism Society of America. At the request of the Office of the President-elect, we presented to the new administration our top three policy priorities for the coming year: 1) Supporting and Empowering autistic adults, 2) Ending School Abuse and Ensuring a Free and Appropriate Public Education for Every Student, and 3) Balancing the Research Agenda in Support of Quality of Life. You can read our recommendations to the new Administration on our website and we encourage you to post them on your blogs, listservs and elsewhere.
Although these are our top three priorities, they do not represent our only action items and we are pleased to report that the incoming administration expressed a strong interest in remaining in continuous contact on these and other issues. It is absolutely essential that we ensure that autistic self-advocates have a voice at the policy table and we will continue to keep you up to date as we advocate for the autistic community.
Nothing About Us, Without Us!
Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org/
732.763.5530
Hello,
This past Friday, we met with representatives from the Office of the President-Elect on Autism Policy. The meeting was attended by representatives from the Autistic Self-Advocacy Network, Easter Seals, TASH, the Marino Foundation, Autism Speaks and the Autism Society of America. At the request of the Office of the President-elect, we presented to the new administration our top three policy priorities for the coming year: 1) Supporting and Empowering autistic adults, 2) Ending School Abuse and Ensuring a Free and Appropriate Public Education for Every Student, and 3) Balancing the Research Agenda in Support of Quality of Life. You can read our recommendations to the new Administration on our website and we encourage you to post them on your blogs, listservs and elsewhere.
Although these are our top three priorities, they do not represent our only action items and we are pleased to report that the incoming administration expressed a strong interest in remaining in continuous contact on these and other issues. It is absolutely essential that we ensure that autistic self-advocates have a voice at the policy table and we will continue to keep you up to date as we advocate for the autistic community.
Nothing About Us, Without Us!
Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org/
732.763.5530
Wednesday, October 1, 2008
Joint Comment to the IACC
In response to the Interagency Autism Coordinating Committee's request for public comments on its Draft Strategic Plan, ASAN and other autism and disability rights organizations have submitted the following joint statement:
The Autistic Self Advocacy Network Coalition Comments on
Interagency Autism Coordinating Committee
Request for Information NOT-MH-08-021
September 30, 2008
This joint comment on the Draft Strategic Plan is submitted by The Autistic Self Advocacy Network and the undersigned organizations. Our combined organizations collectively represent thousands of citizens with disabilities, including individuals on the autism spectrum, as well as well as family members, professionals and other allies of citizens on the autism spectrum. The Autistic Self Advocacy Network aims to empower autistic people across the lifespan, by focusing on supports, service delivery, and education research. As such, we have an interest in the inclusion of autistic adults in all aspects of IACC's decision-making process, research topic selection, research design and research implementation.
The Autistic Self Advocacy Network applauds the efforts of the IACC to develop a Strategic Plan that will address the needs and concerns of individuals on the autism spectrum and our families. We are especially encouraged by the invitation extended by IACC members to listen to the viewpoint of autistic people, because our viewpoint frequently departs from the traditional concern with causes, cures, and prevention of all autism spectrum conditions.
The Autistic Self Advocacy Network and our supporting organizations suggest several areas of concern to be addressed in the draft Strategic Plan:
1. All federally-funded researchers must consider the impact that their research will have on autistic citizens' human rights, their dignity, and the quality of their lives, from prenatal life forward.
Research focused on early detection and intervention, prevention/preemption, pharmaceutical interventions, prenatal treatments, and the like needs to be conducted with the human dignity and rights of the individual as the foremost concerns.
2. Implement a research agenda that addresses services and supports for people on the autism spectrum throughout the lifespan. Change the emphasis of research away from prevention and cure and toward effective supports for community inclusion.
Currently (as of May 12, 2008), only 1% of NIMH's $127 million budget for autism research addresses the area of services and support. More resources should be allocated to this area. We share the committee's "sense of urgency" when we speak about quality-of-life issues for people on the autism spectrum, such as education, employment, and housing needs.
For example, a more aggressive agenda must be pursued for researching alternative and augmentative communication technology and other assistive communication technologies. The only augmentive/alternative communication technology mentioned in the Strategic Plan is PECS; however, PECS is not always appropriate or even useful to many people on the autism spectrum, particularly for those with visual processing difficulties, or those who need more sophisticated assistive technologies. Lower-cost communications devices need to be researched and tested to enable more people on the autism spectrum to communicate with their families and communities. New modes of alternative communication and augmentive communication that take advantage of autistic individuals' processing strengths and state-of-the-art technology should be pursued.
Interventions other than Applied Behavior Analysis must be studied. Because research on ABA has shown only limited positive outcomes, other methods must be studied, keeping in mind the heterogeneity of the autistic population. Not all people on the autism spectrum will respond positively to a single approach. As Dr. Catherine Lord of the University of Michigan Center for Human Growth and Development says, in her Omnibus Autism Proceedings testimony, "We know that behavioral treatments make some difference but it's a relatively small amount of difference."
Emphasis should also be placed on identifying the optimal and often unique ways that autistic people think, learn, communicate, and remember. Such research will help parents of autistic children and professionals who work with autistic children to better understand and meet those children's' needs. Examples from other areas illustrate this concept: Hearing parents of deaf children are often well served by learning to sign. Sighted parents of blind children are often well served by learning to read Braille. The same principle applies to parents of autistic children; parents deserve attention and intervention alongside their children. Right now, our interventions merely force autistic children to learn, think, behave, and communicate like non-autistic children. Instead, they should be taught how to learn, think, behave, and communicate like autistic children, so that they can maximize their capabilities.
Longitudinal studies that address quality-of-life and satisfaction-with-life issues need to be undertaken, including research on access and utilization of services in community settings. Research into living arrangements, employment options, relations within the community, guardianship questions, and other aspects of daily life need to be conducted. These are the issues we consider to be of greatest urgency.
3. Conduct research into unique strengths of autistic individuals and positive experiences of living with autism.
Much research and fundraising language emphasizes "costs to society" and uses the disrespectful rhetoric of "burden." The National Center on Disability and Journalism strongly recommends against describing persons with disabilities, or their disabilities, as burdens because "portraying [persons] with disabilities as a burden to family, friends, and society can dehumanize them." We strongly agree.
Similarly, many NIH-funded researchers and staff speak of autism as "a devastating disorder." However, many individuals on the autism spectrum do not feel that they are leading lives that are less worthy or more filled with suffering than those of other citizens. Moreover, a growing body of research literature demonstrates that the autistic spectrum profile can be accurately characterized by documented strengths, including the ability to focus on details and qualities such as intense interests, which can sometimes be channeled into productive employment. Research must also address education of the public, including parents, about traits that are often seen as "impairments," but which, in reality, are often innocuous or compensatory mechanisms.
4. Require that individuals on the autism spectrum be actively involved as collaborators and participants on all IACC subcommittees.
Most of the recent IACC workgroups, including the treatment and services workgroup, did not have adequate participation from members on the autism spectrum. If future workgroups are convened, every attempt must be made to include autistic individuals in more than a token way. Comparisons can be made to other fields in which persons affected by the research are involved in the research, such as deaf scientists who study deaf language and culture. As MacArthur Fellowship recipient Harlan Lane articulated with regard to deaf research: "…involve deaf people themselves at all levels of the undertaking. Federal agencies ... should require the projects they sponsor to turn preferentially to the deaf community for advisers and collaborators in research design and implementation, for assistance in data collection and analysis, for guidance in interpretation of results." We strongly recommend that the federal agencies that fund autism research endorse this socially responsible position and mandate the involvement of individuals on the autism spectrum in all aspects of the research process.
Ari Ne'eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org/
732.763.5530
Andrew Imparato
President
American Association of People with Disabilities
1629 K Street NW, Suite 503
Washington, DC 20006
http://www.aapd-dc.org/
Barbara Trader, MS
Executive Director
TASH
http://www.tash.org/
Sharisa Joy Kochmeister
President
Autism National Committee
http://www.autcom.org/
Estee Klar-Wolfond
Founder/Executive Director
The Autism Acceptance Project
http://www.taaproject.com/
Compiled by ASAN Board Member Paula C. Durbin-Westby
The Autistic Self Advocacy Network Coalition Comments on
Interagency Autism Coordinating Committee
Request for Information NOT-MH-08-021
September 30, 2008
This joint comment on the Draft Strategic Plan is submitted by The Autistic Self Advocacy Network and the undersigned organizations. Our combined organizations collectively represent thousands of citizens with disabilities, including individuals on the autism spectrum, as well as well as family members, professionals and other allies of citizens on the autism spectrum. The Autistic Self Advocacy Network aims to empower autistic people across the lifespan, by focusing on supports, service delivery, and education research. As such, we have an interest in the inclusion of autistic adults in all aspects of IACC's decision-making process, research topic selection, research design and research implementation.
The Autistic Self Advocacy Network applauds the efforts of the IACC to develop a Strategic Plan that will address the needs and concerns of individuals on the autism spectrum and our families. We are especially encouraged by the invitation extended by IACC members to listen to the viewpoint of autistic people, because our viewpoint frequently departs from the traditional concern with causes, cures, and prevention of all autism spectrum conditions.
The Autistic Self Advocacy Network and our supporting organizations suggest several areas of concern to be addressed in the draft Strategic Plan:
1. All federally-funded researchers must consider the impact that their research will have on autistic citizens' human rights, their dignity, and the quality of their lives, from prenatal life forward.
Research focused on early detection and intervention, prevention/preemption, pharmaceutical interventions, prenatal treatments, and the like needs to be conducted with the human dignity and rights of the individual as the foremost concerns.
2. Implement a research agenda that addresses services and supports for people on the autism spectrum throughout the lifespan. Change the emphasis of research away from prevention and cure and toward effective supports for community inclusion.
Currently (as of May 12, 2008), only 1% of NIMH's $127 million budget for autism research addresses the area of services and support. More resources should be allocated to this area. We share the committee's "sense of urgency" when we speak about quality-of-life issues for people on the autism spectrum, such as education, employment, and housing needs.
For example, a more aggressive agenda must be pursued for researching alternative and augmentative communication technology and other assistive communication technologies. The only augmentive/alternative communication technology mentioned in the Strategic Plan is PECS; however, PECS is not always appropriate or even useful to many people on the autism spectrum, particularly for those with visual processing difficulties, or those who need more sophisticated assistive technologies. Lower-cost communications devices need to be researched and tested to enable more people on the autism spectrum to communicate with their families and communities. New modes of alternative communication and augmentive communication that take advantage of autistic individuals' processing strengths and state-of-the-art technology should be pursued.
Interventions other than Applied Behavior Analysis must be studied. Because research on ABA has shown only limited positive outcomes, other methods must be studied, keeping in mind the heterogeneity of the autistic population. Not all people on the autism spectrum will respond positively to a single approach. As Dr. Catherine Lord of the University of Michigan Center for Human Growth and Development says, in her Omnibus Autism Proceedings testimony, "We know that behavioral treatments make some difference but it's a relatively small amount of difference."
Emphasis should also be placed on identifying the optimal and often unique ways that autistic people think, learn, communicate, and remember. Such research will help parents of autistic children and professionals who work with autistic children to better understand and meet those children's' needs. Examples from other areas illustrate this concept: Hearing parents of deaf children are often well served by learning to sign. Sighted parents of blind children are often well served by learning to read Braille. The same principle applies to parents of autistic children; parents deserve attention and intervention alongside their children. Right now, our interventions merely force autistic children to learn, think, behave, and communicate like non-autistic children. Instead, they should be taught how to learn, think, behave, and communicate like autistic children, so that they can maximize their capabilities.
Longitudinal studies that address quality-of-life and satisfaction-with-life issues need to be undertaken, including research on access and utilization of services in community settings. Research into living arrangements, employment options, relations within the community, guardianship questions, and other aspects of daily life need to be conducted. These are the issues we consider to be of greatest urgency.
3. Conduct research into unique strengths of autistic individuals and positive experiences of living with autism.
Much research and fundraising language emphasizes "costs to society" and uses the disrespectful rhetoric of "burden." The National Center on Disability and Journalism strongly recommends against describing persons with disabilities, or their disabilities, as burdens because "portraying [persons] with disabilities as a burden to family, friends, and society can dehumanize them." We strongly agree.
Similarly, many NIH-funded researchers and staff speak of autism as "a devastating disorder." However, many individuals on the autism spectrum do not feel that they are leading lives that are less worthy or more filled with suffering than those of other citizens. Moreover, a growing body of research literature demonstrates that the autistic spectrum profile can be accurately characterized by documented strengths, including the ability to focus on details and qualities such as intense interests, which can sometimes be channeled into productive employment. Research must also address education of the public, including parents, about traits that are often seen as "impairments," but which, in reality, are often innocuous or compensatory mechanisms.
4. Require that individuals on the autism spectrum be actively involved as collaborators and participants on all IACC subcommittees.
Most of the recent IACC workgroups, including the treatment and services workgroup, did not have adequate participation from members on the autism spectrum. If future workgroups are convened, every attempt must be made to include autistic individuals in more than a token way. Comparisons can be made to other fields in which persons affected by the research are involved in the research, such as deaf scientists who study deaf language and culture. As MacArthur Fellowship recipient Harlan Lane articulated with regard to deaf research: "…involve deaf people themselves at all levels of the undertaking. Federal agencies ... should require the projects they sponsor to turn preferentially to the deaf community for advisers and collaborators in research design and implementation, for assistance in data collection and analysis, for guidance in interpretation of results." We strongly recommend that the federal agencies that fund autism research endorse this socially responsible position and mandate the involvement of individuals on the autism spectrum in all aspects of the research process.
Ari Ne'eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org/
732.763.5530
Andrew Imparato
President
American Association of People with Disabilities
1629 K Street NW, Suite 503
Washington, DC 20006
http://www.aapd-dc.org/
Barbara Trader, MS
Executive Director
TASH
http://www.tash.org/
Sharisa Joy Kochmeister
President
Autism National Committee
http://www.autcom.org/
Estee Klar-Wolfond
Founder/Executive Director
The Autism Acceptance Project
http://www.taaproject.com/
Compiled by ASAN Board Member Paula C. Durbin-Westby
Subscribe to:
Posts (Atom)
