Autistic Self Advocacy Network
I share this message from Ari Ne'man and The Autistic Self Advocay Network with you with Ari's permission.
Last May, I and other advocates crashed a party – a twitter party, to be exact. USA Today had put together a live twitter chat with the nation’s “top experts” on autism – a group that notably excluded any actual Autistic people. Unimpressed, the live chat was crashed by a few dozen Autistic adults who did a great job communicating that old time “Nothing About Us, Without Us!” spirit. Liz Szabo, the USA Today medical reporter moderating the live chat, responded fairly well, apologizing and making sure that self-advocate participants were included after all. Later that day, I got a very nice e-mail from her, promising to learn the lesson about self-advocate inclusion for the future. Mission accomplished, right?
Well, perhaps not so much. Today, USA Today ran a front page feature by Liz Szabo on mental health policy, encompassing 3,024 words over three articles and including color photos, infographics and an extensive table analyzing mental health policies across the nation. What it did not include, shockingly, was the voice of a single person with a psychiatric disability. Given the topic – one article uncritically makes the case that involuntary commitment laws must be strengthened and expanded – this is a serious flaw and one that is undeserving of a newspaper of USA Today’s national stature.
The rationale behind an error like this is baffling, to say the least. It seems hardly credible that the author could not locate a single disabled person. One understands the pressures faced by modern journalists in these times of newsroom cutbacks, but surely they can do better than this. Furthermore, the failure to speak or present the opinions of a single opponent to the expansion of civil commitment laws is unbelievable, given the stakes. Does USA Today believe that expanding institutionalization and forced treatment is so uncontroversial as to not deserve the presentation of both sides? What possible explanation could be offered for such shoddy work?
Regrettably, the problem extends beyond Szabo and USA Today, both of whom have good intentions. Most journalists reporting on disability issues today come from backgrounds in health or medicine, where the working assumption is that physicians should drive the conversation and little difference should exist between parent and self-advocate perspectives. For many in the media, reporting the voices of those most directly impacted is an afterthought, too often forgot about in the rush to meet a deadline. This outlook has real and practical consequences.
In the aftermath of the unspeakable tragedy in Newtown, the news media plays a disproportionate role in shaping the public conversation. Policymakers and the general public look to newspapers to help determine practical solutions to challenges like gun violence. When journalists ignore the communities they are charged with reporting on, we all lose an opportunity to become better educated on the issues that face our country. Beyond that, ill-advised policy solutions are uncritically promoted without thought to their unintended consequences.
This is not journalism. USA Today’s readership and the public at large deserve better. As the media continues to stoke public fears about disabled people in the aftermath of Newtown, it falls to us in the disability rights movement to make sure that they get the message. Just as our community speaks up when Autistic people are left out of conversations about autism, we should be speaking up when other groups of disabled people are excluded from conversations in which they should play a major role. In the words of our nation’s founding father, Benjamin Franklin, “We must all hang together – or we will sure hang separately.”
Annoyed? Angry? Don’t just sit there and take it – do something! Here are some options:
- Tweet your concerns to Liz Szabo, the USA Today journalist who wrote the mental health pieces, at @LizSzabo – use the hashtag #aboutwithout so we can track your interest. Be polite in your comments – but be heard!
- Send USA Today a Letter to the Editor by e-mailing firstname.lastname@example.org. Include your name, address and daytime and evening phone numbers (if you cannot use the phone, note this and provide an e-mail address that you check frequently). The newspaper’s website notes that letters of 200 words or less have the highest likelihood of being accepted.
- E-mail Brent Jones, USA Today’s Public Editor, with your concerns about lack of self-advocate representation email@example.com.
I just got confirmation that the House Oversight Committee has invited two leaders of the autistic self-advocacy community to be witnesses at the hearing they are holding this Thursday on the federal government's response to autism. The majority members have invited Michael John Carley, president of the Global and Regional Asperger's Syndrome Partnership, and the minority members have invited Ari Ne'eman, president of the Autistic Self Advocacy Network.
Mr. Carley told me, "My hope is to convey to the committee that how we proceed (with special regard to tone), is just as important as the question of 'in what direction do we proceed?'"
Great news, but you aren't off the hook yet!
You still need to attend the hearing if you can, and we all need to fax our own written testimony to the committee.
"If you want us to include you when we talk about autism,
you have to stop asking so autistic."
(thAutoons book I Love Being My Own Autistic Self
now available for sale.)
Next Thursday, November 29, the House Congressional Oversight Committee is holding a hearing on the federal response to autism. Unfortunately, no autistic people have been called as witnesses. Fortunately, there are things you can do to make this situation better.
1. If you can, please attend the hearing. It is taking place in the Rayburn House Office Building at 2:00 pm. The Autistic Self Advocacy Network is rallying in front of the building at 11:00 am. If you cannot attend in person, the hearing is being streamed live here.
2. Please sign this petition, also from ASAN, which asks that autistic people be included as witnesses.
3. Please submit your own written testimony and contact your Representative in Congress.
You can fax your own testimony to (202)225-2974. Dr. Matthew Carey has created a form that allows you send a fax.
Dr. Carey also suggests some things that you might include:
1) We need focus on improving the quality of life of Autistics
2) While not all Autistics can self-advocate, if we are going to have autism organizations represented, we need to have Autistic-run organizations represented.
3) Autism is a very broad spectrum, all with challenges of some sort. The government’s response needs to be broad (read-larger than it is now) in order to encompass all the needs of these communities.
4) The vaccine-epidemic hypothesis has been very damaging to the autism communities. Please don’t allow this meeting to be a way around the science in order to keep that idea alive.
5) There are faux therapies in common use for autism. Many are harmless. Some are dangerous and based on incredibly poor science. We need to get accurate information out about these practices.
Emily Willingham recently wrote about things that autistic people want from science, which are pretty much the same things many of us think the government should invest it. You might want to look at that article in terms of suggesting priorities.
Thanks to Paula C. Durbin-Westby, who is responding passionately to this situation.
In a stunningly bigoted editorial, the Washington Times ridicules efforts by the United States Justice Department to hire more people with disabilities:
You don’t have to have a severe intellectual disability to work at the Justice Department. But it helps.
According to a July 31 policy memo titled “Hiring of persons with targeted disabilities,” otherwise problematic mental deficiencies are no barrier to jump-starting a career at Justice. The memo lists a number of “targeted disabilities” that trigger special hiring privileges in compliance with President Obama’s Executive Order 13548. Among them are people with “severe intellectual disability,” “psychiatric disability” or other undefined “current severe physical, intellectual or mental conditions.” Most employers would balk at even minor mental disabilities in hiring a lawyer, let alone severe ones. But the policy states that the Cabinet department run by Attorney General Eric H. Holder Jr. must “achieve a work force from all segments of society,” which includes those who are teetering on the edge of sanity.
The Autistic Self Advocacy Network responds:
According to The Washington Times, disabled people are hopelessly damaged goods: we are automatically unqualified or poorly qualified for positions within the Justice Department, and inherently incapable of providing taxpayers with a “superior level of public service.” The author ignores the long-standing and deeply entrenched ableism that pervades hiring processes in the public and private sectors. Along with perpetuating damaging stereotypes about disabled people—particularly those of us with developmental and psychiatric disabilities—the author makes bold assertions based on factual inaccuracies.
Updated to make the headline more accurate. There is an ASAN action alert here.
ASAN expresses concern regarding new HHS report on autism research
New report uses “creative accounting” to reflect increase in services-research; confirms persistent under-representation of adult needs
Washington, DC – July, 10th, 2012 – This morning, the Office of Autism Research Coordination (OARC) within the federal Department of Health and Human Services (HHS) released a new report analyzing the allocation of autism research funds in the public and private sector. The Autistic Self Advocacy Network, the leading national advocacy organization run by and for adults on the autism spectrum, issued a statement expressing concern regarding the low percentage of funds allocated to the needs of adults and a change in reporting methodology utilized to report a dramatic growth in the percentage of funding reported to service-provision research, despite a lack of comparable real funding increases in this area.
“This report confirms that the national autism research agenda is dangerously out of step with the priorities of Autistic people and our families,” said Ari Ne’eman, President of the Autistic Self Advocacy Network and outgoing member of the Inter-Agency Autism Coordinating Committee (IACC), “Furthermore, the report’s increase from 3% to 16% in the percentage of funding allocated to services-research is almost entirely attributable to OARC’s choice to count pre-existing funding streams around practitioner training as research. This kind of creative accounting presents the impression of research progress where little exists.”
The new report – the 2010 IACC ASD Research Portfolio Analysis – found $408 million was spent across 1,367 autism research projects in 2010. Of that, only 2% went to research into the needs of adults. While OARC reported that 16% of the research agenda funded projects relating to the service provision needs of children and adults on the autism spectrum, 74% of OARC’s reported services-funding could be attributed to pre-existing practitioner training programs. These programs, such as the Health Resources Services Administration’s (HRSA) Leadership Education in Neurodevelopmental Disorders (LEND) are long-standing and have never before been considered research. In 2009, OARC reported only 3% of the research agenda going into services and less than 1% going towards the needs of adults.
“It is concerning that the research funding community persists in paying so little attention to the developmental period those of us on the autism spectrum will spend the majority of our lives in,” said ASAN Board Vice Chair and incoming IACC member Scott Robertson, “As a new member of the IACC, I intend to work to raise the profile of Autistic adult and service-provision related priorities. The Autistic community deserves real change.”
The Autistic Self Advocacy Network is a 501(c)(3) nonprofit organization run by and for Autistic people. ASAN’s supporters include Autistic adults and youth, cross-disability advocates, and non-autistic family members, professionals, educators and friends. ASAN was created to provide support and services to individuals on the autism spectrum while working to educate communities and improve public perceptions of autism. Its activities include public policy advocacy, community engagement to encourage inclusion and respect for neurodiversity, quality of life oriented research, and the development of Autistic cultural activities.