From the Board: New Year, New Opportunities
by Ari Ne’eman
2011 was a time of incredible growth for ASAN. We hired our first full time staff members, held our Five Year Anniversary Celebration and our Symposium on Ethical, Legal and Social Issues in Autism Research, launched exciting new projects around higher education and health care and continued to deepen our commitment to ensuring the inclusion of Autistic voices in policymaking. As 2012 begins, it is time for us to give some thought to what the new year may bring.
In 2012, we will be launching our Autism Campus Inclusion project, a new initiative aimed at training Autistic college students in activism and systems change strategies to support a strong self-advocacy and neurodiversity movement on college campuses. In the next few weeks, you’ll see more information on what promises to be an incredibly promising capacity-building opportunity for our community. In addition, we’re redoubling our efforts on topics like employment – continuing our collaboration with Freddie Mac and looking to develop resources aimed at empowering self-advocacy in employment, as we have in higher education in the past. These and other projects will help us keep up the momentum and excitement that sustained our progress in 2012.
Yet, at the same time, we need to redouble our commitment to advocacy, recognizing that we still have a long way to go towards achieving our goals. In the mid-20th century, Jacobus tenBroek, the founder of the National Federation of the Blind, one of the first self-advocacy organizations in the United States, wrote, “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.”
Today, the Autistic Community faces similar challenges as other disabled peoples did in the past and still do today. As current events show, opponents of self-advocacy and self-determination still serve in the halls of power, and their voices are as prominent as our own, if not more so. For too many with decision-making authority over the lives of disabled people, money and prestige take precedence over real inclusion and self-determination. How do we rectify this, in light of the challenges our community faces in making our voices heard?
The answer can only be found by coming together. Our only option is to engage in the hard work of organizing, mobilizing and empowering all who have reason to find themselves as part of our world. That isn’t an easy task. There are many differences which characterize the Autistic community and the broader disability rights movement within which we are a part. However, by finding the common thread of our underlying convictions, we can make a difference. Now, at long last, we have a chance to change the national conversation on autism. Let’s not let it pass us by.
|Ari Ne’eman at ASAN’s 5th Anniversary Fundraiser||ASAN Director of Community Engagement Melody Latimer and ASAN Intern Lydia Brown|
|ASAN’s Scott Robertson||Autistics Speaking Day Creators Corina Becker and Kathryn Bjornstad|
ASAN’s 5-Year Anniversary Fundraiser
by Emily Titon
On November 16, 2011, the Autistic Self Advocacy Network (ASAN) community gathered at the National Press Club in Washington, D. C., to celebrate ASAN’s fifth year anniversary. If you had told me we’d be here at the Press Club five years ago, I might not have believed you. While the idea of Autistic people taking control of their own lives, let alone helping to create national policy, is still a pretty radical idea–perhaps even a frightening or threatening idea to some–it was even more so in 2006. And yet, here we were, many of the friends I’ve made at ASAN over the years and I, along with allies such as Carol Quirk and Barbara Trader of TASH, Samantha Crane of the Bazelon Center for Mental Health Law and Policy, and senior policymakers and members of the Obama administration.
It was clear that we were being heard and having an impact, even though we have a long way to go before Autistic people and those with other disabilities see true equality and full inclusion become reality. It was wonderful to celebrate and reflect on the things we have accomplished so far, gather momentum and energy for the future, and have a great evening as well.
In five years, ASAN has grown from a dream shared by two friends, Ari Ne’eman and Scott Robertson, to a 501(c)(3) organization with chapters in multiple states and countries. Ne’eman is currently serving on the National Council on Disability as an appointee of President Obama; Robertson has had his research published in prestigious academic journals and was recently honored by the American Public Health Association. Both men have served on several important panels and advisory committees, many at the federal or state government level, and are well-respected neurodiversity advocates and leaders in the disability rights movement.
Other ASAN Board members and chapter leaders are also doing things that not too long ago would have been unthinkable or at least so difficult as to be nearly impossible for Autistic people. Many have college degrees and have had their work published in respectable journals. Others wrote legislation to improve the lives of Autistic people, and others served on committees, influencing policy and legislation impacting people’s lives.
Master of Ceremonies Jim Weisman, Senior Vice President and General Counsel of the United Spinal Association, stepped up to the podium to lead us in an enjoyable brief recap of the disability rights movement as it had been to this point, leading into a humorous introduction of Ne’eman. Ne’eman gave one of his best speeches in recent memory. He discussed how he, Robertson, and others came to realize that the struggle for Autistic rights was similar to the civil rights struggles people with other disabilities had been facing for years. They then set about finding and building community with other Autistics and finding common ground with the larger cross-disability community.
Assistant Secretary of Education Alexa Posny spoke about the need for implementing good, accessible transition services for post-secondary students, and the importance of teaching self-advocacy and self-determination skills and principles to young people in school. As she talked, I visualized a fully inclusive future for all children with disabilities, a future in which they were raised with confidence and were never made to feel inferior to those without disabilities or told that they were broken and needed to be fixed. Sharon Lewis, the Commissioner of the Administration on Developmental Disabilities, had some kind words about ASAN’s role in the broader self-advocacy movement.
The guests moved down the hall for coffee, desserts, and the presentation of the first annual Autistic Self Advocacy Network awards. The first award, for Outstanding Ally, went to Nancy Thaler, the Executive Director of the National Association of State Directors of Developmental Disability Services. Ms. Thaler spoke about how much she liked to see the self-advocacy community selecting its own allies and how it was an example of the shift toward self-determination in the self-advocacy movement, as well as in service provision.
The award for Exceptional Service to the Autism Community was presented to Kathryn Bjornstad and Corina Lynn Becker for their creation of Autistics Speaking Day, an event created in response to Communication Shutdown, a perhaps well-meant but misguided approach to trying to simulate the “isolation and inability to communicate” of Autistic people. Autistics Speaking Day is now an annual event where Autistic people are encouraged to loudly communicate their thoughts and experiences through blog posts, videos, art, and social media.
There is something really cool that happens when a bunch of Autistic people meet up and hang out together – I think that’s called community – but for me one of life’s gifts can be seeing people finding that community for the first time. That’s what I saw when I was introduced to Ms. Bjornstad and Ms. Becker, and that was definitely one of the stand out moments of the evening for me. Ms. Bjornstad says that her experience at the fundraiser was extremely positive. “I got to meet many Autistic activists I’d only known online for the first time, and as a result I feel more than ever as if I am part of an Autistic community. I hope there will be other similar events in the future and other people will have opportunities to be part of the Autistic community as well.”
Given the events of the rest of the year since the celebration, and the ASAN community building that has been happening online and off, I have no doubt that the 2012 Autistic Self Advocacy Celebration will be just as wonderful and as strong and have as many triumphs to celebrate as this year’s, and then some. I’m looking forward to it, and I hope I’ll see you there!
by Landon Bryce
The Autistic Self Advocacy Network’s new publishing effort is about having
“loud hands”, which means celebrating and preserving Autistic culture and resilience. Fundraising has begun for its first effort, which will include both a print anthology and a multimedia website.
Julia Bascom is spearheading the Loud Hands Project. She heard the phrase from a parent, who said their child wasn’t taught “quiet hands” because they would need loud hands one day. “I spent a lot of time thinking about why that sentence struck me so much,” she said, “and then I started to use it as a placeholder for a much bigger theory.”
“First of all, of course, a lot of Autistic people are familiar with the idea of ‘quiet hands.’ Quiet hands don’t flap, don’t tap, don’t gesticulate enthusiastically, are indistinguishable from hands belonging to aneurotypical person. ‘Loud hands’ originated in opposition to this.
“‘Having loud hands’ is about being proudly Autistic,” Julia explained. “I have loud hands when I’m playing with my purple beads while working, orwhen I see another autistic person at the store and flap at them, or when I get excited about something and allow myself to show it. Loud hands are also inherently defiant–pulling my hands back when someone grabs them, deciding for myself if my priorities are indistinguishability and passing and stealth or being happy and being able to think, being proud of something I’m told to be ashamed of, making a deliberate choice to stim in public because I need to get groceries and the alternative is not being able to finish the trip, signing or typing when I can’t speak.
“Basically, ‘loud hands’ is a metaphor for how I made peace with myself and how I want to see the world changed. I’d love to see a time when people don’t notice my hands at all, when flapping doesn’t mean I’m inherently lesser and needing to type interviews instead of talking over the phone isn’t an accommodation, just one of several neutral options. But until then, I have a choice between loud hands and quiet hands, and I chose loud.”
The anthology Loud Hands: Autistic People, Speaking will feature essays by Autistic people on autism acceptance, neurodiversity, Autistic pride and culture, disability rights and resistance, and resilience. Julia stresses the importance of getting this work into print.
“We’re hoping to use the anthology to hear from a wide number of Autistic people about their experiences and goals so that we can be informed by a variety of voices moving forward. It’s also important to document this stuff, to start keeping a record. The internet has been fundamental to theAutistic community, but web pages can disappear and frankly, it’s not always entirely accessible. It’s also really hard to get a sense of context and history on the internet, at least for me. I think it’s really important that we start collecting and archiving all the amazing writing and culture the Autistic community has been producing.”
Film and video will be an equally important part of this transmedia project. They will be featured on a website that will also serve as a hub for submissions and planning. Julia has already created a video trailer with the help of Zoe Gross and other Autistic advocates.
Zoe hopes the Loud Hands Project will help young Autistic people gain self-respect. “Most of the messages they get about themselves are so negative — in some of these settings, they’re taught that they have to change everything about themselves. So I loved the idea of creating a project that would allow autistic teens and adults to get the word out that it doesn’t have to be that way, to talk about Autistic culture and how we’ve come to accept ourselves.”
In only slightly over two weeks, the project has reached and exceeded its goal of $10,000, an accomplishment that leaves Julia “overwhelmed, humbled, and inspired. Each donation, each time someone has passed along the link, tweeted us, or shared our facebook page, is a vote of confidence–and the vote has been overwhelmingly this matters to us. This is important. It’s not something I can possibly take lightly.”
As of this publication, Julia is preparing additional information for the community on new projects that reaching higher fundraising targets will allow ASAN to accomplish, including the development of videos stressing Autistic culture and community, a conference fund to empower self-advocates to connect with the broader disability rights movement, a website focused on the needs of newly diagnosed Autistic adults and adolescents and much more.
Fundraising for Loud Hands will continue through March 15th at The Loud Hands Project’s website.
The History of ASAN
by Meg Evans
Origins of Autistic Advocacy
Autistic self-advocacy became organized in the 1990s as a part of the disability rights movement when groups such as Autism Network International were formed. The Internet made it possible to stay in contact by way of mailing lists and other online groups, which some self-advocates described as an emerging culture. Forum communities developed on sites such as autistics.org, which also maintains an extensive library of articles relating to autism and disability rights. Self-advocates began to feel more confident about speaking out on many issues of concern.
Early Days of ASAN
The Autistic Self Advocacy Network was founded in 2006 by Ari Ne’eman and Scott Michael Robertson. Chapter meetings addressed topics such as inclusive education, peer mentoring, and learning how to advocate for oneself on a campus. The original ASAN website featured many articles by students describing their experiences, along with general information and resources relating to autism. With ASAN’s encouragement, supporters gave interviews and presentations to improve the public’s understanding of autism and to dispel prejudices.
The Ransom Notes Controversy
In December 2007, billboards designed to look like ransom notes went up all over New York City. Described in more detail in this article, these billboards compared autism and several other conditions to evil kidnappers snatching children from society and destroying their future. Both the self-advocate and parent communities were outraged, as was the cross-disability community. ASAN organized a letter-writing protest campaign and prepared a joint letter from disability rights organizations demanding the immediate removal of the billboards. The mainstream media reported on the controversy. In just two weeks, public pressure achieved the removal of the billboards.
A Growing Advocacy Organization
After the Ransom Notes incident made ASAN widely known, more local chapters formed across the United States and in Canada and Australia. ASAN developed close working relationships with other disability rights groups on vital issues such as improving community services and supports, promoting inclusion and equal opportunity in schools and in the workplace, and preventing abuse and bullying. Through a variety of projects, ASAN has been working to improve the public’s understanding and acceptance of autism, to support participatory research that is relevant to the Autistic community’s needs, to empower young self-advocates to become leaders, and to promote community integration and self-determination. Our goal is to bring about a future where every Autistic person will have equal access and rights in society.
Big Events from ASAN’s History
The Ransom Notes Campaign
The disability world is full of inappropriate or harmful campaigns, and the Ransom Notes campaign is a perfect example. Intended as a public service announcement by the New York University Child Study Center, fictional ransom notes from disabilities (including autism) were placed in advertisements, indicating that the disability had kidnapped the children and held the children hostage, preventing them from doing things non-disabled children did. The ads used overwhelmingly negative language to describe autistic people.
Many disability advocacy organizations were disturbed by the ads, including ASAN. Ari Ne’eman played an instrumental role in alerting the public to the ads, creating a petition that drew thousands of signatures and support from multiple organizations, leading to media attention and the ultimate withdrawal of the Ransom Notes ads. ASAN became well-known as a result of their campaign against the ransom notes and thereafter developed a reputation for standing up against demeaning portrayals of Autistic people by organizations that claim to help them.
Ari Ne’eman Appointed to the National Council on Disability
In December 2009, President Barack Obama appointed ASAN President Ari Ne’eman to the National Council on Disability. Ne’eman is believed to be the first openly Autistic presidential appointee.
Ne’eman came to President Obama’s attention through his multiple advocacy efforts and his attempts to include Autistic people’s voices in discussions about autism in law and public policy.
Ne’eman’s inclusion means a great deal for the Autistic community — after years of demanding to be included in conversations about autism and disability we are seeing our efforts pay off. We cried “Nothing about us without us” and we are being heard. Autistic representation in government agencies is a step forward for autism acceptance and Autistic autonomy.
ASAN Releases Navigating College
In 2011 ASAN published Navigating College, a book written for Autistic college students. Navigating College was released with a corresponding website, including a blog with posts written by Autistic people.
The purpose of the book and website is to provide a guide to Autistic students and to give advice on advocacy, accommodation, relationships, and any other issues Autistic college students may face.
Navigating College has been a huge success in terms of book sales, downloads of the PDF version of the book, and page views, and is already benefitting Autistic students across the United States.
Visit the Navigating College website for your copy today.
News and Updates
MA Department of Developmental Services Acts Against Shocks at Judge Rotenberg Center
At the end of the fall 2011, Massachusetts enacted into law regulations proposed earlier in the year that will ban the use of electric shock aversives at the Judge Rotenberg Center in Canton, MA for all future students. The regulations unfortunately do allow the shocks to continue for students who were still receiving them after September under a court approved plan, subject to a yearly review.
The regulations passed despite strong opposition from the JRC lobby at both public hearings on the regulations during the summer. ASAN continues to support Disability Rights International (DRI), the author of the 2009 Torture Not Treatment report, in lobbying for the end of electric shock on all students.
US Labor Department Seeks Comments on New Rule on Employing People with Disabilities
The U.S. Department of Labor has proposed a new rule requiring federal contractors and subcontractors to set a hiring goal of having 7 percent of their workforces be people with disabilities.
The department’s Office of Federal Contract Compliance Programs invites public comment on this proposal, which will be published in the Dec. 9 edition of the Federal Register. The proposed regulatory changes detail specific actions contractors must take in the areas of recruitment, training, record keeping and policy dissemination in order to promote employment equality.
To read the notice of proposed rulemaking or submit a comment, visit the federal e-rulemaking portal. Comments also can be submitted by mail to Debra Carr, Office of Federal Contract Compliance Programs, U.S. Department of Labor, Room C-3325, 200 Constitution Ave. NW, Washington, D.C. 20210. All comments must be received by 7 Feb. 2012, and should include identification number (RIN) 1250-AA02.
ASAN Urges New York to End Chemical Restraint
In late December, the New York Times ran an expose documenting the systemic overuse of psychotropic medication on people with intellectual and developmental disabilities, including on large numbers of people who do not have the mental health conditions for which those medications are usually prescribed, which has been extensively documented by the National Core Indicators project, a national database run by the Human Services Research Institute and the National Association of State Directors of Developmental Disability Service.
In response, ASAN created a petition on Change.org demanding the end of chemical restraints. The long term side effects of such inappropriate usage include obesity, diabetes, long term brain damage, injury and even death. As a result, we are asking you to join us in writing to the New York Office of People with Developmental Disabilities and the NY Legislature to tell them to take action against chemical restraint today!
Call for Applications for the Eileen Sweeney Graduate Internship in Disability Policy
Eliza Sweeney worked to improve the lives of people with disabilities, and the internship that carries her names encourages others to follow in her footsteps. The internship is available to “graduate students aspiring to a career in social policy with a focus on disability.”
Those receiving the internship would receive a stipend of $3500 and spend 12 weeks of their summer at the National Academy of Social Insurance in Washington, D.C. Academic credit can be arranged with the students’ colleges. The program will allow students to work with important figures in the disability community.
Petitions Against Abuse in Schools
ASAN intern Lydia Brown started two petitions on Change.org demanding required education for teachers and prohibition of restraint and seclusion after two horrifying incidents with Autistic students.
The first petition was in response to school officials charging Alabama Autistic student Emily Holcomb with assault after a teacher had restrained her, and resulted in the charges being dropped and successful mediation with the school.
The second petition, in response to Kentucky Autistic student Chris Baker’s seclusion inside a bag meant for therapy, gained national attention and currently has over 150,000 signatures. Sign the Chris Baker petition here.
Call for Papers for Social, Political & Ethical Perspectives on Autism Conference
On 28 April 2012 a conference on Social, Political & Ethical Perspectives on Autism will be held at the Meadowlands campus of Bergen Community College from 12:00 pm-5:00 pm.
Academic paper submissions sought from psychology, philosophy, sociology, bioethics and other disciplines on any topic related to psychological, social, political, and ethical issues related to autism, broadly construed. Proposals will be accepted from educators, practitioners, individuals on the spectrum, and their advocates.
Send abstracts of no more than 150 words. All proposals should be for 20-30 minute presentations. Abstracts should be sent in .doc, .docx, .pdf, .rtf, or .txt format. Include title of paper, 100-word abstract, author’s name, author’s institutional afﬁliation, and email address. Please indicate whether you would be willing to serve as a commentator should your paper not be accepted. All submissions must be received by 1 February 2012. Send submissions by email to Alexandra Perry, M.Ed. at APerry@bergen.edu or Anthony Yankowski, Psy.D. atAYankowski@bergen.edu
ASAN Signs Joint Letter Supporting Keeping All Students Safe in Schools Act
ASAN joined sixteen other disability rights organizations as part of the Alliance for the Prevention of Restraint, Aversive Interventions and Seclusion (APRAIS) in signing a joint letter in support of the Keeping All Students Safe in Schools Act.
Take action to urge your representatives and senators to co-sponsor this bill! A full tool kit for advocacy is online at www.tash.org under Take Action, Why Our Children Can’t Wait on the far right side.
This legislation expects schools to emphasize preventing the need for emergency behavior interventions by establishing practices that are evidence based, as well as creating federal protections against life-threatening restraints that inhibit breathing, seclusion, and mechanical and chemical restraints. It restricts restraint to emergency situations when there is an imminent threat of bodily injury, prohibits the inclusion of a plan for restraint use in a student’s IEP, requires 24 hour parental notification and a required debriefing process, emphasizes the use of Functional Behavior Assessments and Behavioral Intervention Plans, and creates requirements for personnel training and data collection.