The Autistic Self Advocacy Network: March 2011 Newsletter

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Volume 1.2 | March 2011

Autreat | Call for Proposals

Autreat is a retreat-style conference run by Autism Network International (ANI), for autistic people and our families, friends, supporters, and interested professionals. ANI is accepting presentation proposals for Autreat 2011, to be held Monday-Friday, August 8-12, 2011, in Johnstown, Pennsylvania (approximately 75 miles from the nearest major airport at Pittsburgh, Pennsylvania).

PROPOSAL DEADLINE: May 1, 2011

For more information, visit the Call for Proposals webpage.

From the Board | Good Intentions

by Ari Ne'eman

People frequently ask what makes ASAN different from other autism organizations - why is it that it is so important that a group exist out there run by and for Autistic adults ourselves, as opposed to family members, professionals, educators or doctors? After all, parents simply want what is best for their children and people usually don't go into fields like disability service-provision, education or medicine if they don't want to help people. Don't we respect their good intentions?

We most certainly do, we respond, but good intentions aren't always enough to prevent bad outcomes. The history of the disability rights movement is as much a history of fighting against bad outcomes as it is a history of raising awareness in a world ignorant of disability. In the early 20th century, tens of thousands of Americans were involuntarily sterilized to "protect society" from the birth of more people with disabilities. From the many people with disabilities who are still forcibly imprisoned in nursing homes and institutions to the electric shocks delivered at the Judge Rotenberg Center, some of the worst things that happen to us are done supposedly for our own good and in our name. Even as recently as last year's Congressional debates on legislation to prevent abusive restraint and seclusion in schools, opponents of reform argued in favor of what they called therapeutic restraint, objecting to limiting restraint to emergency situations on the grounds that it should be considered a legitimate treatment.

Of course, we don’t mean to suggest that parents and service providers generally favor such abuses. There are many who stand with us to defend human rights, and we value their support. But we need to remember our history, particularly when groups run by self-advocates conflict with groups run by parents and providers. On issues like resisting overmedicalization or working to end the exception in federal law which lets certain employers pay people with disabilities less than minimum wage, we need the ability to have self-advocate voices be heard. This is all the more necessary when doing so angers those who in other circumstances are our friends and allies. Not because parents and professionals aren't our friends - but because they don't live our lives and don't suffer the unintended consequences when their good intentions go wrong.

As much as we love and value our parents, friends, service-providers and allies, in the end, we will be living with the consequences of the policies and programs practiced upon us. We live with the consequences of everything that is claimed to be done for our own good. That is why self-advocacy is important - because we have the most at stake, to gain or to lose. That is why we work and organize to build power of, by and for people with disabilities, speaking on our own behalf. The stakes are too high for us to do otherwise. Because in the end, good intentions just aren't good enough.

Autism NOW Center

by Paula C. Durbin-Westby

Recently ASAN became a partner organization on the Autism NOW National Resource and Information Center. The Autism NOW Center is a grant to the Arc via the Administration on Developmental Disabilities (ADD). The Center's goals are to disseminate information and resources about autism to a wide range of people, including Autistic people, parents, and others interested in autism.

ASAN has several roles with the Autism NOW Center. One of the subcontracted services we provide is the Co-Director position. I am Co-Director of the Center, with a variety of roles and tasks assigned to me. One of my most important jobs at the Center, which is not in my job description, is to teach staff at the Center and at the Arc about autism from the perspective of someone who is Autistic. Since Center staff come from a variety of backgrounds in the developmental disability world, not everyone has direct experience with Autistic people. Another important duty of the Co-Director is liaison with the Center's Advisory Committee. Currently we are still working on staffing the Advisory Committee, and working toward having a majority of people who identify as having a disability- Autistics and people with other developmental and intellectual disabilities. I will write more about the Committee in future issues of the newsletter. My Co-Director's page is here; I will be adding to it from time to time and also writing for the Center's e-newsletter from time to time: http://autismnow.org/about/from-the-co-director/.

ASAN also has several other important roles with the Center. We are taking the lead in developing the Center's Core Values statement. ASAN chapters in five regions of the country will lead focus groups on ethics and values of the Autistic, autism, and developmental disability communities. ASAN will also develop an online survey on ethics and values. The results of the focus groups, survey, and other input will form the basis for a final report and Statement of Core Values.

ASAN is also working to develop a number of self-advocacy tools. Current self-advocacy projects include college and rural self-advocacy issues. In February, Scott Robertson presented a webinar for the Center on "Transition from Childhood to Adulthood: Perspectives from an Autistic Self-Advocate Researcher." We will also be involved in outreach and dissemination activities on behalf of the Center including participation in five Regional Summits, more webinars, and resource sharing.

ASAN Chapter Growth

by Elesia Ashkenazy

ASAN chapters are popping up all over the States! If you have a strong grasp of disability rights, self-advocacy, and neurodiversity, and you feel you have time to lead an ASAN chapter, please contact our Chapter Coordinator at [email protected].

Our chapters focus on many things including policy advocacy, such as lobbying. And civil society advocacy, such as letter writing, in addition to speaking out against offensive ad campaigns, convincing local private programs to make their practices autistic friendly, etc. ASAN chapters also focus on outreach and community service, recruitment and retention activities, local Autistic community development, and involvement in regional workshops and presentations. Also of importance is reaching out to under-served populations (e.g. newly diagnosed adults, women, homeless individuals, rural residents, etc.)

As you can see from this quarter's chapter submissions, ASAN is growing and working hard to get chapters up and running in every state--a goal that will take time to do right. That noted, ASAN relishes the opportunity!

In the News

by Meg Evans

Autism Service Dog Allowed in School

Following an investigation by the U.S. Department of Justice, the Hillsboro School District in Oregon has agreed to allow a student, Jordan “Scooter” Givens, to bring an autism service dog into his classroom. The school district had denied access for the service dog for nearly three years before a visit from federal attorneys led to a voluntary resolution of the dispute. More details here.

Schools are required under the Americans with Disabilities Act to allow service animals for individuals with disabilities. Autism service dogs are trained to recognize and distract children from potentially dangerous behavior, and they provide a calming influence that can reduce a child’s anxiety and help the child to participate more fully in school activities.

Rutgers Conference on Transportation

The Center for Advanced Infrastructure and Transportation at Rutgers University in New Jersey will be holding a conference on April 20, 2011, to discuss the transportation needs of Autistics and others with developmental disabilities. This is a free event and will focus on how educators and service providers can make information about transportation options more accessible. Click here for the conference agenda.

Enforcing the Right to Community Living

The U.S. Department of Justice is actively pursuing efforts to enforce the Olmstead ruling, which declared that people with disabilities have the right to live in the community with services and supports, rather than in institutions. Government lawyers have filed cases throughout the country and have been getting favorable court decisions and settlements. Read more here.

Creative Peaceful Approaches Needed in Psychiatry

David W. Oaks, the director of MindFreedom International, published an article on Martin Luther King Day discussing the need to create more respectful and effective approaches of providing mental and emotional support. Forced psychiatric drugging, he argues, has not resulted in improved outcomes and raises significant ethical concerns; further, it is not an effective way of preventing violence because psychiatry cannot accurately predict who will become violent and who will not. He writes:

"...there are many troubled young people with psychiatric diagnoses on college campuses who - studies show - could benefit through peer support, empowerment, and a voice about what they really need. Why not turn to those who already run such effective peer services, to ask how youth and young adult leadership can be supported as never before on campuses?". Full article here.

My Life
by Amy Sequenzia

I have many friends and they love me
I have some needs but they don’t define me
My life is a learning experience
My difficulties just a hurdle in my way

Life as you know it doesn’t always welcome me
I need certain things and I need special help
While I live in an almost silence
My brain screams inside my head

Be patient and dare to meet me
It will require you to come closer
Listen carefully, look into my eyes
I will show you how great I can be

Don’t feel sorry for me
But don’t ignore me either
Cheer for me, hope I succeed
We are together learning how to live

I dare you now to be special
I dare you to open your mind
I need help, not someone to think for me
I will give back if you only let me in -
- in a world that tries to shut me out

Chapter Spotlight

Portland
by Elesia Ashkenazy

Greetings and salutations from ASAN - PDX in Portland, Oregon! We are enthusiastic about 2011! Especially since we now have 100 meetup members--an inspiring achievement! We look forward to continuing as a strong network for Autistic adults in our local community. Our group has come up with ideas for things to accomplish this year, including plans for an art show, a self-published collection of short stories, and of course, more advocacy and public education/outreach in our state. Currently, we are working on a professional quality autism awareness poster featuring accurate and positive info about Autistic adults. Nothing About Us Without Us!

Visit us at http://www.meetup.com/ASAN-PDX/

New England
by Andrew De Carlo

ASAN New England is in the process of working with the Human Services Research Institute (HSRI) on several related initiatives. These initiatives include an Autistic-friendly homeless shelter, a community skill-sharing workshop, and an anti-bullying campaign. The shelter would be staffed by Autistics, offer payment in kind, and have tenant protections in place. The skill-sharing workshop would either be incorporated into this shelter or operate autonomously and may include time-banking and time-sharing. This skill-sharing workshop woud take the form of peer-taught life skills workshops on subjects ranging from basic life skills (cooking/cleaning/etc.) to auto maintenance and college preparation. Finally, the anti-bullying campaign focuses on reaching out to passive witnesses of bullying and empowering them to challenge and resist bullying and peer pressure for the rest of their lives.

On Jan 25, ASAN Greater Boston members met with newly-elected State Representative Paul Brodeur. They discussed several autism-related policy issues, such as vocational assistance, employment discrimination, education, anti-aversives legislation, and law enforcement training. On Feb 15, they met with State Senator Katherine Clark to discuss aversives/restraint/seclusion legislation and ASAN's opposition to the Judge Rotenberg Center. Meetings are being scheduled with State Senators John Scibak and James Timilty, as well as members of the Massachusetts House Ways and Means committee. ASAN members attended a meeting of the Boston Commission for Persons with Disabilities on Feb 23. ASAN continues to be involved with the Governor's Autism Commission as well, and regularly sends representatives to subcommittee meetings.

Visit us at http://asannewengland.blogspot.com/

San Jose
by Mark Romoser

The San Jose ASAN chapter is still getting started. Co-leader Kathryn Hedges has been recruiting people at other gatherings of Autistic people. Chapter leader Mark Romoser hopes to use his day job as a community advocate at Silicon Valley Independent Living Center to work with Ari Ne'eman, ASAN, and the National Council on Independent Living to help independent living centers better and more equitably serve Autistic people.

Mark and Kathryn attended a rally in Sacramento against budget cuts that would be devastating to California’s developmental disability services system (the Lanterman Act). They are also planning to protest at upcoming Autism Speaks “Walk Now” events.

Accepting Contributors

ASAN is dedicated to promoting education at a national level through public policy, community engagement, quality of life research and development of opportunities for Autistic people to engage others. The newsletter is one of the many ways ASAN empowers Autistics to speak out on the issues that many on the Spectrum face.

If you are, or know of, someone who is interested in reaching out to this audience, you are encouraged to contact [url=mailto://[email protected]?subject=ASAN Newsletter]Melody[/url]. There are monthly deadlines as well as other criteria. If you have any questions, please don't hesitate to ask for more information.

The ASAN: “working to end the exception in federal law which lets certain employers pay people with disabilities less than minimum wage, we need the ability to have self-advocate voices be heard.”

The Nathan: Just about a dollar late and a dollar short on that one. For years self-advocates and professionals like the director I’ve acquired has voiced outrage over this. In the three county areas where I live there is just but a select few agencies who now participate in below minimum wage facilitated employment. Now I am pushing for social awareness innovation in PR to compete with other programs and have programs compete with one another for higher then minimum wage earnings. Also changing the law for now would result in a loss of jobs thus oppression but the proper solution is PR and a good kick in the ass toward proper innovative tact.

The ASAN: “Even as recently as last year's Congressional debates on legislation to prevent abusive restraint and seclusion in schools, opponents of reform argued in favor of what they called therapeutic restraint, objecting to limiting restraint to emergency situations on the grounds that it should be considered a legitimate treatment.”

The Nathan: This issue is not easy peasy folks. ASAN began by declaring the procedure abuse enabling and was not balanced. Hell I know what folks can do when given to much power and too little oversight. The problem is not necessarily the people in charge, but the people conducting the restraints. Cross over oversight need be mandated and in shared areas cameras need to be mandated for quality assurance..

The problem with damn cameras is then other folks think big brother is watching them go to the bathroom or pick their nose. Notice I said shared areas where an individual has the right to safety and quality assurance is safety. Without the cameras the issue is not resolvable and is open ended where folks feel the Nazi’s are putting them in isolation camps. Meanwhile some of the same folks got the audacity to imply calling autism a jail sentence is for reasons of dignity toward a diagnoses label which they assume as their identity is to insulting when those who do suffer from isolation are not compassionately creatively represented for the sake of appeasement of pride and prejudice.

Enough with the small bickering and lets chop down the issues, eat them without chewing and move on to new progress as a whole. Damn distractors of progress with mountains out of mole hills for a stronger voice and without proper skill in innovative tact for mountain moving change. Advocates need new tact like a bit more audacity with the vintager and spice.

***ASAN is presenting a kind regard in trend with opposition to funding and the loss of opportunity on several issues one after the other and without depth forethought just the damn mountains from mole hills with phraseologies. ***

[youtube]http://www.youtube.com/watch?v=qHm9MG9xw1o&feature=player_embedded[/youtube]

On the one hand, I think it's great that the child in Oregon was allowed to bring his service dog to school with him. On the other hand, what would happen if my son was in his class?

My son is autistic AND severely allergic to dog dander.

i see the point about someone already geting disability being payed a bit less than minimum wage but 2.50 and hour thats outragious.you be better off not to work and get more benifits.it would be better to pay people with disabilities more and get them off assistence which would save the tax payers money which bussiness could use to hire more disabled people

The ideal world is a perfect picture of all the good and the most efficient and effective. The real world simply is not technically reasonable. Now I wouldn't want to be accused of taking anything for granted but the difference between no hope and some hope is a great much.

i can only guess that if someone making 2.50 per hr that they have goverment housing and assistance because 2.50 per hr couldnt even pay for a months rent.if however the federal law about paying less than minimun wage is only directed at people who recieve extensive govmt benifits than that ok but how could anyone live at all on nothing at all but 2.50 an hour

Yes that would make sense. Still yet a discouraging wage. Something rather then nothing.