Action Items for New Jersey Residents

The New Jersey Adults with Autism Task Force is currently conducting an informational survey to determine how the state can better provide services. The survey includes responses from autistics, parents, and others. Most of the responses received to date have been from parents. Although parent responses can be helpful, it is also important for self-advocates in New Jersey to respond to the survey to ensure that the concerns of autistics are represented sufficiently. Here is the link:


http://www.surveymonkey.com/s.aspx?sm=x33lcx4bxbMZ6Bwm55ApOQ_3d_3d


In addition, New Jersey is considering legislation that would close most of its institutions and provide funding for people with developmental disabilities to live in their communities. The Autistic Self Advocacy Network has issued a statement, reposted below, asking New Jersey residents to write to their state legislators in support of the bill.


Hello,

As many of you recall, earlier this month we worked with NJ Assemblyman Louis Greenwald and NJACP to introduce legislation which, if passed, will close five of New Jersey's seven institutions and shift the funds into community services. This effort has the potential to empower thousands of individuals with developmental disabilities, including many autistic adults, to live in the community. You can see a press conference announcing the legislation here, the bill text here and an endorsement from the New Jersey Star Ledger and the Philadelphia Inquirer here and here. This bill is an extremely important step towards ensuring a future with quality of life for thousands of adults with developmental disabilities living in New Jersey. Currently, the state ranks near to last in the country in regards to community services for adults with disabilities and uses institutions at one of the highest rates of any state. New Jersey ranks 49th out of 50 in terms of the average number of individuals segregated into institutions yet also ranks 40th out of 50 in terms of the amount of money allocated to community services funding. Click here for a comprehensive briefing paper on why A3625 is so important, providing supporting data, facts and analysis explaining why A3625 will lead to a better life for adults with developmental disabilities in New Jersey.

Ten years after the Olmstead v. L.C. decision ruling that people with disabilities have a right to receive services in the community rather than in segregated institutions, we still have a long way to go. No one should have to live in an institution. Today, we as a society possess the ability, the expertise and the sense of justice to end this system of segregation. In order to do that, we need your help. This action alert will use your zip code to send your letter supporting A3625 directly to your state legislators. Unfortunately, only New Jersey zip codes apply. If you live in New Jersey and are unsure as to your zip code, feel free to look it up by going to this link.

Please help support this effort by posting this message to your mailing lists, blogs, websites and other distribution mechanisms. Together we can empower people with disabilities everywhere.

Nothing About Us, Without Us!

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


Although much more can—and should—be done to protect the civil rights of people with developmental disabilities and to enable the most disadvantaged to speak on their own behalf, this legislation is a significant step toward community inclusion. I urge New Jersey residents to take the time to respond to this action alert and, in the future, to keep a watchful eye on state legislators to ensure that more progress will be made.

Destroying the Intolerance Monster

A charity in the UK called Action for Children has created a truly appalling short film called Dan's Story, which is being shown on TV as an advertisement. It depicts a boy as having been eaten by a wicked autism monster and suggests that the monster must be destroyed. Several bloggers already have written about this horrid imagery, including Mike Stanton, Socrates, Bev, Sharon, and Shiva.

Socrates posted contact information on his blog for Gary Day, Head of Supporter Care at Action for Children: gary.day@actionforchildren.org.uk

Unfortunately, it appears that Mr. Day does not understand (or perhaps does not care) how grossly offensive this advertising campaign is to the autistic community. His mass-mailed response to our complaints, which is posted in Socrates' comments, asserts that the ad is acceptable because "Dan tells his own story in his own words," and goes on to say that anyone who does not like it can complain to the UK's advertising standards authority.

The dismissive tone of his message strongly reminds me of the mass response sent out by Dr. Harold Koplewicz of the NYU Child Study Center a few days after the Ransom Notes protest began. Dr. Koplewicz also claimed that he was just trying to raise awareness and help children. Less than two weeks later, after thousands of blog entries and protest e-mails, a joint letter prepared by ASAN and signed by thirteen other disability organizations, and media coverage, Dr. Koplewicz conceded defeat and withdrew the advertisements.

During the campaign against the Ransom Notes ads, contact information was posted for prominent NYU Child Study Center donors, and protest letters were copied to these donors so that they would understand the harm that was being done with their money and would put pressure on NYU to withdraw the ads. The same thing needs to be done here. I am not familiar enough with British job titles to know exactly what a "Head of Supporter Care" might be (and would appreciate it if my British readers would enlighten me in the comments). If supporters are the same as donors, and if Mr. Day's job consists of keeping them happy so that they will give more money, then the next logical step would be to post e-mail addresses for the charity's main supporters and make them as unhappy with the charity's actions as possible (if you have such info, please post it here). A joint letter signed by several UK disability rights groups, similar to what was done with Ransom Notes, would also help, with media coverage if possible.

As for the argument that the ad came from Dan's own words, I recommend reading a post on Ballastexistenz entitled Why Students Praise the Judge Rotenberg Center, which describes in detail how children with disabilities can be conditioned (brainwashed) to think of themselves as unworthy of having any say in their own lives and to make only positive statements about their caretakers, no matter what is done to them.

We can destroy the intolerance monster. The campaign against Ransom Notes shows exactly how to do it. Let's get busy.


Edit, January 26: ASAN has set up an Action Alert on Change.org, which provides a basic template for letters protesting these advertisements and automatically sends them.

An extensive list of contact information for corporate supporters, etc., can be found on Socrates' blog.

Alison Tepper Singer Grows Up

Be careful what you wish for
'Cause you just might get it
You just might get it...

— The Pussycat Dolls, When I Grow Up


Last week, Alison Tepper Singer resigned from Autism Speaks, leaving a high-profile position as the organization's executive vice president of communications and awareness, because of what she describes as a difference of opinion regarding vaccines. She claims that she left voluntarily, standing on principle and defending the cause of science, because she was opposed to wasting money on vaccine-related research after many studies had shown no link between vaccines and autism.

Perhaps she did indeed choose to leave, or perhaps—in light of her history of strong support for genetic research—the Wrights decided to give her the boot so that they could attract more donations from those in the anti-vaccine camp. To put it more bluntly, the Wrights appear to be trying to bamboozle the anti-vaccine folks by making a few vague promises of research into vaccine safety, while their eugenic steamroller continues merrily on its way. I expect we'll never know the whole truth, but it seems likely that her departure may not be as voluntary as she asserts.

Here's the lesson that I hope she takes away from all this:

When you work in the pity industry, for an organization that is so totally devoid of ethics that it sees nothing wrong with using fantasies of child murder for marketing purposes, then you shouldn't be surprised when—after getting more public attention than you ever really wanted to have—you end up getting thrown under the bus just like your kid.

Merryl Tisch, Distinguished Torturer

Education Update magazine has made plans to host a second New York Citywide Special Education Conference on Saturday, February 28, 2009. The conference is also sponsored by Hunter College, NYU, and District 75. The agenda includes the presentation of a "Distinguished Leader in Special Education" award to Merryl Tisch, the vice chancellor of the New York State Board of Regents.

In her capacity as the head of the Board of Regents' VESID (Vocational and Special Education for Individuals with Disabilities) Committee, Tisch bears responsibility for the infamous "emergency regulations" adopted by the Board of Regents in June 2006, which authorized aversive behavioral interventions, restraints, and seclusion to be used on students with disabilities. Wrightslaw listed the aversives authorized under these regulations as follows:


* noxious, painful, intrusive stimuli or activities intended to induce pain such as electric skin shock, ice applications, hitting, slapping, pinching, kicking, hurling, strangling, shoving, deep muscle squeezes
* noxious, painful or intrusive spray, inhalant or tastes
* withholding sleep, shelter, bedding, bathroom facilities or clothing; withholding meals, limiting essential nutrition or hydration
* movement limitation used as a punishment, including but not limited to helmets and mechanical restraint devices
* placing a child unsupervised or unobserved in a room from which the student cannot exit without assistance


"Strangling" was not a typo… and it's no coincidence that "electric skin shock" was the first item listed. These regulations were passed after an investigation of the Judge Rotenberg Center was conducted in April and May of 2006 by the New York State Education Department. After the report describing the investigation's findings proved to be highly critical of the JRC's practices, including its use of shock devices and other aversives on children with disabilities, Merryl Tisch and other supporters of the JRC took "emergency" action to ensure that students from New York could legally continue to be sent there.

Thereafter, in September 2006 and again in October 2006, Tisch along with other Regents voted to extend the regulations. Although a public outcry led to the removal of the most egregious language, such as "strangling," from the regulations, New York still allows the use of unlimited restraint and seclusion as a result of Tisch's efforts. The head of the NYS Assembly Health Committee compared the situation to Abu Ghraib in a letter asking the Regents to do the right thing. His request, along with others from major civil rights and disabilities organizations, was rebuffed.

In short, if Tisch deserves any official recognition for her "distinguished" career in special education, a tribunal investigating her for crimes against humanity would be more appropriate for her "distinguished" accomplishments. Letters, e-mails, and telephone calls protesting this shameful choice for the award should be directed to:

Dr. Pola Rosen
Publisher and Editor in Chief
Education Update
695 Park Avenue
Suite E1509
New York, NY 10065-5024
Tel: 917-375-0497
Fax: 212-772-4769
ednews1@aol.com

Carley Fighting Autism

More news from the Quisling-watch front: The autistic community's most notorious collaborator, Michael John Carley, who apparently has never seen a speaker's fee or a scrap of publicity that he wouldn't stand up on his hind legs and beg for, will be giving a presentation Monday evening as part of an autism web conference series for "parents, teachers and professionals." There's no mention of autistics in the intended audience, which is not at all surprising, given the fact that the sponsor is a group called "Moms Fighting Autism."

Here's the URL:

momsfightingautism.com/teleseminar

As they say in the courtroom: Res ipsa loquitur—the thing speaks for itself.

Advocacy: the Good, the Bad, and the Ugly

Here's a brief roundup of a few items I've noticed recently in the news, related to autism and disability advocacy.

The Good: Disability rights organizations are continuing to make themselves heard, through well-orchestrated presentations to Congress and the Obama administration, regarding policy decisions. The National Disability Rights Network presented Congress with a report documenting the abuse of children in the schools by means of restraint and seclusion, and advocating specific policy changes to protect children with disabilities. Also, a coalition of disability rights organizations sent an expansive list of policy recommendations to President-elect Obama. Both of these initiatives were supported by the Autistic Self Advocacy Network.

The Bad: As blogged by Bev on Asperger Square 8, a British newspaper, the Daily Mail, has printed an article advocating eugenic abortion of autistic children because they supposedly wreck their parents' lives. The Mail is an infamous bigoted rag and not to be taken seriously; however, the article got a large number of disgusting comments from people who agreed with it.

The Ugly: The Academy of Motion Picture Arts and Sciences has decided to give its Jean Hersholt Humanitarian Award at the Oscar Awards ceremony in February to — Jerry Lewis. Yes, that Jerry Lewis, the misogynistic, gay-hating, narcissistic slimeball who has been pissing off disability rights activists for the past four decades with his annual Muscular Dystrophy Pityfest. About two thousand people already have signed an online petition protesting that abominable choice.

Making Policy the Right Way

Although President-elect Barack Obama has not yet taken office, he already has begun to make good on his campaign promises to consider a wide variety of viewpoints and to empower people with disabilities. The Obama transition team's disability coordinator, Kareem Dale, met last Friday with six advocacy organizations, including the Autistic Self Advocacy Network, to discuss autism policy issues. The new administration is seeking to identify high-priority issues within the autism community.

As our new president prepares to take office in these difficult times, with so many urgent matters that require his attention, it is heartening to see that he recognizes the importance of consulting with autistic self-advocates as essential stakeholders in the development of policy on autism-related issues.

Autism Blogging on Change.org

The social networking site Change.org, which was created to enable people to take effective action for social change as citizens of the world, asks its members on its home page "What do you want to change in the world?" The site contains blogs that address many important issues of modern society.

A blog featuring autism issues was recently added to the site. The Change.org management, aware of the importance of empowering minorities and people with disabilities to speak on their own behalf, interviewed several autistic bloggers for the position and hired Dora Raymaker, who is a board member of the Autistic Self Advocacy Network and a co-director of the Academic Autistic Spectrum Partnership in Research and Education. She is part of a team with prolific parent blogger Kristina Chew.

Change.org deserves some hearty New Year's cheers for recognizing that it would be a good idea to include an autistic blogger's perspective in the public dialogue about autism.