Missouri Advocates For Families Affected by Autism

We are a citizens action group advocating and lobbying for families that have a child with special needs. We believe that EVERY child has a right to a FREE and APPROPRIATE EDUCATION and should NEVER BE LEFT BEHIND.

Thursday, November 14, 2013

An Unholy Alliance: Autism Speaks and the Judge Rotenberg Center

Autistic Hoya: An Unholy Alliance: Autism Speaks and the Judge Rotenberg Center

An Unholy Alliance: Autism Speaks and the Judge Rotenberg Center

Trigger warning/content: Ableism, violence, murder, torture, abuse of disabled people, electric shock, aversives. 

An Unholy Alliance:
Autism Speaks and the Judge Rotenberg Center

Lydia Brown

Autistic and disabled activists, as well as our allies, have for years criticized Autism Speaks' long history of dehumanizing rhetoric about autistic people, irresponsible financial practices, and unconscionable claim to represent autistic people without including any autistic people in their leadershi— in direct contradiction to the principles of the disability rights movement. I have written numerous times on the myriad of reasons why autistic people, writ large, not only decline to support Autism Speaks but also actively condemn their goals and practices. 

Given Autism Speaks' history of damaging PSAs that exploit autistic people and our families, as well as their continual refusal to meaningfully include autistic people throughout their leadership and decision-making process, I am rarely shocked when new information arises about their projects and programs. I was not shocked at their latest PSA, an over twenty-minute-long mini documentary ostensibly about non-speaking autistic people who type to communicate, but which in reality faced sharp criticism from high-profile non-speaking autistic Amy Sequenzia, who types herself. I was not shocked at their announcement of a policy summit in Washington DC this week that will in all likelihood ignore the concerns of real autistic people about education, employment, housing, healthcare, or community living. I was not shocked (though I was deeply saddened) to read founder Suzanne Wright's message yesterday in advance of that policy summit, which once again resorted to fear-mongering language like epidemic and national health crisis, to objectify autistic people as burdens on their families or tragedies for society.

But I was shocked and profoundly disturbed by the revelation that at Autism Speaks' Walk Now for Autism in Washington DC, the city where I live, they chose to host and feature the Judge Rotenberg Center as one of their exhibitors at a resource fair.

Let me reiterate that one more time in case the prior sentence was not sufficient to jar your conscience:

Autism Speaks featured the Judge Rotenberg Center as a resource for autistic people and their families. 

Here is a scanned image of their card (you can click for a larger image) from the DC Walk's resource fair, including the Judge Rotenberg Center (#15) on the list of service providers. (Image description below the post.)

For those who may not be regular readers of Autistic Hoya, let me elaborate on the history of the Judge Rotenberg Center. The JRC, formerly known as the Behavior Research Institute, was originally founded in 1971 by Harvard-educated psychologist Matthew Israel, who studied behaviorism under B. F. Skinner. Israel opened shop in California, taking in students with significant developmental, neurological, and behavioral disabilities with a no-expulsion, no-rejection policy. His methodology of treatment was predicated on techniques called aversive interventions  slaps, forced inhalation of ammonia, food deprivation, sleep deprivation, prolonged restraint, deep-muscle pinches intended to inflict maximum pain, and long-term seclusion. One of the more disturbing practices that Israel favors is called "behavior rehearsal lessons," in which students are coerced into producing unwanted behaviors solely for the purpose of subsequently punishing them. Essentially, aversive interventions operate on the same philosophy that some people apply to animals  if you pair an unwanted behavior with a painful stimulus, the unwanted behavior will go away. 

Except in California, one of Israel's students died as a result of his "treatment" methods. The BRI was forced to relocate, and Israel settled in Rhode Island, where his abusive practices continued. In the early 1990's, Israel had a brilliant epiphany  what if he were to use electric shock as an aversive? Rhode Island's regulatory agency refused to permit the BRI to subject its residents to electric shock punishments, and so Israel moved the facility once again to Massachusetts, where it has remained ever since. The BRI invented their own device, known as the graduated electronic decelator, which is intentionally designed to be more powerful and more painful than a police taser. Students are forced to wear electrodes attached to various parts of their bodies, and whenever they engage in any unwanted behavior (anything from head-banging to flapping their hands to getting out of their seat without permission), staff press a button that causes an electric shock. When the state of Massachusetts attempted to end this barbaric practice, Israel sued the regulating agency. When he prevailed, forcing the then-Commissioner of Mental Retardation to resign, he renamed the facility after the judge who oversaw the agreement  Ernest Rotenberg. 

At least six students with disabilities have died at the JRC either directly or indirectly because of the torture inflicted upon them in the name of treatment. The former and current U.N. Special Rapporteurs on Torture, Manfred Nowak and Juan E. Méndez, have condemned the JRC's practices as torture. The U.S. Department of Justice's civil rights division has been investigating the JRC since around the time that footage of the JRC's shock treatment (link has a photosensitive epilepsy warning in addition to the trigger warning for torture) was played in open court during a civil lawsuit against the facility. The JRC is the only facility in the entire United States that uses electric shock as punishment on disabled people  a form of abuse that would readily lead to public outrage if used on convicted prisoners or animals, but that remains largely unquestioned when called "treatment" and used on disabled people instead. 

People with disabilities, family members, and community advocates have been calling for an end to the JRC's abuses for decades. I have compiled a long list of links to articles, formal reports, court documents, and videos documenting the JRC's brutal practices. Of the myriad of abuses that occur in institutional settings, the JRC's are certainly among the worst.

And yet Autism Speaks had the gall to include the JRC as a "service provider" in their resource fair at the DC Walk Now for Autism.

This is the organization that is hosting a national policy and action summit to develop a national plan on autism in Washington DC this week. An organization that explicitly and unabashedly partnered itself with the Judge Rotenberg Center. Autism Speaks' history of excluding autistic people from leadership (up through the utter absence of any autistic people whatsoever on their board in the history of the organization's existence) ought to be troubling already  and their repeated insistence on justifications for violence against autistic people murdered by family members or caregivers shocking to the conscience. This alliance between Autism Speaks and the Judge Rotenberg Center is outrageous beyond belief.

I urge policymakers and community members interested in supporting autistic people and our families to support disability rights organizations led by disabled people. It is not possible in good conscience to lend one's support to an organization that not merely siphons money away from local communities and into research that does not benefit autistic people, but actively aligns itself with a facility with a widely publicized, well-documented history of brutal abuse and torture of people with disabilities.

Those of us who are autistic deserve a national plan on autism developed with us included at the table at every step of the way. We deserve a national plan on autism that seeks to benefit us rather than harm us. We deserve a national plan on autism that condemns abuses such as those at the Judge Rotenberg Center rather than encourages complacency with those practices, let alone directly endorses them. We deserve a national plan on autism that moves away from the language of pity, fear, and tragedy, and toward achieving equality, access, and inclusion in our communities.

Autism Speaks  it is well past time for you to listen. 

(For even more irony and another healthy dose of outrage? Autism Speaks actually issued a statement explicitly condemning the Judge Rotenberg Center about a year ago, following Andre McCollins's case against the JRC going to trial. Andre, who is autistic, was shocked thirty-one times in seven hours after refusing to remove his jacket. You can read the Autism Speaks statement here. Let that irony and outrage keep building.)


Image description: Two scanned images of a hand-held printed card are side by side. The background of both is white. The front side bears the Walk Now for Autism Speaks logo, with the motto, Research Awareness, Compassion, beside the event information  DC Walk Now for Autism Speaks Saturday November 2, 2013 The National Mall, 8:30AM Registration, 10:00AM Walk Start. Then there is more text, "Walk Now for Autism Speaks is a fun-filled, family friendly event and is Autism Speaks' single most powerful force to fund vital research that will lead us to the answers we need. This is our 13th annual Walk Now for Autism Speaks event in the Washington, DC community!" Then a picture of a tend with a big Autism Speaks banner. Then "thanks to our generous sponsors" followed by a variety of foundation and corporate logos. The back side of the card bears a header that says "Please join us in the RESOURCE Fair!" and has two columns under that, one with booth number, and one labeled Service Provider. There are 34 booths numbered, belonging to various autism-related organizations, centers, or service providers. Number 15, which is at the top of the second column, is the Judge Rotenberg Educational Center. Beneath the list is a satellite image of the walk area with various stations labeled. 

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