Today's New York City hearing on the New York State Education Department's Emergency and Proposed Regulations Relating to Behavioral Interventions, aka the hearing on the use of aversives, was a heartbreaking window into the paucity of services available to our children, the unequal distribution of what services there are, and the desperation of parents attempting to cope with behaviorally challenged children.
It was also a shameless display of lobbying on the part of the Judge Rotenberg Educational Center, which apparently felt it was appropriate to bring along several young people who are still subject to the use of the center's behavior modification techniques to testify on behalf of the use of electric shock. These young people, still in the "care" of the Rotenberg Center, sang the praises of the GED (the so-called Graduated Electronic Decelerator), which administers electric shocks every three seconds, much as any prisoner testifying under threat of retribution would espouse the beliefs of his or her keepers.
It was interesting to note that the preponderance of Rotenberg students who testified that the GED had helped them stop their angry behaviors were young African American males — a group that has good reasons to be angry if employment, life expectancy, and incarceration statistics are any indication of the challenges that they face.
Similarly, the preponderance of parents speaking in favor of the use of electric shock on their children were parents who seemed not to have adequate access to other resources. Some spoke hyperbolically of the "torture" of trying to raise them — of the challenges they faced and the difficulties of finding schools and services — without addressing the fact that what these regulations propose is the state-sanctioned use of actual torture on their children.
Parents who favored the use of the GED electric shock machine spoke about not wishing their children to be an "drug-induced straight-jacket" — yet they frequently referenced older medications that are far from the optimal and most current medications for addressing aggressive behaviors. And they spoke, heartbreakingly, of children that they did not feel could be helped in any other way. I found myself wondering what sorts of supports — social, medical and psychiatric, legal and educational, if any — these families had received.
But for every parent who spoke up in support of the use of aversives, electric shock, and restraints, there were two and three parents, educators, and survivors of aversives who spoke out against them. A young woman from Long Island with Tourette's Syndrome who has started a program of youth ambassadors to explain Tourette's, spoke eloquently of the idiocy of punishing children for behaviors that they can't control. Several women spoke of ongoing psychological damage from having been subjected to the use of restraints for days on end.
And there were attorneys from the New York Lawyers in the Public Interest and the New York Civil Liberties Union to remind us of the horrors of Willowbrook in 1972 and the illegality of many of the proposed practices.
And a psychologist from the New York State Psychological Association's Task Force on the Use of Behavioral Interventions with Children spoke of how the restraint provisions of the proposed law violate federal law; how such measures could not be "safely and humanely enacted" with minimally trained staff; and that there is not adequate peer-reviewed research to support the use of aversives even if it were legal.
Nevertheless, it was a scantily attended hearing, scheduled mid-summer when the luckier among us are away on holiday. Although there were more in attendance than my late afternoon photo reveals, it was disturbing to see how few voices were raised against this practice. There was no loud protest, no locked arms, no autistic version of ACT-UP on behalf of our neurologically challenged children.
But there is still time to let your thoughts and concerns be know. Written testimony is being accepted until August 28th. Please let your voices be heard.
Keywords: autism • Asperger's Syndrome • ADHD • learning disabilities • speech-language disorders • parenting • family life • special education • child abuse • New York State Education Department • VESID • behavior modification • aversives