3/22/2012

Why Principled Positions Matter: The Judge Rotenberg Center and Autism Organizations


How a society treats the disabled, especially those in need of specialized care due to aggressive behaviors and self-injurious behaviors, says a lot about the morality and compassion of that society. Are they locked away out of sight, left to live in horrendous conditions, abandoned not only by society, but by family members as well? The United States does not have a good record when it comes to the care provided to the mentally and physically disabled. From lobotomies to forced sterilization, from electric shock therapy and restraint systems that resemble the horrors of a torturer’s chamber, we as a society have wreaked havoc on those unable to defend themselves.
And then, in an effort to make things better, we closed several institutions and placed the disabled in their communities, except that we failed to fund group homes adequately, we failed to legislate adequate training for carers, we paid the caregivers substandard wages, and we neglected to make sure those placed in the community were safe and well-cared for. In actuality, many ended up homeless, some ended up in jail, and ill-equipped families took in their disabled and did the best they could with no training, little support, and few opportunities.
Today, our society is facing an overwhelming crisis of what to do and how to help those who are disabled have equal access to society and all that being a full member of society entails: work that is fulfilling, socialization opportunities and safe living environments. Parents and families struggle to find appropriate programs from early childhood on as school districts prove themselves ill-equipped to provide for the disabled and as our children reach adulthood, we and our adult children find ourselves struggling to find workable solutions that keep our loved ones safe and allow them autonomy and satisfaction.
Some disabled individuals, faced with a past that failed to help them get aggressive behaviors and self-injurious behaviors under control, end up in jail for attacking their caregivers or carted off to various institutions until there’s no place left that will take them, except the Judge Rotenberg Center, which prides itself on not rejecting anyone. Of course, one of the hidden costs of admission is being hooked up to electrodes that will shock the individual should he engage in any behavior deemed unacceptable. In addition to shocks administered by staff with minimal training, restraints, including four-point restraints, are a favored tactic.
You would think that the stories that come out of the center would ensure its closing, but instead parents of those institutionalized there go before the Massachusetts government  and argue that the shocks are good things. And perhaps, for the parents, grown children suddenly malleable and cowed, seems like a boon. Parents go home with the shock boxes and the ability to stop their children on a dime if  they choose to act out. Who wouldn't want the ability to taser an aggressive individual, right? And that is what it's tantamount to: tasering. 
Abuse story after abuse story comes out, advocates and organizations rally and the federal justice department investigates, and yet nothing really changes. Autistic advocates and parent advocates have come together over the years, writing piece after piece, like Lydia Brown's work on Change.org  and at the Autism Education Project and Marj Hatzell's piece in The Stir. The ICAA recently wrote about the center, noting that "The GED skin shocks were created and used by the JRC to deliberately apply painful burns to the skin of people with disabilities who become students at the JRC in Massachusetts. The skin shocks are many times more powerful than that of an average dog shock collar which is universally considered abuse for humans and is controversial for use on dogs or other animals."
This should be a no-brainer for anyone concerned with the humane and responsible care and education of individuals with disabilities. It should be an easy thing to stand up and say "We stand against the restraint, abuse, and torture of the disabled." Every organization dealing with disabled populations should feel a moral imperative to do this: to stand against the Judge Rotenberg Center and its thirty year plus history of shocking clients, refusing food, restraining for hours without any kind of break for the client. 
However, that is definitely not the case. Two major autism organizations have not stood up and led the way on this issue. Two major autism non-profits have failed to stand against restraint, seclusion, the withholding of food, and the administration of painful shocks that the Judge Rotenberg Center engages in. Autism Speaks and the Autism Society have chosen, for whatever reason, to remain silent on an issue their stature and recognition among the public would certainly bring attention to.
 Autism Speaks has no official statement on the center, according to Marc Sirkin, Autism Speaks Vice President, Social Marketing & Online Fundraising. The Autism Society did not respond to a request for its position on the center and no information about Judge Rotenberg Center could be found on the society's website.
The National Autism Association stands up against the Judge Rotenberg Center. So do these organizations, who in 2009, stood up for those institutionalized at the Judge Rotenberg Center:
American Association on Intellectual and Developmental Disabilities  
Association of University Centers on Disabilities   
The Arc of the U.S.   
Autism National Committee (AutCom)     
The Autistic Self Advocacy Network     
Center on Human Policy, Law, and Disability Studies, Syracuse University     
The Coalition for the Legal Rights of People with Disabilities      
Cobb and Douglas Counties Community Service Boards              
Connecticut Council on Developmental Disabilities               
Disability Rights Education and Defense Fund               
Easter Seals            
Exceptional Parent Magazine             
Hope House Foundation                     

The Learning Community for Person Centered Practices         
The Maine Independent Media Center            
Maryland Coalition for Inclusive Education          
National Association of County Behavioral Health and Developmental Disability Directors 
National Association of Councils on Developmental Disabilities 
National Association for the Dually Diagnosed (NADD) 
National Disability Rights Network Washington, DC
The National Leadership Consortium on Developmental Disabilities, University of Delaware 
Respect ABILITY Law Center             
RHA Howell, Inc.                   
Self Advocates Becoming Empowered            
TASH             
United Cerebral Palsy          
University of Medicine and Dentistry of New Jersey, School of Nursing           
University of San Diego Autism Institute             
The Voices and and Choices of Autism            

Men and women of good conscience cannot stand quiet on this issue. Each day, disabled individuals at the center are being shocked, some for having the temerity to refuse to remain seated. When concerns about money take precedence over the absolute right of human beings to be free from torture, restraint, and abuse, the morality of society as a whole is in jeopardy.
I call upon these two organizations, Autism Speaks and the Autism Society, to take a moral stand--to speak up for the victims of the Judge Rotenberg Center, to put the weight and clout of being multi-million dollar organizations into getting the center shut down and the aversive shocks outlawed permanently. 
Don't let a handful of parents arguing before the Massachusetts government for the continued abuse of their children keep you, Autism Speaks and Autism Society, from speaking out and helping to put a stop to this. Don't let the fear of offense to those who would line your coffers keep you silent.  
To fail to speak, to fail to act, to fail to show compassion and respect for the rights of these individuals who find themselves consigned to the bizarro world of the center with its opulent reward centers coupled with abusive, painful shocks, some of which come by the dozens, is to fail humanity utterly.
To be at the forefront of the autism community, to wield fiscal power, demands integrity of the highest order. Failing to speak out against acts like those that happened to Andre McCollins is simply unconscionable. 

2 comments:

Roger Kulp said...

You know,I really cannot see how it is,that anybody who cares about the human rights of autistic people,or disabled people as a whole,would want to dump them in a group home,or institution,as a lot of the antivaxers often do.I had to fight doctors,and psychiatrists for years who wanted to do this to me.

I know you,and a lot of the other neurodiversity people who say they are concerned about the rights and happiness of autistic people are not that concerned about those whose autism may be due to a real,genetic disease,with lots of medical comorbids,like treatable seizures,which in my case,led to my eloping and head banging.

Great blog post though.

This has been a long,hard five years for me now that I finally tried to take advantage of all the advances in medicine and autism,and find a cause for all this stuff.There have been one false lead and hope after another.One disease after another that I was told they were certain I had,all metabolic.Only to have more tests.and find out I didn't have this disease after all.I now know I did not have a metabolic disease.I have an AUTOIMMUNE disease,one that is both unique to ASDs,and was not known to exist until 2007.It is called autoimmunity of the folate receptors.The developmental psychologist who diagnosed my Atypical Autism is now very interested in this,and may well start to test many others.He was one who suggested I go into a group home.Things like the arthritis I have had since I was ten years old,are going away because I have greatly upped my dose of Leucovorin.

My point is every person with autism has the right to know if their condition is due to a known genetic disease,and if it can be treated.And as I prove,it can be done at any age.It does not happen in group homes or institutions.Only if you live with loving,and supportive family members.In my case,my mother.

I will come back to see what you say.I'll send some pictures of a couple of my best bonsai.My pear was badly damaged when we had the 70-75mph winds last week.

K Wombles said...

No one has accused me of being in the neurodiversity movement in a long time--in fact, I've been excommunicated, didn't you know?

I don't know why you think I'd have any issue with individuals with comorbids having genetic testing--or why I'd be against it at all. Bobby's been through extensive genetic testing.

Why on earth would I want people suffering from illnesses to not get the testing and treatment they need in order to feel better?

Have you forgotten that I have several health issues that compromise my ability to function pain free?