FDA to Ban Electrical Stimulation Devices used at Judge Rotenberg Center – Public Comment Invited

Two years after a federal advisory panel met to discuss the Judge Rotenberg Center’s use of electrical stimulation devices in behaviour modification protocols, the Food and Drug Administration has announced its intent to ban the devices. This is something a lot of people (including a past employee of the Judge Rotenberg Center) have been waiting  a long time for.

Content Warning: Torture, Abuse, Aversive Skin Shocks

"JRC" in navy letters behind a red circle with a slash through it. Underneath. in black letters: "STOP The Torture! Close It!" Keyword: Judge Rotenberg Center

Image Description: “JRC” in navy letters behind a red circle with a slash through it. Underneath. in black letters: “STOP The Torture! Close It!”

***

The Judge Rotenberg Center is a facility for children in adults with developmental disabilities. It is located in Canton, Massachusetts, and has been open since 1971. It employs a number of controversial behaviour modification practices, but the most controversial by far is the use of aversive skin shocks delivered via devices called Gradual Electronic Decelerators in response to self-injurious or aggressive behaviour. Judge Rotenberg Center is the only place in the United States that still uses aversive skin shocks to condition behaviour.

Judge Rotenberg stands by its use of aversive skin shocks as an alternative for individuals for whom no other treatment is working, and insists that individuals and their families depend on it. But significant questions surround the use of the practice:

This is just a partial list. For more, read my last post on the Judge Rotenberg Center or visit Lydia Brown’s blog.

The meeting of the federal advisory committee about the Gradual Electronic Decelerators and the aversive skin shocks was a chance for both those for and against their use to make a thorough case. The meeting was in front of the FDA, in order to help them make a decision about the GEDs and the use of aversive skin shocks.

Click here to read the transcript of the FDA meeting, including testimony by autism activists Lydia Brown and Ari Ne’eman

This 126-page report also came out of the investigation into the GEDs and use of aversive shocks.

Judge Rotenberg Center – If I Had My Way…

Even if you haven’t read my past writing about the Judge Rotenberg Center, if you know anything about me I think you can likely predict where I come down on the use of electric shock as behaviour modification on anyone. I’m not an expert on conditioning, but I know enough about it…and behaviour modification programs…and basic human rights and ethical treatment, for God’s sake…that I know that even when there seems like no other alternative, delivering a skin shock to get a person to stop an “undesired” behaviour is totally unacceptable from an institution that claims to be providing support services.

Totally fucking unacceptable and something that we should not be condoning implicitly or explicitly. I’d love to see the Judge Rotenberg Centre closed down tomorrow, and think it should have been closed down years ago.

Seeing them get their electric toys taken away?

It’s a damn good first step.

The FDA Wants to Hear From You

On April 25, 2016, the FDA issued its Proposal To Ban Electrical Stimulation Devices Used To Treat Self-Injurious or Aggressive Behavior.   The Summary states:

The Food and Drug Administration (FDA or we) is proposing to ban electrical stimulation devices used to treat aggressive or self-injurious behavior. FDA has determined that these devices present an unreasonable and substantial risk of illness or injury that cannot be corrected or eliminated by labeling. FDA is proposing to include in this ban both new devices and devices already in distribution and use.

This is not an official ruling. It’s a proposed rule that outlines why the FDA wants to bans electrical shock devices, and it’s very thorough – definitely worth reading, especially since the FDA is inviting public comment on the proposed ruling until May 25, 2016, with a specific request for comment on their proposed effective date. Comment can be provided in a variety of formats, and information on how to submit comment is listed on the Proposal.

If you have an opinion on this issue, now is the time to make it known! Remember, the Judge Rotenberg Center is presently the only entity affected by this ruling – when the electrical stimulation devices are banned, the facility cannot use them anymore. Ever.

Speak your mind to the FDA, and let’s get this chapter closed.

Save

Attawapiskat Needs Help

The community of Attawaspikat in Ontario, Canada, is in a state of emergency. Since September 2015, over 100 Indigenous people have attempted suicide, one of them just 11 years old. Eleven of those occurred in the early hours of Sunday, April 10, 2016.

The suicide attempts have put a chronically troubled community in the news once again.

Content Note: Suicide, Suicide Wave, Racism, Residential Schools, Intergenerational Trauma, Politics, Poverty

Stretched leather sign against blue sign says "Wacheeya Welcome to Attawapiskat First Nation". There is a silhouette of a howling wolf on the sign. Keyword: Attawapiskat

Image Description: Stretched leather sign against blue sign says “Wacheeya Welcome to Attawapiskat First Nation”. There is a silhouette of a howling wolf on the sign.

***

 

Canada’s Indigenous peoples have struggled with significantly increased suicide rates when compared to the non-Indigenous population for quite some time.  The Guardian reported in an article about Attawapiskat’s current suicide crisis:

“Across the country, suicides and self-inflicted injuries rank as the leading cause of death for First Nations people younger than 44. For First Nations youth, statistics are even more bleak: suicide rates for young First Nation males are 10 times higher than for non-indigenous male youths. For young First Nations women, the suicide rate climbs to a staggering 21 times that of their non-indigenous counterparts.”

This isn’t the first suicide wave in Attawapiskat or in Indigenous communities like it, and it certainly won’t be the last if the government’s response is to fly a bunch of crisis workers in for just 30 days. Certainly not in Attawapiskat, where the people are living in 3rd world conditions.

Life in Attawapiskat

In 2011, there was a state of emergency declared in Attawapiskat not for a suicide wave, but for a lack of housing.  When politicians paid a visit to Attawapiskat in November of 2011, they found families living homes full of black mold without electricity, plumbing or heat. Residents burned fires in half-barrels to keep themselves warm – a considerable safety risk, especially considering the overcrowded conditions:

“…upwards of 20 people living in three- and four-bedroom homes, where each bedroom housed entire large families.”

Trailers that were donated as temporary shelters by the nearby community of DeBeers in 2009 had become permanent dwellings.  People lived in tents and sheds, and there were hundreds of people with no homes at all. Read more here about Attawpiskat’s housing crisis in 2011 and more here about the crisis at the end of 2015.

After seeing the state of the community, Ontario’s Ministry of Indian and Northern Affairs promised to retrofit 15 abandoned houses to make them livable, but Charlie Angus (Member of Parliament at the time) said that the money the government was making available wouldn’t allow that. “If these conditions were faced by tenants anywhere in Southern Ontario there would be charges laid against the landlord, who in this case is the federal government ,” Angus told The Timmins Press.

The legacy of substandard living conditions in Attawpiskat also includes:

There are more reasons why Attawpiskat finds itself in the situation it’s in. It’s “up North” and isolated. Unemployment and poverty rates are high. Its supplies must be brought in, and people in medical emergency must go to larger communities. The winters are dark and very cold. Writer Joseph Boyden, in a recent article in Maclean’s Magazine, talks about how, on his first visit to Attawapiskat, he considered smuggling in some alcohol to help keep him warm, breaking the community’s “no alcohol” rule.

Intergenerational Trauma and Residential Schools

In the same article, Boyden also talks about the  idea of intergenerational trauma and its link to Indigenous communities  like Attawapiskat and Canada’s indigenous peoples in general, focusing on the brutal 140-year history of Canada’s residential school system. These schools housed 150,000 indigenous children ripped from their families.

I know the basics about the residential schools. I’ve heard horrible stories of abuse, similar to the ones that I heard went on in Ontario’s institutions for intellectually disabled. I knew that, like the in the institutions, the students that died in the residential schools were buried in unmarked graves. I remember  hearing a story in a CBC radio documentary about a young girl’s experience in a residential school that horrifies me to this day, left me reeling when I thought I could no longer be shocked. I can’t talk about it.

Boyden talks about the worst memories of two of his friends who were residential schools (the last one only closed in 1996): one talked about being dragged out of bed in the middle of night to be raped repeatedly, and one missed the experience of loving physical contact as she was growing up – hugs from her parents.

I didn’t know these things about the residential schools, which I read in Boyden’s article:

  • One of the central architects of the schools, Duncan Campbell Scott, repeatedly stated that they were designed with the intention of “getting rid of the Indian problem” and used the phrase “the final solution” decades before Hitler did, in reference to the schools.
  • Apartheid was designed after a South African delegation visited Canada and viewed the residential school and reservation system.

“You can’t attempt cultural genocide for 140 years, for seven generations…and not expect some very real fallout from that. Attawapiskat is a brutal example.” writes Boyden.

Ontario Regional Chief Isadore Day agrees with Boyden:

“The ills plaguing aboriginal Canadians can be traced back to the Indian Act of 1876, which is marking its 140th anniversary…The act, which effectively transferred all decisions affecting First Nations to officials in Ottawa, set the stage for decades of turmoil, including residential schools. Those experiences are at the heart of issues that include addiction, poor health and unemployment.”

Solutions for Attawapiskat

Boyden believes that education for the children and youth of Attawapiskat and other reserve communities as central to the strategy that will save them. Not the education that the Indigenous children and youth currently receive, but one that is:

  • Funded to the same level as that of non-Indigenous children and youth receiving their education in schools off-reserve.
  • Grounded in a curriculum that builds not only academic skill but cultural identity, building self-esteem through “a pride in self and community.”

Attawapiskat has a high school. In 2012 the drop-out rate was more than 50%, and some students, like education advocates Shannen and Serena Koostachin, leave the community to pursue secondary education. Today Attawapiskat has an elementary school, but elementary students were educated in portables for 15 years after the former elementary school closed in 2000: ” Both soil and groundwater showed evidence of benzene, ethylbenzene, toluene, xylenes and TPH (total petroleum hydrocarbons from gas and diesel) above acceptable levels for human health. Later, construction consultants checking the building also found five species of mould in classrooms and corridors.” Read more about the contaminated school, built in 1976.

In 2008, Minister of Indian and Northern Affairs Canada Chuck Strahl announced that Ottawa would not fund a new elementary school. He later relented, and construction began on a new elementary school in 2014, but not without activism on a national scale from Shannen Koostachin. She was killed in a car accident at age 15. In this video, Shannon and Serena address the Ontario Labour Convention in 2009:

Boydon writes:

“Let’s first agree to begin with actually investing just as much in our First Nations, Inuit and Metis youth as we do in every other group of youth across this country. It is simple logic. If there’s one thing I know as deeply in me as I know anything, I too would have been one of these brutal suicide statistics we hear about far too often, if it hadn’t been for the resources available to me to continue my own education in its different forms. This is a right for all youth in our country, not just those who happen to live in more urban places.”

Isn’t it a beautiful idea, that education is the right of all children in our country? That every child is worthy of the investment of education dollars to assist them to reach their full potential? That children should be encouraged to take pride in self and the community of others like them, even when society tells them otherwise?

Where have we heard this before?

Attawapiskat, Oppression and Parallel Paths

It’s interesting to see how even though there are specific experiences of oppression that members of different groups will never understand, there’s a universality behind the experiences that binds what can be very different groups together. Former Prime Minister Jean Chretien said recently, in response to Attawapiskat’s turmoil, that it would be easier to help if the residents just moved further south (much easier than it sounds, given that Attawpiskat is accessible only by ice road and by air), and in his words I heard:

  • “It would be much easier if you learned to communicate more like non-autistic people”
  • “It would be much easier if you got a cochlear implant”
  • “It would be much easier if you worked harder not to be so reliant on your wheelchair.”

“It would be much easier for us to help you if you would just become more like us.”

That’s unacceptable. True support isn’t contingent isn’t contingent on giving up self-identity, which for the people of Attawaspikat is tied to the North and its land. True support is about meeting people where they are, not where we want them to be.

Attawapiskat’s story pulls at me because what’s happening there should not be happening in Canada, the politicians have known about it for a long time, and it seems like no one wants to help. But something else grabs me. There’s a universality to the experience of oppression, even when the specifics of the oppression are very different between groups, and in the stories of other oppressed groups in Canada is Attawapiskat’s story – people who want the rights, freedoms and opportunities granted to all Canadians, struggling to live in the face of almost insurmountable barriers.

The difference right now between the Indigenous people of Attawapiskat and other oppressed peoples in Canada is that while other groups are asking for help, Attawapiskat is screaming for it, and the bottom line is that it’s not right to ignore the kind of hopelessness and suffering that causes 5% of any community’s population to attempt suicide in less than a year.

We need to insist that our politicians do the right thing, fellow Canadians. Enough is enough.

 

 

 

Save