Monday, 27 August 2012

"The Gristle in The Stew": Stories from Former Residents of Huronia Regional Centre

By the 1960s, the Huronia Regional Centre had more than 2,600 residents - 700 more than the facility was designed to accommodate - with more than 1,000 on the waiting list. Source: 'One On Every Street', an information film for families. 
I was going to post an awesome video today about a young man with autism that's living a life he loves in his community with the support of his family and a worker. But there's some more information that I want to find out first, and I came across a podcast this weekend that I found interesting. It's a bit of a time commitment (half an hour), but well worth the listen. It definitely provides some context for those that wonder why it's such an achievement that we've gotten to a place where people with developmental disabilities of all types and degrees of severity live and work and in community settings, and why advocates keep pushing for even greater degrees of community integration. For people that are familiar with the history of abuse and oppression of people with intellectual disabilities in government-run institutions like Huronia Regional Centre, parts of the podcast won't be surprising...but I've known the history for quite some time, and was definitely taken aback by some of it. Know in advance that some of it is difficult to listen to.

Huronia Regional Centre - Telling the Stories

"The Gristle in the Stew", created and narrated by David Gutnick, is largely an interview with Marie Slark and Patricia Seth. They are the two women who are responsible, with support, for launching the first of 12,000 action suits for damages against the Ontario government by people with intellectual disabilities who lived in the provincial institutions. Marie and Patricia Stem lived in Huronia Regional Centre, the largest and oldest of Ontario's institutions. Huronia Regional Centre is now closed. It was orginially called "The Orillia Asylum for Idiots" when it opened in 1876. You can hear how much the women hated and feared the place in their voices, as they're interviewed on a visit to the site.

"It was a bad place," says Patricia of Huronia Regional Centre, on the way there.

A former resident (David McKillop, also a plaintiff in a class action suit) of Rideau Regional Centre, another institution that is now closed, is also interviewed.

For a long time, parents were told that institutionalization was best option for children with intellectual disabilities who, because they were so "limited", would require full-time care and never learn to do anything for themselves.  I've seen many of the people who grew up in these institutional environments, under the "care" of staff who assumed that they'd never be able to learn any skills, go on to live semi-independently and independently once they went on to live in communities. They have jobs and friends, and participate in community activities, and what I'm sure were dark times in the institution doesn't seem to hold them back.

That really impresses me, because I'm sure that these sorts of things would hold me back if they were done to me as child:
  • Being dropped off by my family at a strange place and being told by them that I'd be there until I died (Patricia).
  • Beatings, slaps...being kicked in the groin repeatedly (David)
  • Being locked in cupboards
  • Having my head held under hot water (Patricia)
  • Being made to lie facedown on the ground for punishment and having people step on my head if I turned my face. (Marie)
  • Being turned upside down and held by my legs while water was run over my face (Patricia, who says that this felt like she was drowning).
  • Being overmedicated
  • Having all my teeth removed for "safety" reasons
  • Being sexually abused (David)
  • Being told that if I tried to report any of this, I'd be punished, and that staff would get the other kids to abuse me (Patricia)
  • Being punished by having to hold heavy pails of water in both hands for extended periods of time (David)

So Slow to Move, Even Though They Knew - Closing Huronia Regional Centre

Journalist Pierre Berton wrote a column about the conditions at Huronia Regional Centre in 1959. He wrote about the terrible overcrowding and unsanitary conditions, the stench of urine and feces in the living quarters, and his belief that Huronial Regional Centre was a firetrap. But it was another 50 years until the last residents left the Ontario institutions and all of them, including Huronia Regional Centre were closed for good.

According to the documentary, the government says that Huronia Regional Centre was managed in accordance with the standard of care at the time, and responds to allegations of abuse with "Prove it." Patricia has a made a list of the people who abused her.

Ontario's institutions are closed, but the other provinces haven't followed Ontario's lead, and there are still institutions open in the US. It's time for all of them to close. Even if they all employed all the best practices of client care for institutional care, it's significantly cheaper (with better outcomes for clients) for governments to fund people to be in community residential settings.

And institutions clearly haven't used best practices to care for people. Let's do something about this.

"The Gristle in the Stew" has already won several awards.

A post that I wrote about Willowbrook State School, an American institution for people with developmental disabilities:

More about Huronia Regional Centre:  This is a government website. Note what they do and don't talk about.

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