From victims to advocates: People with developmental disabilities are changing the health-care system

This episode was originally broadcast on November 16, 2019.

Patient adviser Victor Pereira has a key piece of advice for health-care workers who care for people with developmental disabilities: "Include us in the conversation."  

Pereira is one of the 315,000 Canadians 15 years of age and older who identify as having a developmental disability.

The 25-year-old is also one of three patient advisers in a new program with the Azrieli Adult Neurodevelopmental Centre at the Centre for Addiction and Mental Health in Toronto. These advisers share their experiences with medical school students, resident psychiatric doctors and other health-care workers. 

"If you respect us and you want to talk to us, we'll show you the same respect. Just make us feel welcome. Just include us in the conversation," Pereira told White Coat, Black Art.

It's important for health workers to talk directly to people with developmental disabilities, he said.

"It's all about breaking down barriers and making sure doctors and patients really understand each other."

Dr. Yona Lunsky director of the Azrieli Adult Neurodevelopmental Centre, says the patient adviser program is about treating those with developmental disabilities as equals.

"We don't put people with disabilities on display. They co-teach with us," she said.

Lunsky says that the patient advisers have "spoken to psychologists, social workers, occupational therapists, and psychiatrists. Outside the hospital, they're working with family doctors and nurses." 

They're also involved in reviewing CAMH's research consent forms to make sure they are written in simple language easily understandable to those with a developmental disability.

The goal is to "give them the voice to educate other people with disabilities and other health-care providers," said Lunsky.

A history of 'mistreatment, abuse and punishments'

The program is a far cry from the days when people with people with developmental disabilities had little say in how they were cared for.

For much of the 20th century, people with developmental disabilities were typically institutionalized, often in substandard conditions.

In 2013, the Ontario government officially apologized to former residents of its provincially-run institutions and announced a $35-million settlement to surviving victims. 

When the Huronia Regional Centre in Orillia, Ont., was first opened in 1876, it was called the Orillia Asylum for Idiots. It housed tens of thousands of patients until the province shuttered its doors in 2009.

Madeline Burghardt, professor of disability studies at York University, has interviewed many survivors of that institution, chronicling their stories in a book titled Broken: Institutions, Families and the Construction of Intellectual Disability.

"Some of the people I spoke with shared some really hard stories about things that happened to them," she said.

"Some real mistreatment, abuse and punishments — lots and lots of punishment. A lot of them spoke of the overall atmosphere of regimentation, lack of choice, lack of privacy and in lots of cases, violence."

'Our definitions of disability have shifted'

Christopher spent 13 years at the Huronia Regional Centre. Now 81 and living independently in Brantford, Ont., he says he vividly remembers being physically and sexually abused by staff.

"They used to use straps in those years. I didn't like that," Christopher said. "I'm not going back there. It'd be awful." White Coat, Black Art has agreed to withhold his last name to protect his privacy.

His experiences were typical of a patient at Huronia Centre, said Burghardt, who added that little to no therapy was provided in the institutions, in favour of being "housed" in a prison-like environment.

"Survivors spoke about this atmosphere of violence where you had to be really careful. They were always on edge afraid that they would be punished for something, if they acted in a certain way or if they spoke back to someone who was working," Burghardt said.

"Nowadays we find that almost unbelievable that a child who is born with Down syndrome would end up living in an institution … That's a good example of how our definitions of disability have shifted."

Lunsky hopes that shift will continue.

"Instead of ignoring their perspective, we are working with them, and learning how to support them better through health care," she said.

Written and produced by Jeff Goodes.