“I don’t want to remember it,” Hugo Unruh says of the grim spring day in 1972. Unruh and his wife at the time pulled onto the grounds of the Manitoba Developmental Centre (MDC), a 40-hectare complex an hour west of Winnipeg that then housed 1,000 people with intellectual disabilities. They were dropping off their 13-year-old son Nick.
“I just about died when I saw it,” Unruh says of the stark 30-bed dorm room that would end up being his son’s bedroom for the next 15 years. “My wife was in tears,” says the retired United Church minister. For various reasons, they were simply not able to care for Nick, who has cerebral palsy and complicated medical needs.
The story of the Unruhs and of MDC speaks to a lingering history of societal treatment of people with intellectual disabilities. It is a history that is anguished and sometimes awkward. Over its 124-year history, MDC has been called the Home for Incurables, the Manitoba School for Mentally Defective Persons and the Manitoba School for Retardates.
Former residents speak of physical abuse, hunger, absence of privacy, lack of personal choice, a climate of fear and solitary confinement as a form of punishment. Former resident David Weremy told me how he once informed his mother of abuses he witnessed. After his mother asked staff about it, Weremy was locked up in solitary. Weremy ultimately ran away from MDC. The 2008 National Film Board-sponsored documentary, The Freedom Tour, recounts many similar stories.
An Ontario judge recently approved a $67-million payment to survivors of the province’s last three MDC-like institutions, which closed in 2009. Premier Kathleen Wynne issued an apology to residents and families who were “deeply harmed and continue to bear the scars and the consequences” of the facilities. “Their humanity was undermined,” she said.
As recently as 2006, about 3,800 people with intellectual disabilities lived in 31 large facilities across Canada. Today there are about 430 people, divided between MDC and the St. Amant Centre in Winnipeg. The Alberta government is in the process of closing its last large residential buildings at Michener Services in Red Deer, and Saskatchewan says it will close Valley View in Moose Jaw by 2016. That leaves only Manitoba stranded on the wrong side of history.
‘Warehousing’ is not acceptable
Two national organizations – People First and the Canadian Association for Community Living – lead the de-institutionalization push, saying “warehousing” of humans is simply not acceptable. But it’s complicated. Family members of residents at Michener are fighting hard to keep it open. People who have loved ones in MDC have responded harshly to public calls for the closure of MDC.
Unruh knows the complexity. As difficult as it was for his son to be in MDC, it was an improvement over Nick’s previous placement. There, he was “so medicated he couldn’t hold up his head.” MDC staff reduced his meds and taught Nick to communicate using a system of symbols, something that transformed his life, and, ironically, allowed him to communicate his dislike for MDC.
Driving Nick back to MDC after his visits home to Winnipeg was a sombre task. He didn’t want to go. Since 1987, Nick has lived at a group home in Winnipeg. Hugo and his wife Carol (who he married in 1985) host Nick every weekend and are an intimate part of his life.
Unruh says he sympathizes with people who have loved ones in MDC and chose to keep them there. He understands the emotional stakes. Families whose loved ones have spent decades in these places presumably do not want to feel like they have done wrong by allowing this. Their concern must be applauded and given close attention.
The stakes for people who suffered abuse in institutions are equally high. They deserve to see a clean break from that era. The knowledge that these institutions still exists consumes people like Weremy. Society owes these people a generous measure of healing.
And it owes an equally generous measure of grace to current residents and their families. Many families say the institutions should remain open because many residents have lived in the facilities for decades so a move would be traumatic; and because medically fragile residents cannot be cared for elsewhere.
Advocates for closing the facilities point out that thousands of people have been successfully transitioned from large institutions to group homes or individualized settings. A Brock University study found that 93 percent of families studied following the last round of closures in Ontario “reported they were satisfied with the placement” of their loved ones. Experience and studies also show that medically fragile people can be well cared for in community settings.
The church’s role
The Brock researchers made recommendations that focus not on whether community living is preferable to institutional life – that is no longer a question in most of the country – but on how to maximize the chances of smooth, gentle transition. Careful, proactive, and highly individualized planning are key recommendations.
Where does the church fit in? I have found no evidence of church groups speaking out on this topic, though various faith-based organizations provide services for people with intellectual disabilities. An important and difficult reconciliation is happening with respect to the societal place of people with intellectual disabilities. The church should be there to provide accompaniment, practical support, wisdom and perhaps conflict resolution services.
In a 2010 interview, renowned ethicist and author Margaret Somerville, said: “You test the ethical tone of a society by how it treats its weakest, most in need, most vulnerable people.” That is the opportunity before us.
Boy in the Moon
The brilliant former Globe and Mail features writer Ian Brown wrote a candid and raw 2009 book about his own profoundly disabled son, Walker. The Boy in the Moon: A Father's Search for his Disabled Son (theglobeandmail.com/boyinthemoon) won two major literary prizes worth $65K. This New York Times review of the book (nytimes.com) gives a taste of Brown's heartbreaking brilliance.
Watch the trailer (youtube.com) for the 2008 documentary The Freedom Tour, which tells the story of survivors of institutions for people with intellectual disabilities. This film sparked my interest in this topic.
Orillia Asylum for Idiots
That was the original name of the first large institution for people with intellectual disabilities in Canada, according to the Government of Ontario website (mcss.gov.on.ca/en/dshistory). It opened in 1879 and closed in 2009, when it was called the Huronia Regional Centre. See archival video (mcss.gov.on.ca/en/dshistory) and photos of Huronia.
We are sorry
On December 9, 2013, Ontario Premier Kathleen Wynne issued this apology (mcss.gov.on.ca) to former residents of Huronia and two other Ontario institutions, as well as their families:
“I offer an apology to the men, women and children of Ontario who were failed by a model of institutional care for people with developmental disabilities. We must look in the eyes of those who have been affected, and those they leave behind, and say: 'We are sorry.'”
Radio with a bow-tie
Listen to two CBC radio documentaries on Huronia that aired on December 4, 2011 on The Sunday Edition in 2011, here (Hour Three) (www.cbc.ca/thesundayedition) and on the same site for November 27, 2011 (Hour One).
MDC up close
In a 2010 article for THIS magazine (this.org) entitled “A Room of One's Own,” I wrote about the Manitoba Developmental Centre. The piece draws on my interview with Ian Brown, a rare two-hour media tour of MDC with CEO Cynthia Winram, and my interview with former MDC resident David Weremy.
Hugo and Nick
“Centre of attention” (winnipegfreepress.com/opinion) was my 2011 attempt at a nuanced look at MDC in the Winnipeg Free Press. It tells more of Hugo and Nick Unruh's story.
MDC should close
Last year I wrote a more direct piece about MDC, making that case that it should be thoughtfully closed. See “Development centre's time is past” (winnipegfreepress.com/opinion):
“MDC provides some innovative programming and employs many caring staff. Still, it is literally and figuratively an aging left-over of an era that should make us shudder. I would definitely not want to live there, so why should 220 people be forced to?”