Differently gifted: caring for our most vulnerable

By Will Braun

“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.

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.

HOME SETTING — Residents with their caregiver at a group home get together for a photo. Advocates for closing large facilities point out that thousands of people in Canada have been successfully transitioned from large institutions to group homes or individualized settings, writes Will Braun. (Photo by Terry Saretsky)

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 exist 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 per cent 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 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.

This article is based on interviews and research done between 2010 and the present, parts of which have been published elsewhere. Braun is a senior writer for Canadian Mennonite magazine (www.canadianmennonite.org).

 
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