They’ve never had their voices heard: that’s the one thing that the people who have been through Nova Scotia’s mental-health-care system over the past 50 years have in common. A Halifax project, purportedly the first of its kind in Canada, is breaking that silence.
Our Voices Matter is recording the stories of Nova Scotians aged 50 and up who have lived through the turmoil and upheaval of a mental-health crisis. Susan Kilbride Roper heads the project. Like many of those involved, she has firsthand experience; she’s struggled with bipolar disorder for much of her life.
“People need to record their memories, because as we get older, there are fewer and fewer remaining,” she says. Workers have spoken with about 30 people so far. They’ve extended the period for new interviews as positive word-of-mouth spreads.
Many people report being abandoned by uncomprehending friends and family as their conditions took hold, winding up in institutional care. In places like the Nova Scotia Hospital, they suffered further indignities from primitive electro-shock therapy, ill-trained staff and prolonged periods of isolation. A team of interviewers, including award-winning writer Anna Quon, have blazed the way. The interviews are recorded on video, audio or as written scripts to be shared with other mental-health-care consumers, health professionals and researchers. The Canadian Mental Health Association, Dalhousie University and Saint Mary’s University will hold the archive. Roper hopes it eventually goes online so everyone can access it.
“In some of the interviews, people have never been asked their opinion of things,” she says. “To be respected and honoured by the process has been amazing for people.” From an academic perspective, it’s also important to get an insider’s take on the permanent record so that future generations won’t rely solely on professional accounts, she adds.
“It’s going to be a unique project in Canada. We’re making the rules—we’re going to have a rule book by the time we’re finished,” Roper laughs. “We have the good old pioneer spirit.”
Roy Muise shared his story after years of silence compounded his severe depression. He was first hospitalized after a breakdown in 1977. “It was not a good experience, which is putting it mildly,” the 58-year-old says today. Life in the NS (as the Nova Scotia Hospital is colloquially known) didn’t help. “You were lined up to take your medication, meals were served on the ward,” he recalls. “There were no activities during the day. You were basically just sitting around.”
Every mental illness in the province was represented on his mixed ward, meaning communication between patients was limited. The dull routine was punctuated by fear when a patient was taken for convulsive therapy shock treatments.
“You’d see people go down for their shock treatment and they’d come back and be in bed for three days,” Muise says. “You were always afraid: what if that happens to me? You were never asked anything… It’s funny. Six months ago, I finally got to see One Flew Over the Cuckoo’s Nest, and I thought: ‘Oh my God, that’s what the hospital was like, except we didn’t have the group therapy.’ It was a scary time for a lot of people.”
He eventually got out and survived the 1980s in a state of denial, before attempting suicide in 1991. He wound up at the Abbey Lane hospital and stayed there on and off until 1997.
Life at Abbey Lane was better than the NS of the 1970s, with a few activities, books and a TV to pass the time. He even got the occasional day pass to leave the facility. People with severe mental illnesses were on different units, so he had more in common with people on his ward. “You were treated more like a person,” he says. He still wasn’t consulted about his treatment and people still lived in fear of the “QT.” He isn’t sure what the QT stands for, but he describes it as a padded room without the pads, where patients would be stripped of clothing and left in isolation for 12 to 24 hours. Muise says he often saw staff provoke patients into a reaction that would land them in the QT. “For some people, it was a real power trip to work on a mental-health ward,” he says. “You had so much control over everybody.”
Muise shared his story with Our Voices Matter in the hopes that others like him will know there is a way out and so that people don’t forget the past. “I’ve had people get up at the end of a presentation and say, ‘If you fellows would get off your butts and get to work, they’d be no problem,’” he says. “I know there are a lot of people out there who would like things to go back to the way they used to be. We have to be so mindful that doesn’t happen.”Judith Fingard, a retired Dalhousie University professor and consultant on the Our Voices Matter project, says the archive will be a great resource. Fingard, who co-authored Protect, Befriend, Respect: Nova Scotia’s Mental Health Movement, explains that while there is no shortage of professional accounts of mental-health care, including her own book, first-hand accounts are harder to come by.
“From a scholarly perspective, how are you going to approach people like that?” she asks. “How are you going to find them? Are they going to be suspicious of you? This is their project and they have ownership of it and that makes people who are suffering from mental illnesses much more comfortable with talking to interviewers. I think it will be valuable locally, valuable nationwide and maybe even internationally. We haven’t seen anything very much like this.”
For Muise, that’s a start. “It gives a reason for what we’ve gone through,” he says.
For more information about the project, call 455-5445.
Click here to view the photo gallery from Lisa Enman’s photo shoot to accompany this article.