Philip Moscovitch writes frequently on mental health and mental illness. He is working on a book about life with psychosis – for those experiencing it and those around them.
It’s nearly Bell Let’s Talk Day. You know, the one day of the year when social media is flooded with messages urging us to talk about mental health and to feel good about doing it.
But as the father of a young adult who has experienced mental illness, campaigns like this make me want to scream.
On its Let’s Talk website, Bell boasts about donating money to “mental health” – the words “mental illness” rarely appear – and uses inane slogans such as “Mental health affects us all.” Money from the campaign goes to causes including “fighting the stigma”, a vague-sounding goal that puts the onus on people facing prejudice to end the discrimination against them.
Canada has no shortage of mental-health advocacy and awareness groups. In my province, the Mental Health Foundation of Nova Scotia holds an annual gala fundraiser, complete with local celebrities and politicians. The organization’s key platitude: “#changingthewaypeoplethink.”
And in late November, the Canadian Mental Health Association published a blog post encouraging readers to “keep your mental health top of mind” by putting together a “workplace wellness box including things that help reduce stress and put an accent on feeling well.” What kinds of things? Oh, you know: colouring books, essential oils, fidget spinners, tea. Leading mental-health expert Stan Kutcher, who has since been appointed to the Senate, tweeted in response: "You got to be kidding. Right?... Please tell us that this is not what our mental-health advocacy has become.”
It’s hard to argue with raising awareness and fighting stigma. But those things don’t do much to help people who are living in precarious housing or trying to find a way to pay for anti-psychotic medication, which can cost thousands a year.
There is little evidence that these kinds of campaigns have any significant effect on changing people’s beliefs or behaviour. A study published in the medical journal The Lancet in 2015 said that when it comes to medium- and- long-term effectiveness of anti-stigma campaigns, there is “some evidence of effectiveness in improving knowledge and attitudes, but not for behavioural outcomes.” In other words, people might change the way they think – but not how they behave.
Even worse, the campaigns could be counter-productive. “The more we emphasize how widespread the stigma of mental illness is," said psychiatrist Ross Norman at a 2013 conference in Montreal on early psychosis treatment, “the more we may be reinforcing people’s stigmatizing responses.”
My son, who has been open about his recovery from psychosis, knows this flipside of fighting stigma and how appearances are inherently built into how people respond to someone else’s mental illness. “Even as a privileged person, you are marginalized when you have a mental illness," he said at a 2017 talk at a coffee house in Nova Scotia organized by a group advocating for better funding, community support and more creative solutions in mental-health care. "There were nights when people I thought were my friends wouldn’t let me sleep at their place, I thought I was alienated from my family, it was minus-15, and I was just walking down the streets of Halifax with jeans that were frozen to the bone, unable to go anywhere and sleeping in underground parking lots.”
One mental-health professional – who has a diagnosed mental illness and asked to remain anonymous because of potential career repercussions – told me she used to appear at awareness fundraising galas but doesn’t anymore. “You become kind of a dancing monkey." she said. “I’m there representing people with mental illness because I can put on a dress, look like a middle-class person, speak at a fancy event and not make people uncomfortable ... Meanwhile, people who are not being served well by the system would not even be allowed into the room.”
Indeed, despite years of anti-stigma campaigns, most of the people I have interviewed about psychosis don’t want to use their real names, for fear of the personal and professional consequences. Asking people with mental illness to reduce stigma by telling their stories potentially exposes them to more discrimination.
I’m not suggesting groups devoted to raising awareness don’t also fund worthwhile programs and services. They do. But they don’t emphasize the kinds of fundamental change we need.
It does no good to raise awareness if you have an underfunded mobile crisis team that only has the capacity to go out on calls for 12 hours a day, or if patients wait months for assessment, or if you can’t provide stable, supportive housing for those who need it so they can recover and carry on with happy and productive lives.
Let’s talk about that.