As the LGBT, queer and trans communities commence the annual Pride celebrations this week, another sort of pride is being ushered in to the province: Mad Pride.
Andrea White, an organizer with St. John’s first Mad Pride group, was inspired to start organizing following an incident in early 2016, shortly after she moved home from Toronto. At a panel organized to discuss mental health services in health care, White asked organizers whether there was any involvement of people with first-hand experience using those services.
“I just asked if there was any representation from service users, and they said no, and then they subsequently shut down the conversation and they didn’t want to engage around it,” she recalled. “So I said, okay, well maybe I’ll do my own thing based on my experience in Toronto, being involved in Mad Pride there.”
Toronto was one of the earliest centres of the Mad Pride movement, which has now spread throughout the world. The first official Mad Pride event in that city took place in 1993 and was originally called ‘Psychiatric Survivor Pride Day’, the term used as a visceral reflection of the often brutal treatment of psychiatric patients in the 20th century.
The original 1993 march concluded at the Queen Street Mental Health Centre in downtown Toronto (founded in 1850 as the Provincial Lunatic Asylum) where marchers laid flowers by the gate along with a list of those who had died in the asylum.
A quarter century later, Mad Pride events are held throughout the world. While groups like Toronto Mad Pride organize events throughout the year, July 14 has widely assumed the mantle of Mad Pride Day. It coincides with Bastille Day, the day that citizenship rights are celebrated in France, as well as a commemoration of the day the Bastille was stormed during the French Revolution and prisoners—including mental health patients—were liberated from the prison.
But what exactly is Mad Pride?
“That’s a good question,” White acknowledges. “I don’t think there’s a single answer. It tries to be pretty open and inclusive.”
The term ‘mad pride’ was inspired by Gay Pride and LBGTQ Pride, she said, explaining the purpose of using words like ‘mad’ and ‘crazy’ and ‘nuts’ is to reclaim language in the same way the gender equality movement has, and to “celebrate resilience and empowerment and move away from medical understandings [of madness] [without] necessarily rejecting them entirely.
“And looking at rights and history,” she continued, “because there’s been a long history of organizing by mental patients or whatever people call themselves—we don’t really use that term so much any more—going back to the late 19th century. And it’s definitely about alternatives [to traditional hospitalization], like peer-run spaces.”
Lucy Costa, a Toronto-based advocate who has also worked with Mad Pride Toronto, penned an explanation of the movement in a 2008 issue of the Bulletin for the Consumer/Survivor Information Resource Centre in Toronto, a centre which describes its work as supporting consumers and survivors of the mental health system.
“’Madness’ is an umbrella term for those of us that identify as ‘crazy, mentally ill, insane, psychiatric survivors, users, consumers or inmates,'” she wrote. “Madness used to be a word used as a way to belittle people who had psychiatric experiences but these days ‘madness’ is a word that has been reclaimed and re-possessed by the people it originally hurt.”
White emphasized the Mad Pride movement is “definitely more grassroots” and “definitely pro-survivor knowledge.
“My expertise is…my experience,” she said. “I don’t think it’s anti-medical model, but it’s certainly critical of the medical model and of the mental health system and the general lack of rights that people have in the mental health system, and lack of awareness of their rights, which I think is a huge thing here in terms of people not even knowing what their rights are.
“Those are things people who are doing Mad Pride are interested in: around rights, anti-discrimination, anti-oppression, and also celebrating creativity and difference. I don’t think it wants to romanticize madness, because I think that’s also dangerous; I don’t think madness is joyful for most people — it’s very complicated.”
Bringing Mad Pride to the Rock
White, who is originally from St. John’s, moved home six months ago after living in Toronto for eight years. Recognizing the need for a more grassroots, survivor and consumer-based movement around mental health, she organized a Mad Pride group in St. John’s that has regular meetings every couple of weeks and recently put out a call for submissions for a Mad Pride zine (the deadline closed on June 30) that will be published this month. In recognition of Mad Pride Day the group is also organizing a Mad Market on July 16 at The Lantern in St. John’s, which will provide an opportunity for people to sell art, craft items and other goods.
Roger Baggs, a St. John’s-based mental health advocate who also serves as the Chair of the National Council of Persons With Lived Experiences for the Canadian Mental Health Association, strongly supports White’s work and the opportunities Mad Pride presents.
“As a mental health advocate, I like it from several points of view,” said Baggs. “I like the ownership of the language — we’re taking back the language that has been used to oppress us. And it’s contentious, because people still say words like crazy, insane, those kinds of things. We feel that we have the right to use that language—but other people should really think twice about using that language. That’s a part of mad pride, to take ownership of that language, and to not necessarily be embarrassed or humiliated about mental illness either.
“Mental illness is a part of our lives, of our experience, [and] not all of it is bad,” he continued. “An individual who has obsessive compulsive disorder may have extreme gifts and talents they could offer the world. It’s just that at certain times in life the symptoms are out of control and they disable people. And people in our society don’t accommodate individuals who think differently, or present themselves differently. There’s still this expectation that we should all be cookie cutter people and dress a certain way and present ourselves a certain way and not be different. I think mad pride is about taking back what we’ve been through and turning it into something positive.”
I think mad pride is about taking back what we’ve been through and turning it into something positive. — Roger Baggs
Baggs pointed out that discrimination against those living with mental health conditions is supposed to be illegal, yet still happens all the time, from bullying on public transit to discrimination in employment. He says this acts in tandem with cultural attitudes which discourage people from talking openly about their experiences and conditions, and the result intensifies the disempowerment and marginalization of persons with mental health conditions. And the self-organizing of mental health service users has been key to challenging their disempowerment.
“People have no capacity to cope, people don’t learn about mental health, how to take care of themselves, people don’t learn how to relax, how to share feelings. We’re encouraged not to. In Newfoundland there’s this saying: ‘Oh, can’t complain!’ Perfect example,” he said, “I can’t complain because other people have it so much worse. But we did complain. We got together in self-help groups. We got together in different healing contexts — and we made safe places for ourselves.
“They might have been the only safe place they had in their lives, a place to go and be yourself,” Baggs continued. “That can do intense psychological damage to somebody, not being able to be yourself, or accept yourself, or keep thinking in the back of your mind that there’s something wrong with you. There’s nothing wrong with us. We may see the world differently, we may experience the world differently, some of us have delusions, some of us have obsessions, but so what?
“It’s sad, really. It’s just very sad. But we can take back the language. We can say yes, we are crazy. There are groups in Canada that are very uncomfortable with this but the thing is that mental illness awareness and mental health awareness is almost like an explosion that’s happening right now, and there’s so much that people are finally talking about, that we can’t stop or restrict these movements. There are multiple movements happening, and we can’t restrict them.”
White is pleased with the response she’s received, and touched by the support of the local community. An online GoFundMe campaign has raised a few hundred dollars in initial financing for the group, and they’ve been offered space for events and other resources.
White is full of ideas for expanding the group’s activities.
“Perhaps a social event at the Waterford accessible to in-patients, a tea party or something,” she mused, saying she’s also hopeful the group can raise funding to produce informational materials to educate patients about their rights, as well as training materials for medical providers.
Ultimately, she would like to see the establishment of a safe space in the city to provide housing to psychiatric patients and survivors, staffed by people with first-hand experiences as consumers and survivors of the psychiatric system. This reflects the emphasis the Mad Pride movement places on putting survivors and consumers of mental health services at the centre of decision-making.
White cites examples of alternative treatment centres in places like Ontario that are more social service-oriented, as opposed to medicalized or affiliated with the justice system. The problem, she notes, is that many services for those with mental health issues aren’t accessible until they start getting into trouble with the law.
“I think if there were home support services available for people when they were starting to get into trouble, like feeling unwell or not being able to go to work or do stuff, that would actually decrease [more serious problems] because lots of people are really isolated and then things just spiral out of control and they can’t really get any help until they’re at an acute point,” she explained, citing the Stella Burry Foundation as an example of an initiative that helps people living with mental illness and mental health conditions, “but it’s usually people who have been in conflict with the law.
“So they’re trying to keep people out of jail,” she continued. “You have to get to that point before you would be eligible for that kind of service. That’s where a lot of the money has gone. I mean, I’m not opposed to that but it’s unfortunate they can’t find a way to support people who are in a bad way but aren’t in conflict with the law.”
I think it’s unfortunate that we live in a world where you have to medicalize your distress in order for it to be recognized. You have to name it or you can’t get any support for it, and then it becomes formalized and becomes part of your identity. — Andrea White
Mad Pride, she noted, is about recognizing that madness and psychiatric disorders should not be solely defined by medical providers and justice officials.
“I think it’s unfortunate that we live in a world where you have to medicalize your distress in order for it to be recognized. You have to name it or you can’t get any support for it, and then it becomes formalized and becomes part of your identity.”
The problems of an underfunded system are exacerbated when funds are directed toward public awareness campaigns, she said, rather than into services to support those who need them.
“I think these anti-stigma campaigns have done the reverse of what they intended, because I think they’re seeking to make people different — like, to say you are neurologically different, that your brain is structurally different, which we don’t really know or understand in terms of science…[this] actually ‘others’ people even more. People tend to see people as not like them…so it’s okay to do things to them that we wouldn’t want done to us, like restrain people or seclude people.
“That’s the thing that upsets me — I don’t think people realize that that’s commonplace, still,” she continued. “They still seclude people here, they still restrict people, people get forcibly injected. They don’t try alternatives. The emphasis is so much on treatment, on accessing treatment, because there’s such a lack of services. And people don’t talk about it or realize it.
“You can’t take stigma to court. What we’re talking about is discrimination, it’s ableism. Stigma is a word that evades all the structural stuff that goes on.”
Addressing the structural barriers faced by mental health service users is important to Baggs as well. He points out that despite the awareness campaigns, people living with mental illness still face a range of stereotypes and myths. He says many people are frightened of those with mental illness, and that they are often associated with a stigma of violence.
“When really, most people with mental illness are more likely to be victims of violence. Like the individual on the street who’s roaming around homeless, the person who has a severe alcohol problem who is thrown out of their house, you know people with mental illnesses are much more likely to be victims of violence or exploitation than to hurt people. But this is something that a lot of people just don’t understand.
“Mad pride is about celebrating the history of the movement and taking back all the language that’s been used against us and being proud of ourselves. It’s taking back all of the things that have been used against us and owning them. We need to look at our gifts and talents and be accepted for positive things, not negative things.”