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Mad about ‘mad’ rights

Lucy Costa wants to change perceptions of mental illness.
|Written By Vawn Himmelsbach
Mad about ‘mad’ rights
Photo: Sandra Strangemore

Madness isn’t just a label or a category. And Lucy Costa wants to change our perception of what “mad” actually is — as a scholar, researcher, and activist.

“Mad” is an emerging discipline that examines the lived experiences of those with psychiatric disorders and challenges the way we look at mental illness. Costa has spent close to a decade working for the Empowerment Council, which is part of the Centre for Addiction and Mental Health. It advocates for those with psychiatric disorders and is fighting for equality, human rights, and social justice. This is a group of people, after all, that is often overlooked or misunderstood.

And last year, Costa — who is considered both a leader and a role model in the psychiatric community — was recognized for her work with an Access Award for Disability Issues from the City of Toronto. “I used psychiatric services myself,” says Costa. “From that standpoint I was able to have a better sense of view of what accessing services means, and it was something more than just the journey through diagnostic categories and labels.”

Despite full-time employment and her work with several other organizations, Costa has also found time to pursue her LLM at Osgoode Hall Law School. Part of the reason behind her decision to attend Osgoode was an interest in bridging the discipline of law and the emerging discipline of mad studies. Universities are starting to offer courses in mad studies, including Ryerson and York, and Costa recently wrote a chapter in a book called Mad Matters, published by the Canadian Scholars’ Press. “It’s an extension of the work that I do but in a more scholarly effort,” Costa says of her studies.

One of the areas she’d like to explore more in her thesis is the disconnect between discourses on patient-centred care and legal jurisprudence. “The whole world is going bananas with patient-centred care,” but a lot of it is rhetoric, says Costa. “How can you do that in a climate of austerity? Patients should have a lot of choice and options.” That’s not happening in the real world where hospitals face budget constraints and fewer options are available in the community for people with psychiatric disorders.

Costa is a board member with ARCH Disability Law Centre, a Toronto-based community legal clinic that provides legal support to people with disabilities. She has used that connection to help form a partnership with Osgoode that allows students to do placements with ARCH, as well as with CAMH. “I’m there as a student and to work with Osgoode students to do front-line work with an advocacy [organization],” says Costa.

It’s a great way to give students practical experience that moves away from legal theory, she says, pointing to the work one Osgoode student did on the Ashley Smith inquest. Smith, an imprisoned 19-year-old, died six years ago after guards hesitated to intervene while she was strangling herself in her cell. In December, a coroner’s inquest jury ruled her death a homicide. The inquest provided 104 recommendations, including one that seriously mentally ill female offenders not be held in prisons. But, “how are some of these [recommendations] going to be implemented when there’s no money?”

Costa says inquests can become a legal performance (the recommendations aren’t binding). But they can also have a symbolic meaning: Smith’s inquest declared her death to be a homicide, not a suicide, and that could lead to changes down the road. The case made headlines because of its sensationalist details, but it also highlighted very real problems within the mental-health system. One is the need to defend the rights of those with psychiatric disorders — but also to help patients become more aware of what those rights are.

Part of Costa’s work involves making the language of rights and advocacy more accessible. But there’s also a component of her work that is very much adversarial, which involves raising issues about policy or law that conflict with the Charter of Rights. “Knowing what your rights are is pretty important when you have your freedom taken away,” says Costa. Every person who comes into a hospital is supposed to get a bill of rights, but previously it wasn’t written in a language a layperson could understand.

Part of her goal is to educate not only service users, but also service providers about what those rights are, as well as making the language around those rights accessible to everyone. As such, she’s helped to create a bill of client rights for CAMH, and has also developed a 10-week educational primer on mental health and the law entitled “Mad about Rights.”

Society has come a long way, but there’s still work to be done around rights consciousness. “There are phone numbers [patients] can call — prior to the ’80s nobody had that,” says Costa. But “doctor power still trumps everything.”

Over the years, Costa has also collaborated on several advocacy and research projects. In 2011, for example, she co-initiated the Recovering our Stories Collective. Patients are often asked to tell their story as a way to educate the public, such as Margaret Trudeau’s “narrative” around bipolar disorder. But there’s an overuse of patient narratives in the mental-health sector, and “at times it’s unethical and actually supports a particular kind of hegemonic understanding of mental health,” notes Costa. “It really is one message: My name is Joe, I have x disorder, I took meds, and I got better. You never hear any alteration in that story.”

Recovering our Stories Collective is one way of expanding those narratives. “Many people become empowered knowing there’s different ways of narrating their stories,” she says.

Tied into this work are her efforts with the Psychiatric Disabilities Anti-Violence Coalition, which aims to raise awareness of violence experienced by people with psycho-social disabilities. “I think that in an austerity climate people experience a lot of violence,” says Costa, noting it could be institutionalized violence from police or within communities. In many cases, that violence is invisible within a legal framework; it’s not often that a person will take forward a hate crime related to mental health. Indeed, those with mental-health issues do not constitute a group that is included in hate-crime legislation. “How do we get there . . . without falling into the usual tropes about how we talk about violence?”

The narrative around violence and mental health tends to be one of two extremes: “crazy” people who commit acts of violence, or those who experience violence because of a mental-health issue. There is also “micro” stuff — everyday violence — that doesn’t make headlines, she says. The mad community is concerned about everything from issues of employment and housing, to discrimination, human rights violations, and institutionalization.

Costa has inspired many others in the mad community to fight alongside her to raise consciousness of mental-health narratives, make rights accessible to people in a way they can understand, and promote equity for those with psychiatric disorders.

That’s why real-life experience is so important in a school setting. “You have to understand the legislation, but you also need to know what it’s like [within the system],” she says. “Kudos to Osgoode because they have an interdisciplinary approach.”

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