Hot! Grassroots group takes back patients’ stories

TheStar.com – living/disabilities
Published On Sat Jun 25 2011.   By Helen Henderson, Disabilities Reporter

Some call it “patient porn,” which is not exactly the same as “disability tourism,” but not totally different either.

Both are ways in which the world in general does the quickie exploration tour of the world of disability. We might as easily talk about gender tourism or racial tourism or any expedition into otherness, any trip into what travellers consider uncharted territory.

They peak, peep, peer, probe, poke their noses in and come away thinking they have gained perspective. This may or may not be true, but either way the risks are huge for those who find themselves the object of such study, no matter how well-intentioned or how scholarly.

Allowing ourselves to be put under the microscope may be a necessary evil as a marginalized group trying to combat stereotypes and get disability issues into the mainstream, where they belong.

In an effort to get social policy-makers to focus on us, we need to catch their attention. So we swallow our pride, grit our teeth and allow our most private and personal stories to become public.

It’s one of the most effective, compelling ways of getting the word out, but the risks are huge, as I’ve been learning in a course on narratives at Ryerson University. Too often our words are twisted, subverted by the very institutions and purveyors of stereotypes we are trying to bring into the light.

As a wise friend is fond of saying: “Your words are not your own when they leave your mouth.”

Now a group calling itself “a grassroots collection of individuals” is saying “Hands off our stories.” They are trying to reclaim the narrative process, reshaping it into something that is more equitable. And they’ll be presenting their ideas at an event in Toronto on June 28.

“Our stories have the potential to change the world,” the group notes on their website, recoveringourstories.ca. However, they add, sometimes these stories are “stolen, appropriated or taken out of context by organizations and institutions acting in their own self-interest.”

When this happens, instead of translating into meaningful change, the narrative is turned into one more misconstrued depiction of tragic heroism, the kind of thing that has strangers portraying those of us with disabilities as heroes just for getting out of bed every morning. They marvel loudly and patronizingly at our “pluckiness” while knowingly nudging each other about what they are convinced are overwhelmingly dismal existences marked by misfortune.

Trust me, the misfortune lies with a world that fails to recognize the richness in our lives.

“Sharing personal stories has always been central and important in the history of organizing for change,” says the Recovering Our Stories group. “Psychiatric survivors/consumers/service users get asked to share their story a lot.”

The increasing appropriation of these stories turns them into “a type of ‘patient porn,’ where audiences endlessly stare, observe and consume personal and often vulnerable accounts.”

The group aims “to create spaces where we can resist, reinvent and reclaim our stories.”

“In Whose Interest? How psychiatric survivors can use our stories to change the world” will take place from 2 to 4 p.m. on June 28 in POD 250 at Ryerson University, 350 Victoria St. Speakers include storyteller, poet and advocate Eli Clare.

Speaking of new ways of telling stories , Ontario Lieutenant Governor David Onley will be hanging art work by members of this province’s L’Arche community in his offices for the next six months.

That means visiting dignitaries will get a glimpse of how people with intellectual disabilities see the world.

Perspective is everything.

Helen Henderson is a freelance writer and disability-studies student at Ryerson University. Her column appears Saturdays. helenhenderson@sympatico.ca

< http://www.thestar.com/living/disabilities/article/1013300–henderson-grassroots-group-takes-back-patients-stories >

1 Comment

  1. Karen McCauley

    I applaud the attention being given to how we appropriate other people’s life narratives, and to what purpose. Unfortunately, research undertaken to represent the life experiences of people with disabilities (as well as other marginalized groups) too often ends up doing more to advance the professional interests of the investigators than the status of those most directly affected by cultural assumptions and social policy that perpetuates inequality.

    However, as grass roots groups work to “reclaim” their stories, we must not lose sight of the significant number of people who have cognitive impairments that limit or preclude the ability to speak for themselves. By failing to acknowledge that not everyone is able to communicate a coherent self-narrative we actually contribute to their social and political invisibility.

    If we believe that there is something to learn from every life story then researchers and policy makers need to continue to work to find creative, ethical ways to represent the full spectrum of human diversity, and all the ways that we express a relationship with the world.

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