Betty Anne Gagnon

This week on the CBC radio show The Current, they aired a documentary called "What Happened to Betty Anne Gagnon?".  It tells the horrific story of a woman with an intellectual disability who was brutally abused, neglected, and eventually died at the hands of her own family.  The story is disturbing.  But it is also true. I wrote the following note to The Current in response to the story:

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I listened with anguish, but not disbelief, to your documentary about the tragic life and death of Betty Ann Gagnon.  As well as being the parent of two boys with intellectual disabilities, I am also a long term member of L’Arche, an international federation of communities, founded by Canadian Jean Vanier, creating home and work with people who have intellectual disabilities.  After more than 20 years of involvement in the disability field, I am more convinced than ever that people with intellectual disabilities are the most devalued and voiceless in our society.  Often unable to articulate themselves using traditional means, they rely on others to speak for them, and as such have little or no power over their own message. 

In L’Arche, as in People First and CACL, we are deeply committed to advocating for the rights of people with intellectual disabilities.  Our advocacy is rooted in the passionate conviction that these individuals, often marginalized, overlooked and abused, are not a burden on the social safety net.  Rather, they are full citizens with something to say and something to offer.  And we ignore their contributions at our peril.  If we desire a more welcoming, compassionate, and creative Canadian society – and I think we do – these men and women can be our teachers and our leaders.  But as long as our systems continue to push them to sidelines their voices will remain unheard and their lessons unlearned.   And they, like Betty Ann Gagnon, will be the victims of our collective neglect.

The Still, Small Voice

An investigative team from the school of journalism at the University of Kings College released an in-depth article yesterday on the crisis in housing for people with intellectual disabilities in Nova Scotia.  The piece, which you can find here, is thorough, well-researched, wide in scope, and heartbreaking.  It seems that the primary struggles of the individuals profiled in the piece are not their disabilities per se, nor the way those disabilities might affect their mobility, learning skills, or emotional health.  Instead, the suffering they endure arises from the way the provincial "support" system treats them as a result of their disabilities.  They are reduced to their diagnoses, their difficult behaviours, their classification level.  They languish on endless waiting lists with no idea of the future, then are hurried into last-minute crisis placements at warehousing facilities.  They are forced to fit into an existing (outdated) system; the system is not expected to change to fit the needs of individuals.

This is not news to any of us who have friends or family members with intellectual disabilities, or who have been involved in this field for any length of time.  Our people are overlooked, patronized, ignored, devalued, and abused.  Their voices are not heard.  But boy, do they have something to say.

Lindsay and Tanya, both of whom graduated from high school and hold down full time jobs, would say that they deserve the right to stay home alone and watch TV or read a book or relax on the couch for a couple of hours every now and then.  But because they live in a provincially funded group home, they are denied this dignity of risk and are forced to join whenever their housemates leave the house.

Mary would say that she wants to live in her own apartment, eat what she wants when she wants, choose her own movies, stay in her PJs all weekend when she feels like it.  But the provincial system only allows a few agencies to provide independent living support, and since Mary does not live near any of these supporting agencies, she isn't eligible for that kind of help.

Carroll would say that he wants to stay in his own home, where he has been living for 23 years, even though he is getting older and his needs are changing.  But since that home is a provincially funded group home, Caroll has to leave and move to a nursing home facility an hour away to live out his last days in isolation, surrounded by strangers.

There are hundreds of stories like these across our province and across our country, hundreds of people whose voices are not being heard.  I applaud the families and individuals who are standing up and speaking louder in response.  I pledge to do the same.