Friday, September 20, 2013

"People believe us now."

On Tuesday, the Ontario government settled a class-action lawsuit with former residents of Huronia Regional Centre, a massive institution for men and women with intellectual disabilities that was operated by the Province of Ontario for 133 years, and that finally closed in 2009.  The thousands of men and women who were incarcerated there, for the crime of being born with a disability, suffered tremendous physical, emotional, and sexual abuse.  They were sterilized, forced into hard labour for no pay, denied the basic freedoms we take for granted, and made to believe they were sub-human.  To hear from some Huronia survivors, you can listen to David Gutnick's excellent radio documentary The Gristle in the Stew, from the CBC's Sunday Edition.  There are numerous articles about the details of the recent court settlement, a couple of which you can find here and here.

When L'Arche was founded 50 years ago, the dream of liberating people from institutional care was at the heart of our story.  So many of our people came from the "land of the long corridor", as David Hingsburger so eloquently describes it.  They came from padded rooms and too much medication, dormitory bedrooms and bathrooms without doors, nursing stations and blaring televisions, dining halls and never going outside.  They came from suffering and neglect and powerlessness and violence. 

And yet they survived.  And not just to exist, grateful to be free from that life and content with whatever they were offered in their new lives at L'Arche.  They survived to live - to celebrate and love and argue and grieve and demand what they wanted.  They survived to embrace the whole of life, the abundance that is sometimes wonderful and often excruciating.  They survived, and keep surviving, and that is amazing.

My boys, both of whom have intellectual disabilities, will never live the horror of institutional life.  They are included in their school, welcomed in our neighbourhood, loved fiercely and unconditionally by everyone in our family.  But the story of Huronia and so many other awful places that have existed and continue to exist is their story, too.  The men and women who endured institutionalization, and who fought to end it, are their ancestors, their predecessors in the struggle for disability rights.  My boys need to know that story - we need to teach them that story - so they can be proud of what their people have accomplished, so that they will not be afraid to demand what they deserve: a society that respects, listens, honours, and welcomes them.

Thursday, August 1, 2013

Chromosomal Controversy

Today's edition of The Current contained an excellent piece about Down Syndrome, particularly regarding potential implications of recent research on the 21st chromosome.  You can listen to the piece here.  Following is a letter I sent to The Current in response.

I want to congratulate you for your piece this morning covering the recent research on the 21st chromosome, and its potential implications on the life and the existence of people with Down Syndrome.  As the parent of two kids with Down Syndrome, and a long time member of L’Arche, my life is full of interactions, relationships, humour, and struggle centred around that extra piece of genetic material.

To hear both the scientific perspective, and the opinions of two articulate and passionate parents, was a refreshing shift from the typical media coverage of disability, which inevitably assumes that disability is bad, and thus eliminating the disability must be good.

Most importantly, your decision to talk with an individual with Down Syndrome was what made your coverage exemplary.  Too often, debate and decisions about people with intellectual disabilities happen without their participation or consent. 

In 2011, researchers at Boston’s Children’s Hospital published three studies about individuals with Down Syndrome and their families.  Among other results, their studies reported that nearly 99% of people with Down Syndrome indicated that they were happy with their lives, 97% liked who they are, and 96% liked how they look.  Before we push ahead in our efforts to eliminate Down Syndrome, perhaps we ought to spend a little more time and effort hearing from people who are proud of who they are, regardless of their genetic differences.

Thursday, June 20, 2013

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:

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.

Wednesday, June 12, 2013

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.

Thursday, May 23, 2013

The Right House

Last weekend, the CBC Radio program Maritime Magazine aired this 30 minute documentary about the plight of Nova Scotians with intellectual disabilities fighting for for appropriate living situations.  I sent them this letter in response.

Dear Ms. Brunelle,

I wanted to thank you for shining a light on the injustice faced by so many people with intellectual disabilities in Nova Scotia.

Many of your listeners may not be aware that Canada has ratified the United Nations Convention on the Rights of Persons with Disabilities.  This Convention states, among other things, that "persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement."

The Convention guarantees that people with disabilities are entitled to receive "the assistance necessary to support living and inclusion in the community".

Your story clearly illustrates that this is not happening for many people with disabilities in this province.

After 20 years supporting people with disabilities in L'Arche, it is my sense that the solutions to these issues are not as elusive or complex as our governments would have us believe.  There are many individuals with disabilities, families, and supporting agencies who are eager to design and deliver the type of support that is needed, often with much less money that the government currently spends on outdated, custodial care. Unfortunately, it is often the systems that are meant to support our people, and the bureaucrats who administer these systems, that get in the way of the innovation and creativity of the people "in the field".

A key concern for me is whether those in positions of power see people with intellectual disabilities as a problem to be solved, or if they actually value the contributions that these individuals can bring to our society if given the opportunity to do so.  It is my hope that the remarkable people I have met through my involvement with L'Arche and other like-minded organizations will continue to announce their value and refuse to be defeated by a system that has lost touch with the needs of the most vulnerable people in our society.

Jenn Power
L'Arche Atlantic

Wednesday, May 15, 2013

Pilgrim's Progress

Recently, I was with a diverse, committed, and long-suffering group of disability activists.  We had the ear of a couple of government employees who were seeking input on, among other things, how best to support people with disabilities in our province.

There was no shortage of ideas.  (No shortage of frustration, either, in having to repeat AGAIN the feedback that's been offered to a seemingly endless stream of bureaucrats over the years.)  One issue centred around the requirement of folks with disabilities to "progress".  They are subject to a constant stream of (well-meaning) growth plans, goals, behaviour strategies, incentives, and on and on.  The consensus around the table was that people with disabilities should be allowed to be lazy, too!

Dennis fights for this right with a passion that is anything but lazy.  Having lived in a group home for many years, Dennis announced in words and with actions that he did not want to live with a crowd anymore, that he wanted - needed! - his own space.  So with some creative planning and negotiation, we were able to build a bachelor apartment for Dennis where he can have mornings and evenings on his own, but still be with friends for the times he enjoys - mealtimes, outings, etc.  In his apartment he can sleep in, have executive decision making power on what movies get watched, leave dishes in the sink, take a sick day from work, stay all day in pyjamas.

The program that we squeezed Dennis into in order to access funding for him values accomplishments, progress, and improvement.  Over his first few years in the apartment, Dennis pushed against the expectations of his caseworker and support team, choosing not to do things like learn to manage his own medication, take cooking lessons, or join service clubs or interest groups in the wider communtiy.  This worked well for Dennis, but it did not sit well with the decision-makers who signed the cheques for his (meagre) funding.

After a few years of ongoing back-and-forth discussions about this so-called problem, Dennis was summoned to a meeting to consider the future of his independent living arrangement.  I accompanied him to this meeting, held half an hour's drive away in a building he had never seen before.  There were six (six!) bureaucrats/social workers/residential support workers waiting for Dennis, all of whom had clearly already decided that Dennis was not a good fit with this apartment program.  They suggested as such to Dennis, in a manner that felt more than a little like a firing squad.  But Dennis would not budge.  He firmly responded to every question that what he wanted was to stay in his apartment, with the support he already had, and without having to take on any more self-improvment projects.  But, the deciders insisted, you aren't making any progress.  And if you aren't making progress then you can't stay in this program.  And if you aren't in this program then there is no money for your apartment.  So no progress, no apartment.

Wait a minute, Dennis insisted.  I do so make progress.  You know I had a fridge that used to ice up all the time, and leak all over my apartment floor.  Me and my mom defrosted it, and Roddie fixed it, and now it doesn't ice up anymore.  That's progress.

Dennis still enjoys his apartment living.

Tuesday, April 23, 2013

She's A Fighter

Sandra is in the hospital. And not just for observation, or to get some treatment for ulcers, or to get IV antibiotics for pneumonia. Sandra is in the ICU after having had cancer, then major surgery, a stroke, internal bleeding, a second surgery, and now forced sedation to prevent swelling in her brain. The woman who almost never stops talking is now forced into silence by a neurological "incident" and a breathing tube down her throat. The woman who lives to model new outfits is now dressed by strangers in a never ending parade of plain blue johnny shirts that are anything but stylish. The woman who makes her way to work every day, despite illness that would drive others to their beds, now just agitatedly mutters "Monday, Monday, Monday" in her brief periods of wakefulness, worried, no doubt, about losing her job because of her extended absence.

There are so many reasons to be sad about Sandra. And we are. Last night at prayer I could see the exhaustion, confusion, and latent tears in so many eyes. I could hear in people's prayers ("I pray for what's best for Sandra...") their uncertainty about where this is all headed and what we should be hoping for. Sitting with Sandra and talking with her family I heard so much anger and frustration - Sandra's life started when she came to L'Arche, they said. An explosion of joy, pride, opportunity, could it all be at risk after just a year and a half? And in my own heart I feel all these emotions, too. Anger, fear, sadness, grief. Sleeping with the phone under my pillow in case there's a call. Searching the faces of the people who are managing Sandra's care for for some hint of what is in store for her. And for us.

Then yesterday I sat with Jamie, a newcomer to Sandra's house and one of her most fervent admirers. We talked about how sad it is that Sandra is sick again, and I described how serious the situation is. It was quiet for a minute, then Jamie said, "But she's a fighter, you know. She'll fight hard, Jenn."

Yes, she will.

Sandra has been a fighter all her life. Born with an intellectual disability in the 1950s, yet never doubting her own value. Losing her dad, her brother, and her mom in the span of just a few years yet still seeing the beauty of life. Having to leave her home with just a few days notice to move to the country with a bunch of people she'd never met and whose customs were, in Sandra's own words "pretty strange". And yet embracing our community, and all of us in it, with gusto and generosity and love. Sandra fights because she believes in life, in life lived with abundance (but not vegetables). Sandra fights because she knows she has something to offer to this world, something like humour and music and hard work. Sandra fights because if she doesn't, who will fight for her?

Well, Sandra, we'll fight for you. In a very short time you have talked and sang and cried and demanded and charmed your way into our hearts. And now that you're in there, we won't let you out. We will fight with prayer and laughter and patience and hope. We will fight by shopping and singing and eating apple pie.

And we will be there for you when you need us.  However you need us.