Stories Told

Two stories appeared this week, in papers across Canada, about the mistreatment of people with disabilities in group homes here in Ontario. One story begins with an interview with David White the other, quite different story leads with an interview with Lisette Lanthier, both of whom are self advocates with disabilities. While I am not going to, in this post, discuss the content of the articles by Michael Tutton, as I believe they speak for themselves and are compelling reading enough without my having to comment on them. I will say here, what I told Mr. Tutton personally, stories like these, written by a watchful and questioning media are part of the solution. The media needs to take interest in what happens behind the closed doors of service systems, the media needs to take the responsibility of watchdog seriously. There are many things that we can do as parents and service providers to prevent abuse, but a watchful media has an important role in ensuring that what we say we do, we do. But what I really want to talk about is the amazing inclusion of the voices of people with disabilities in a story about the lives and experiences of people with disabilities.

Stories like these tend, or have tended, to focus on the voice of experts, all without disabilities, in the field of disabilities. It's like there has always been a subtle agreement that people who have the lived experience of having disabilities are so busy being disabled that they haven't had the time or, if they did, the capacity for understanding their own lives. As you will see from one of the stories, I am interviewed, so I knew that the stories were being written, moreover, I knew that Mr. Tutton was planning on interviewing people with disabilities for the piece. I was beyond pleased when he told me that he was planning on moving past the experts to speak to the experts.

I happen to know both David White and Lisette Lanthier and I was absolutely pleased and thrilled that these two remarkable people were going to have the opportunity to find an audience for their views. I do not call either of them remarkable for any reason pertaining to their disability. I find that kind of 'pumping up' objectionable. I say 'remarkable' because of their ability, each of them, to speak their minds clearly and express themselves thoughtfully. If you watch interviews of people in the street or politicians, being able to speak plainly and cogently is indeed remarkable. Anyways, each piece leads with their interview. In doing so Mr. Tutton gives a sense of the gravity of the mistreatment of which he writes. This is something that happens to the Davids and the Lisettes all around the world, people who are people who live within care systems.

It wasn't long ago when people with intellectual disabilities weren't allowed to have names, or to have identities, let alone being given space to have voices. I imagine still there are places where people with disabilities would not be allowed to comment on stories like the ones just written. Lisette and David are at the leading edge of people with disabilities who are willing and able to speak about their lived experiences as people with disabilities. Up until now people with intellectual disabilities have been allowed opportunity only to tell one kind of story - the kind that inspires others, about achievement or about dreams fulfilled. Those stories are important, they too are part of the experience of disability. But so too are stories about abuse and mistreatment and bullying. So too are commentaries on the service system and how it needs to change. So too is the need for justice and the right to respectful treatment in the community.

Lisette and David appear, pictures and all, proudly public and confidently outspoken about their views. Behind these two people are families and service agencies who have worked to ensure that 'voice' and 'choice' are part of the real lived experience of those with disabilities. The decision to speak or not to speak rested with each of them. They are there because, ultimately, they decided to be there. Others moved out of their way and handed the microphone over, at last, to those whose lives had been lived in shadows and their voices hushed away into silence.

No more.

Thank God.

No more.