Out from the shadows

Dr. Susan Bryson is a leading researcher in autism spectrum disorders at the IWK Children’s Hospital, but she understands community needs outside a lab. Bryson delivered the keynote address Thursday at the Tools for Life Conference in Greenwich. “Welcoming communities for everyone” was the title of her talk and as Bryson spoke, the names of disabled people I have heard talk about their heartfelt dreams rippled through my mind. Those of us on the normal spectrum like to think our communities are open and welcoming, but the reality can be different for anyone with challenges.

Bryson reminded us there is a long and cruel history from the time children and adults with disabilities were institutionalized. She even had some of her own horror stories from the 1970s about people shaking when certain staff members were nearby.

The reality is we closed institutions with few supports put in place, Bryson stated. Today there is finally talk about positive community integration, but too many disabled people still don’t have a good quality of life or have trouble accessing services.

She stated there are also too many women who are housebound that never get respite while caring for a family member. She added there are Nova Scotia parents who can’t go out due to the behaviour of a family member.

The late U.S. vice president Hubert Humphrey wrote a kind of liberal mantra when he said that the moral test of government is how it treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; and those who are in the shadows of life, the sick, the needy and the handicapped.

As long as the disabled are invisible, we have a significant problem. There ought to be some choice in their lives. Sure, they are present in the school system, but then the walls come down. Bryson believes that if typical life opportunities, including cultural, recreational and spiritual, aren’t being met for the disabled then we have failed the moral test.

Jean Vanier believed that community could change the world. He proved it in 1964 when he found the L’Arche movement. L’Arche Homefires in Wolfville demonstrates the positive. Their celebrations are the only place I’ve watched the disabled dance.

Vanier warned that, “community begins in mystery and ends in administration. Leaders move away from people and into paper.” Thus it was that Bryson emphasized transparency, leadership and teamwork.

Unlike the health care model, she suggested agencies working with the disabled need to model a bottom-up approach. We need more lobbying when barriers are in the way of genuine inclusion.

The Tools for Life Conference attracted over 900 people this year. It is a fantastic means of breaking down those barriers. Someday Sharon MacInnis will find a job and Rubye Campbell will be able to enter any store she wants and we will truly have a welcoming community.