At first glance, About Canada: Disability Rights by Deborah Stienstra may be seen as a book targeted to an audience of people with disabilities, but her message is far more inclusive than the title suggests.
Stienstra states that her book is written for anyone with a heart. “In writing this, I wanted every person to understand how disability shapes each of our lives. For some of us, disability is obvious in the variations we illustrate; in others, it is in our community or friends and family.”
Stienstra saw her partner of 20 years live with multiple sclerosis until his death in 2004. “Our daily lives were involved in meeting barriers, advocating for rights, and working to keep a high quality of ordinary life for him and our family.
“As well, I have experienced changes in my own body that have meant I meet barriers,” she says.
Since 2000, Steinstra has worked in the area of disability studies, first as the Royal Bank Research Chair at the Canadian Centre on Disability Studies, and then in the interdisciplinary master’s program in disability studies at University of Manitoba.
Over the years, the coordinated advocacy efforts of people with disabilities have resulted in important key gains. Stienstra cites greater access to public transporation in urban centres, more inclusive education in elementary and secondary schools, and accessible information technologies that are available as part of mainstream service provisions. As well, the phsyical infrastructure, such as curb cuts and more accessible housing, helps those with mobility issues navigate the world with greater fluidity.
Stienstra maintains that the independent living movment rejected the mainstream idea that disability equals lack of independence. “Rather it has shown how independence is about being able to achieve goals and have control over one’s own life, and having assistance when and how one requires it,” she says.
No one is self-sufficient, and we need to realize that.
“When we expand our understanding of humanity and recognize the interdependence required to live a human life, including a life with disabilities, we begin to understand that independence as self-sufficiency is a fiction,” says Stienstra.
“Independence is a fiction for people with disabilities who require assistance to lead ordinary lives, as well as for people without disabilities, since we all need the assistance of and relationships with other people to live our lives.”
As a swelling demographic of our society continues to age, the rights and needs of people with disabilities will certainly become more front and centre. Stienstra looks to the future where experiences with disability are a part of ordinary life. “Each and every one of us has a body that requires accommodation; if not now, then later.”
She also wants readers to know that it is possible to live a rich life with impairments and that the right supports, including feeding tubes, are liberating and contribute to a life worth living. Stienstra says, “We all belong and have relationships of caring that are the foundation of our lives.”-Margaret Anne Fehr, Prairie Books NOW, Summer 2012