Monday, July 23, 2012

Embracing Disability as a Valued Part of the Human Condition

The recent ruling by British Columbia's Supreme Court to allow Gloria Taylor, a woman with a disability, to end her life has profound impacts for the disability community. While much of the public discourse around this issue is framed in terms of individual choice, the issue of suicide (assisted or otherwise) and disability extends beyond individual cases, as this debate reinforces the notion that disability is automatically linked to a reduced quality of life. 

Rhonda Wiebe, who co-chairs the Council of Canadians with Disabilities' (CCD) ending of life ethics committee wrote a brilliant and eloquent piece in the Winnipeg Free Press that captures the impact these kinds of cases have on Canadians with disabilities. I would encourage anyone wanting to learn more about the disability communities views on this issue to read this piece. 

To add to this issue, I want to share my own discomfort with this debate. Having a sibling with Down syndrome at a time when technology to screen and abort children with Down syndrome is met with overwhelming approval (over 90% of those who learn their child has Down syndrome through these tests will abort), has made the 'quality of life' debate that much more important to me. 

The assumption is almost always that having Down syndrome means a life not worth living. I can assure you that this is not the case. Our peers with Down syndrome are valued and contributing members of society. Down syndrome does not condemn individuals to a life of pain and suffering, nor does its presence disrupt families, or drain communities of resources. Yet, when the issue of prenatal screening is debated, these are the misconceptions that those unfamiliar with Down syndrome tend to embrace as the truth. These notions in turn inform public perception and policy and negatively impact the lives of those with Down syndrome. 

The foundation of current discourse around disability and quality of life issues is based on misinformed, negative, and stereotypical notions of disability. More problematically, we have excluded people with disabilities, who are the true experts in lived experience, almost entirely from this debate. Including these voice and their lived experiences would surly allow us to have a more informed debate.  

Tuesday, July 3, 2012

A Legacy of Exploitation: Intellectual disability, unpaid labor, & disability services

The New Politics Summer 2012 issue has a symposium on Disability Rights. 

My piece, "A Legacy of Exploitation: Intellectual disability, unpaid labor, & disability services", takes a historical look at the legacy of unpaid work for persons with intellectual disabilities. 

While I'll be adding more as my own research progresses, this piece provides an overview of the issue of unpaid labour and intellectual disability.