What's a life worth? CTG Speaker Sarah Jama knows there's still a lot of room for compassion in the Canadian health system, and our deeper social structures.
I spent a substantial portion of my childhood across two different provinces, alternating between The Hospital for Sick Children (SickKids), the Holland Bloorview Kids Rehabilitation Hospital in Toronto, and the Glenrose Rehabilitation Hospital in Edmonton, Alberta.
I hated the invasive surgeries and hated that my mom pushed me to attend my physiotherapy sessions. The sessions were intense, and painful at times, leaving me in tears. I took them for granted. In grade 12 I chose to decline another surgery that would have made me an inpatient in hospital for months. I wanted to graduate high school on time, and thought I was delaying the surgery for another year or two. I quickly learned that this was not the case.
My Cerebral Palsy (CP) stayed present after I turned 18, though government assistance did not. My mother and I were both astounded by the challenge to find doctors or surgeons who specialized in adulthood disabilities. There are over 60,000 Canadians living with CP. All children grow up, including those with disabilities, but it seems the Canadian medical system fails to grow with them.
"Colonialism, racism and ableism have intersected throughout Canada’s history to the detriment of our individual, community and national health."
More of the funding and services in Canada for people with disabilities are funneled toward children, leaving adults with moderate to severe disabilities floundering for support. The cuteness and helplessness of childhood disability are marketable for our healthcare system — but it fails to follow through when it comes to the rights and dignity of people with disabilities after childhood.
For example, more funding goes toward the prenatal screening of Down Syndrome versus funding for the quality of life of adults with Down Syndrome. This inequity in our medical field has been documented to pressure some doctors and medical professionals into pushing for termination of pregnancy when prenatal testing indicates Down Syndrome, without discussing other available options. The choice for anyone to have children should be a right, not just a privilege for the fully abled.
What I am critiquing is this newly emerging practice of modern eugenics: the practice of systematically funding and supporting the erasure of a single group in our society.
We saw this with the Alberta Sterilization Act which rolled out in the early 1960s, allowing people with disabilities and Indigenous women to be sterilized without their knowledge or consent. Racial disparities in our health system are also linked to ableism and the lack of disability justice in our medical system. Just last year in Saskatoon, two indigenous women were coerced into sterilization while in labor, which may be part of a larger systemic trend. After the release of a report that was over fifty pages long, the Royal University Hospital in Saskatoon released an apology for these actions.
Colonialism, racism and ableism have intersected throughout Canada’s history to the detriment of our individual, community and national health. And it’s no accident. The very first detention center in Canada was located in a hospital, linking the ‘othering’ of racialized people with the labelling of disability and mental illness.
"I worry about aging, my ability to live independently, and the strength of the rhetoric around assisted suicide in comparison to my right to life."
Today, adults with disabilities who are indigenous, black, or racialized are far more likely to be killed at the hands of a police officer or prison guard. Andrew Loku struggled with mental illness, Abdirahman Abdi had autism, and Soleiman Faqiri had schizophrenia. Moments before their deaths, their actions or cues which linked back to their disabilities, were later weaponized alongside the colour of their skin to justify their deaths. The police were called on both Carby and Abdi because of noise complaints. Faqiri was taken to a prison cell in solitary confinement when exhibiting symptoms of his disability, instead of being taken to a hospital.
We have to close these gaps. My struggle to access the medical care is no isolated incident, and is a reflection of who our country believes has a right to exist. I worry about aging, my ability to live independently, and the strength of the rhetoric around assisted suicide in comparison to my right to life.
When we consider the rates of death caused by over or under medicalization of people with disabilities and racialized people, when we look to the lack of funding to address these inequities, and when we open our eyes to the injustices still being perpetrated today, we should all feel called to action.
Many people are trying to address these systemic inequalities, including many of our leaders, through real political action. But it’s going to be hard. We need sustained public pressure. And that means it’s not enough for you to only be moved by these injustices — you have to be moved to act. For my part, I’ll be speaking at Closing the Gap: The Next 150 in Ottawa on April 6th and 7th, an annual conference put on by Upstream, a national health equity non-profit organization. I hope you’ll join me there, and be moved to action together.
Sarah Jama is a community organizer and recent graduate. She was the 2016 president of the McMaster Womanists and organized a number of events in Hamilton in relation to racism, such as the Rise Up: Rally against Police Brutality, was a co-organizer of Hamilton's first Anti-Racism Action Initiative. She served a two year term as the Ontario Director of the National Educational Association of Disabled Students, and founded the first peer-based and run service for students with disabilities at McMaster University called Maccess. Her interests include but are not limited to, critical disability theory, critical race theory, social justice organizing, and activism. She featured on CBC Radio's The Current discussing disability activism in Canad, and is speaking at Upstream's Closing the Gap: The Next 150 in Ottawa on April 6th and 7th.
Most recently, Sarah has been named by CBC's as one of Hamilton's top five most interesting people of 2016, because of her city wide advocacy and organizing. She is a recipient of the John C Holland Evleyn Myrie Political Action Award, and is serving a 2 year term on the Hamilton Immigration Partnership Council. She currently works at the Hamilton Centre for Civic Inclusion, as well as for the office of Councillor Green-- the first black city councilor in Hamilton Ontario.