A group of Canadians are out to testify that there’s so much more to life with a disability than one of “suffering that could last decades,” as recent media coverage would have you believe.
Project Value is founded by five prominent members of Canada’s disability community meant to counter act the narrative that disability is a fate worse than death through a series of videos by people with disabilities testifying to how truly fulfilling and exquisitely varied their lives are.
“There is more, much much more, to our lives than misery, helplessness, and pain. We want to counteract the dangerous effects of those stereotypes and the prejudice that they fuel, by projecting the energy, vitality, resilience and contribution of disabled people’s lives,” says co-founder Catherine Frazee, a 62-year-old professor emerita and professor of distinction in the School of Disability Studies at Ryerson University in Toronto who has spinal muscular atrophy type 2.
The inspiration for Project Value came on June 27th when Julia Lamb, a 25-year-old woman from Chilliwack, British Columbia, with spinal muscular atrophy, put forth a constitutional challenge to Canada’s assisted-dying law just 10 days after the law was passed. At the moment, only those with terminal illnesses nearing natural death qualify for assisted-dying, but Lamb and the British Columbia Civil Liberties Association wants that criteria expanded to include “those who are suffering with no immediate end in sight.”
“My biggest fear is that if my condition suddenly gets much worse, which can happen any day, I will become trapped. If my suffering becomes intolerable, I would like to be able to make a final choice for how much suffering to endure,” Lamb told a press conference in Vancouver.
The press coverage that resulted from Lamb’s challenge described SMA as a “muscle wasting disease” and emphasized a bleak and terrible future ahead, so Frazee got on the phone with a few people with similar diagnoses and they hatched Project Value.
“I felt it was important to show people that disability doesn’t have to be a death sentence,” says Jeff Preston, a Project Value co-founder and college professor with muscular dystrophy. “While inaccessibility and lack of program funding has been a problem throughout my life, I have still gone on to live an independent and happy life, despite what my parents were told when I was first diagnosed. I want to make sure people who are currently being born/diagnosed with disabilities hear the positive side of disability — namely that you can just live your life — instead of all the doom and gloom.”
Project Value is just the latest in a series of initiatives From Dear Julianna to The Disability Visibility Project that are all pushing back against a rising tide of increasingly ableist sentiment in the world. Jerika Bolen’s “Last Dance,” the murders of 19 people with intellectual disabilities in Japan, and now this constitutional challenge, are all suddenly raising questions around the very existence of people with disabilities.
“The dialogue right now is about assisted dying but it should really be focused on assisted living,” says Sandra Carpenter, Project Value co-founder and executive director of the Centre for Independent Living Toronto with spinal muscular atrophy type one. “There needs to be equal time for the other side of the story without taking a leap into the disability ‘hero’ narrative which is, of course, equally offensive. To us, this is as absurd as people without disabilities opting for death because they aren’t world class athletes.”