After a lot of furore followed by debates and discussions on euthanasia, Canada has finally passed its royal assent on Bill C-14, its medical-assisted dying legislation that now enables people with grievous and irremediable medical conditions to commit medically-assisted suicide. However, factions of society are still debating the validity of the bill as it does not grant mercy killing to all irremediable conditions.

A Toronto-based organisation has started a campaign called Project Value, featuring stories of people who are disabled by the incurable problem of Spinal Muscular Atrophy. This comes in response to the ongoing doctor-assisted dying debate and the case of 25-year-old Julia Lamb, a British Columbian woman with SMA who is fighting for the right to die.

Lamb has been confined to a wheelchair-assisted life since she was six. Despite her illness she had a full childhood, an adolescence and she&’s now working part time as a marketing assistant. “As I look back at all I have accomplished… I feel a strong sense to forge ahead, but I can’t ignore the progression of my disease,” she said.

“I am terrified that I could be trapped in a state of physical and mental suffering that could last for months, years or even decades. Having to think about this future causes me immense physical distress.”

Lamb said she presently required personal care to get her basic errands done, be it a shower or to turn over in the bed. “If my suffering becomes intolerable, I would like to be able to make a final choice about how much suffering to endure,” she said.

Grace Pastine, litigation director of British Columbia Civil Liberties Association, who is also working for Lamb&’s case explains, “This legislation is clearly unconstitutional. It deliberately excludes a class of Canadians — those who are suffering with no immediate end in sight. How can we turn away and ignore their pleas?”

While Lamb supports medical-assisted dying to relieve people like her from the pain associated with SMA, Ing Wong Ward advocates for life instead. “We seem to be portrayed as people who are on the verge of death. But I am certainly not thinking about my death.” Ward was born with SMA and she wheels around on her motorised wheelchair. Although the disease is incurable and slowly degenerates one&’s mobility completely, yet she doesn’t want to look at it with mercy.

“Ultimately, I am more than what you see physically,” she said. “I’m a mother, I have an eight-year-old daughter, I’m a wife. I’m part of the leadership team of a large disabilities resources organisation.”

Tracy Odell, another SMA-affected person, also speaks for the positivity of life. “I was born with SMA but still I did everything in life. I worked full time from the moment I graduated from York University until the present day. With my husband David we brought two girls into the world, and so far have yielded one dancing granddaughter. I live independently with dignity because of community-based attendant services.”

She poses the question, “If I wanted help to die, would you do it because you think my disability is a tragedy? Or would you see that my life has value and talk me out of it?” She adds,   “Why are we so eager to help people with disabilities to die when there is still so much living to do?”

While many still debate about people with terminal disabilities being granted the right to die or not, Project Value is a movement that supports those with disabilities and kindles a ray of hope among them. On the Facebook page of the organisation, they state their work is “to explore a different perspective (that) contradicts the narrative about disability being a fate worse than death”..” 

While Pastine from BCCLA thinks that “the new legislation will have the perverse effect of forcing seriously ill Canadians to resort to violent methods or the ‘back alley’”, Project Value is highlighting the real life stories of several SMA-affected people and their happy lives.

As the bill was released under a strict deadline, due to the rising debates the government has promised there will be further studies and possible amendments. Canada is now at par with Belgium, the Netherlands and the US states of Oregon, Washington, Montana and Vermont in favouring doctor-assisted dying. 

India Blooms News Service