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Blog post by Augustin Hamilton (Quebec Life Coalition) — Photo: Serhii/Adobe Stock

Joey St-Jean has been in a long-term care facility for four years. He suffers from spinal muscular atrophy, a genetic disorder that causes progressive muscle weakness and loss of control. He is severely disabled and needs assistance with daily tasks.

Before moving into the facility, he lived with his grandparents. "Before moving into the facility, I was happy, motivated, and determined. I had plans for my life, my education, and my career. I had dreams", he told La Presse.

However, placed in an "intermediate care facility", he does not feel happy there. The staff does not have time to tailor care to patients’ preferences. "We have to constantly adapt to the staff because they don't take the time to talk with us about our situation, preferences, and needs."

In this situation, he feels dehumanised and alone. "I feel like a number. I don’t feel loved, and I don’t feel alive".

In an attempt to escape this situation, Joey launched a fundraising campaign on GoFundMe, managing to raise $22,000. Despite this, his efforts to pay for an apartment outside the government system and hire someone to care for him have been unsuccessful.

Unfortunately, the limited resources available to people with disabilities like Joey greatly restrict their housing options. Moreover, apartments with care provided by nurses and caregivers are extremely rare.

Joey is currently on a waiting list for Habitations Pignons sur roues, a charitable organisation offering independent living housing with in-home support services. However, demand likely exceeds the number of available spots by '100 times', according to Martin Blanchard, a community organiser for Moelle épinière and Motricité Québec. Mr Blanchard, who is well aware of the resources available in Quebec, is dismayed by the lack of solutions available for people with disabilities.

Having experienced the system’s shortcomings firsthand, Joey admits: "I feel very lonely and I have moments of depression. Anyone in their right mind can see that the system doesn’t support disabled people. It really takes a toll on your morale".

Discouraged by his powerlessness in the face of the healthcare system, Joey St-Jean filed a request for euthanasia two weeks ago. As he is not considered "terminally ill" due to his estimated life expectancy of 35 years, his request will be reviewed after a 90-day waiting period.

Will his request be granted? Many Canadians have requested euthanasia because they could not find housing adapted to their needs or access the care they required. Some have even been offered euthanasia instead of care.

Joey St-Jean’s distress should make us reflect on the loneliness experienced by disabled people and the elderly. The healthcare system they are caught in is clearly inadequate and will likely not improve in the near future. Therefore, it is up to us, to the best of our ability, to come to their aid.