More than ever, isolation of institutions is no solution to COVID risks

By Taylor Hyatt
Euthanasia Prevention Coalition board member & disability rights activist

Taylor Hyatt

Much ink has been spilled over the state of Canada’s long-term care homes since the coronavirus pandemic arrived here. At first, it was understood that only the frail elderly, or those who had a “pre-existing condition” – in other words, an illness or disability – were at risk of becoming seriously ill. Therefore, it has become popular in some circles to suggest that these populations are safest in the facilities where they already live.

Unfortunately, this line of thinking is based on, at least, a few erroneous assumptions. 

First, “life” in an institution (or confined to one’s home for reasons of disability, while non-disabled people are encouraged to move freely) is not well-intended protection – it’s segregation. Besides being inhumane and a tremendous step backwards for disability rights, true segregation is impossible since disabled people rely on personal support staff. Like any other human being these staff also have social lives and needs that cannot be met within the facility; at some point, they must leave. There is still a chance, then, that they could contract the Coronavirus and carry it into the workplace. Second, extremely common conditions leave people of all ages at increased risk of complications. Finally, not everyone residing in an institution is an elder.

Chyanne

Chyanne, a resident of Midland Gardens Community Care in Scarborough, is the same age as me – 28. She moved into the facility in 2017, a year after acquiring her disability in a bus accident. Even before the pandemic, life in the facility left much to be desired. She has noticed “bruises and injuries on her fellow residents.” She has been documenting meals, which are “bland” and hardly filling. One morning’s breakfast consisted of “pre-packed fruit cups and muffins, with a single hard-boiled egg” – especially unappetizing for a woman who is hardly ever seen without a Starbucks cup in hand. She also sees a lot of death. In her words, it’s like watching her “grandmas and grandpas” pass away, and she remembers every one.

Midland Gardens breakfast

CBC Marketplace found that from 2015 to 2019, “her home (Midland Gardens) had 212 violations of the Long-Term Care Homes Act and Regulations. [That makes it the home with the most violations in Toronto [and] third-highest in Ontario.” Midland Gardens repeatedly violated the minimum standards for long-term care in Ontario. There were “infection control issues, injuries due to falls, medication errors or storage issues, abuse, and neglect.” Of the 632 homes for which there are records, 538 — or 85 per cent — had repeat violations…and faced no consequences from provincial authorities. Again, all of this took place before the pandemic began.

When the coronavirus reached her facility, Chyanne felt like “[she] was in a fishbowl, waiting…to get it.” At the beginning of May, she lost the ability to taste and smell. However, staff didn’t take her concern seriously, nor did they use proper protective equipment. They called an ambulance on May 17 after she had a dangerously high fever. Chyanne stayed in the hospital for a few weeks, relying on oxygen, until she returned to the institution on June 10th. Months later, she still has “breathing issues,” and struggles with being surrounded by death. She's “desperate” to reach the top of a waiting list for a proper home, but has a mission in the meantime: “accountability” for places like the one where she now lives.

Jonathan Marchand

Chyanne isn’t the only disabled Canadian fighting to leave institutional living. Earlier this year, Jonathan Marchand locked himself in a cage in front of Quebec’s National Assembly, symbolizing his “captivity” in a long-term care home. His goal was to meet with provincial government representatives to discuss the creation of a self-managed personal assistance program. (Government programs in Manitoba and Ontario – to name just two provinces – already offer financial help for people with disabilities to hire, train, pay, supervise, and fire their own support staff.) 

Daniel Pilote

In 2017, Daniel Pilote became the lead plaintiff in a class-action suit against the Quebec government, meant to compensate long-term care residents living in “shameful” conditions. (The text of Mr. Pilote's complaint is available online.) He’s compared his experience to living in a prison without being guilty of a crime. At times, the humiliation, depression, and abuse Mr. Pilote has faced has even “affected his desire to live.” Both have remained in the news as they cope with pandemic-related restrictions at their facilities.

As I write this, I'm cooking a huge pot of tomato soup. My spoiled cat is trying to climb in my lap to steal a piece of bacon. I'm thinking about what to write in a letter to a friend, which I’ll probably stay up late tonight to finish…and of course, all good writing requires a cup of tea in hand. I make all of these choices for myself, along with more fundamental ones – what to wear, and when to wake up, for example. None of this would be possible if I lived in an institution. No wonder it’s becoming increasingly common for people to say they would rather die than move into one.

None of the demands made by these advocates are new. Disability rights activists have been promoting self-directed home-based supports since the 1960s. The most popular reasons given for requesting euthanasia include ability “to participate in activities that made life enjoyable” or a loss of autonomy – and here’s a fix. Lives could be saved if only our society was willing to put as much work into allowing people to thrive in their own homes – on their own terms – as it does into permitting death.