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