I’ve spent the past decade and a half feeling afraid of where I might end up living when I get older and need more care than my chosen family can provide. These fears first took root when I was a graduate student in my mid-twenties researching home care (supports and services intended to help people remain in the community where they live). My research opened my eyes to a system of home- and facility-based care that left me disillusioned and frustrated by how it persistently devalues the work of caregivers and gives care recipients—predominantly older adults, many of whom are disabled and chronically ill, and younger disabled people—the bare minimum of care.
It’s a system reliant on gendered, hetero- and cisnormative assumptions about family members filling the gaps in care it can’t provide. The more I learned, the more vulnerable I felt as a queer person without siblings, adult children or other close biological family members.
Although I was studying other people’s experiences, I came away from my graduate research convinced I would someday be left to the mercy of a system not set up to meet my needs, let alone honour my desires as a queer person.
The doctor told Ann that John had severely damaged his spinal cord and was paralyzed from his neck down. He was able to swivel his head from side to...