If I’ve learned anything in the five years since my mom died, it’s that grief is exceedingly difficult to communicate. Add ableism to the mix, and the conversation becomes even more challenging. Take, for example, an encounter I had with an acquaintance a few months after my mom passed away in 2015.
Initially, the person was surprised by the news, and rightfully so—56 is a relatively young age to die. But then I mentioned that my mom had been partially paralyzed from a brain aneurysm she’d had when I was 8 years old, and my acquaintance’s expression changed. Relief washed over their face. “Well, at least she is no longer suffering, and you’re free to live your own life,” they said.
At that moment, I was desperate to reignite their shock because—as her daughter and primary live-in caregiver—it was shocking to find my mom unconscious on our living room floor, while outside, birds chirped and the streets buzzed with late-Friday-afternoon energy. When we arrived at the emergency room, doctors ultimately concluded that she had experienced another brain aneurysm. An hour before, I had been thinking about what I would make us for dinner, and now I was supposed to let my mom die? She remained alive in a coma until I decided to take her off life support the next day.
Years before the new coronavirus pandemic, I got the overwhelming sense that my mother’s life—and my grief—was a burden rather than something beautiful, complicated, and worthy of acknowledgment. Now the pandemic is exposing countless existing cracks and biases in the health care system and in society at large, and my mom’s experiences tell a small part of that story, even though she passed before the coronavirus wreaked havoc on life as we know it.
As my mom’s identity was reduced to her disability, our relationship was reduced to live-in caregiver and dependent. Perhaps this explains why her death could be perceived by some as “freeing” me because I’m now able to live my own life. But here’s the thing: Caring for my mother was not a life unfulfilled. The everyday tasks—making my mom breakfast, preparing her daily medications, helping her get dressed—gave me purpose. Duty and love were intertwined.
These offhand comments, meant to console me, actually reflect the ableist culture that pervades our society. But I wasn’t immune. While I loved my mother deeply, my own ableism manifested as an unspoken shame toward the ways we didn’t fit in.
At first, my mother, the poet Anne Atik, had seemed just ordinarily confused. Then, very gradually, the confusion took on a pathological aspect. She...