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.
In the United States, over a quarter of the total population lives with a disability, according to the Centers for Disease Control and Prevention (CDC). And while dealing with the new coronavirus pandemic has unleashed a host of challenges for pretty much everyone, this time can be particularly challenging for people with disabilities.
People with disabilities don’t seem to be inherently more likely to get COVID-19 or experience severe complications from it, the CDC says. However, people with disabilities are three times more likely than people without disabilities to have conditions like diabetes, heart disease, and cancer, and this kind of underlying health issue is a risk factor for more severe COVID-19 cases.
Beyond that, “Many of us cannot practice social distancing from the people that assist us with our daily activities,” Alice Wong, founder and director of the Disability Visibility Project and editor of the forthcoming book Disability Visibility: First Person Stories From the Twenty-First Century, tells SELF. Wong also highlights that existing inequities for disabled people are exacerbated in the COVID-19 context. “Many of us do not have stable housing or reserves to pay for additional costs such as grocery delivery,” she says.
Even worse, the ableist perception that people with disabilities have a lower quality of life can have real life-and-death consequences in a hospital setting. Disability advocates have recently pushed back against various states’ medical guidelines for rationing potentially lifesaving care based on factors like disability. “Many of us are seen as disposable and ‘acceptable losses’ as the country eagerly tries to revive the economy,” Wong says. But people with disabilities should never be seen as tolerable sacrifices—in this pandemic or otherwise.
I wish I could say I’m surprised about any of this, but I’ve witnessed the impact of ableism from a young age. When my mom had her first brain aneurysm 15 years before her death, neurosurgeons performed multiple brain surgeries to save her life. Against what I’d been told were 2% odds of survival, she awoke with her dominant side paralyzed. My mom was told she would spend the rest of her life in a wheelchair, but she pushed herself to walk with a cane. She relearned how to eat and to write with her nondominant hand. But finding work was challenging, friends stopped coming by, and navigating the world—an obstacle course of physical challenges and social judgment—led my mom to isolation. Even worse, by working so hard to be self-sufficient, my mom appeared less in need of government-funded home health care services.
Yet through all of the difficulties, my mom essentially remained the same woman who gave birth to me. My mom was still as much of a lawyer as she was before the brain injury. She was a stubborn yet whimsical Pisces who wore florals and pastels; a daydreamer who loved gardening and arguing in equal measure. Her only working hand (despite it being her nondominant one) was still drawn to the keys on her digital piano. It hurt, then, to watch my thoughtful, musical mom leave the piano in tears, unable to match the notes on the page to her fingers on the keys. As the years of shame, isolation, and inadequate assistance took their toll, her disability started to overshadow all the other parts of her.
“Disabled people still have to fight for their rights to live in the community and for access to public spaces and services,” Wong explains. To find evidence of systemic oppression, you’d only have to look at the glaring disparities in voter turnout, education, and employment rates, Wong says. And of course, this shows up in health care settings as well. In fact, the World Health Organization has identified several areas where governments could improve health-related outcomes for disabled people, such as better access to health care, job training for providers, and more adequate research and funding for disability-related issues. When I’m forced to contemplate whether my own mother is “now freed from her suffering,” what I really question is whether she would have been in such pain had she received the social support and validation that she needed.
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. When I was a teenager, classmates would assume my mom was my grandma because she walked with a cane. As a young adult, I stopped telling new friends about her disability. My embarrassment led me to silence the core of my identity: being my mother’s daughter. I unknowingly created a life in which I would process her death alone, as I now have few witnesses of the life I shared with my mother, the ways we took care of each other.
I carry guilt for making my mom invisible, but I also see how I internalized larger societal views. This dichotomy makes me think about younger caregivers who, in the face of a global pandemic, might not have the confidence, access, or stamina to confront an already strained health care system. I fear that the newly bereaved will feel isolated in their grief, as I have. But my hope, as new caregivers emerge en masse and many people become mourners, is that society begins to dismantle the ableist infrastructure that impedes health—and that we as caregivers have the courage to do the same.
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