During that first summer of the pandemic, I sat in front of my computer in my childhood bedroom, FaceTiming my best friend from undergrad, Haley. We were both crying. I was hurt that she’d attended a bachelorette party in Lake of the Ozarks, a place which would later be deemed a COVID hotspot, while I was stuck at home with my parents, sheltering in place to keep my compromised respiratory system safe. We wanted to talk through it in real time, make sense of the broken pieces and work to put them back together.
I had moved home to Iowa when COVID hit, away from my apartment in Lawrence, Kansas, where I lived with the help of a team of caregivers, away from the University of Kansas where I was getting my graduate degree. “I’m sacrificing so, so much to not get sick,” I said to Haley, as the tears made angry streams down my cheeks. “The more that people disregard precautions, the longer I’m going to be stuck here.”
I wanted her to see that the sacrifices I was asking her to make were not comparable to ones I was forced to make in order to stay alive.
“I know,” she said. “I know. I’m sorry.” She swallowed, still crying. “I just — I don’t want this to put a wrench in our friendship.”
I didn’t have an answer for this. I didn’t want it to either. Haley had been one of my first friends in college. We’d seen each other through a lot. But after we ended the call, it didn’t feel like we’d reached a resolution. It was painful and open and sharp. I was still hurting.
According to the CDC’s COVID-19 Death Data and Resources Page, 94% of COVID deaths have been of people with pre-existing conditions. The term “pre-existing condition” can mean a lot of things, just like the term “disability” can cover a wide range of lived experiences. People with conditions that affect their lungs, immune system, or heart are at a much higher risk of severe illness or death from the virus, whether or not they identify as having a disability.
I have Spinal Muscular Atrophy, which, in the context of COVID, translates to severely compromised lungs. For the last 18 months, I’ve interviewed disabled and chronically ill people about their experiences of the pandemic as part of the COVID Disability Archive. Roughly half of the individuals I’ve spoken to have felt strain in their relationships.
I need other people to survive. I believe we all do, but this reliance is particularly obvious for me, a disabled woman who depends on other people to both stay alive and live — two separate things. I need someone to get me out of bed in the morning, to help me prepare food, to place the mask of my breathing machine on my face. These are acts of staying alive. But I also need someone to help me re-pot plant clippings, to put my computer in front of me so I can write, and to strap my wheelchair into my wheelchair-accessible van and drive me. These are acts of living.
Before COVID, I’d never faced such blatant disregard for disabled and chronically ill life. I watched friends and family members — people who said they loved and cared about me — take part in activities clearly linked to spreading the virus, like eating in crowded restaurants and attending large parties. These choices felt like betrayals, and each new one stung.
In the early days of the pandemic, I had a conversation with a friend who has a similar condition to mine.
“How do you do it?” I had texted her. “How do you continue relationships with people who keep showing that they don’t care?”
“Oh, friend, I know,” she had written back. “It’s so hard.”
“I can’t just cut people out of my life. I can’t do that.”
“Oh, I can’t either. I’ve just had to distance myself from people for a while.”
In November 2020, I interviewed Ty Dykema for the COVID Disability Archive. Dykema is an artist living in Grand Rapids, Michigan, who also has Spinal Muscular Atrophy. Prior to the pandemic, he often spoke at local events. “It felt, at the time, like it was really impactful,” he said of his activism, which focused on making the DIY music and arts scenes more accessible. “Everyone was on board with live streaming shows for a while, something I’d clamored for, for years prior to the pandemic.”
But it didn’t last long: Venues big and small returned to gathering in person, performing in inaccessible locations, and abandoning streaming altogether. “Some of those same people who it seemed I’d made an impact on are now the ones who are just discarding my words,” Dykema said. “That’s where a lot of the hurt comes from. I thought they were understanding, and now it seems like either they never understood it or maybe they’re putting their own desires in front of my needs.”
Disability activist Charis Hill has ended relationships for similar reasons. “When I witness someone I know or love doing something that endangers people like me, like not masking, it feels violent,” they told Bustle recently. “There are complicated issues with public and private relationships, [in which] disabled people are forced to decide whether to enter situations that have been made unsafe for them.”
I believe I have a right to exist safely in public spaces. Do others have an obligation to make that happen? What do we owe each other, as humans, as friends? Do we owe each other a chance at living, and how much should we change our lives to do that? Alternatively, do we owe each other forgiveness and the benefit of the doubt, and if so, to what extent?
As the pandemic has gone on, COVID mitigation has become a difficult balance between individual and systemic accountability. When the CDC “puts the onus on high-risk people to protect ourselves,” as Hill writes, it shifts responsibility away from inadequate public health systems and on to individual people. For me, it can be hard, then, to navigate my expectations of others.
Hill has had a few good conversations that have led friends and chosen family to change their behavior, like wearing masks more frequently and forgoing large festivals. One friend, who sets meetings for their co-workers, chose to stop scheduling in-person work events after talking with Hill. Still, the circle of people they were close to before the pandemic has shrunk. Their online community of disabled autistic queer people, however — all identities the activist shares — has grown.
In her 2003 essay “Unspeakable Conversations,” the late Harriet McBryde Johnson recounted her experience with the moral philosopher Peter Singer, who believed that disabled babies should not be born and that adults should be allowed to kill them at birth. The year before, Singer had invited Johnson, a disability rights lawyer, activist, and writer, to speak to his class at Princeton University. What she was greeted with confounded her: Singer treated her like a human being and adult — something she wasn’t used to from the majority of people she interacted with as a visibly disabled wheelchair user.
In her essay, Johnson wrestled with his polite behavior, ultimately deciding that if she were to define Singer as a monster, she would also have to include anyone who believes “disabled lives are inherently worse off” as monsters as well, regardless of their outward civility. This would extend to people she interacted with daily, including some of her family members and nondisabled friends, including the people she relied on to keep her alive.
I used to see Johnson’s conclusion as naive, hung up on the harm of Singer’s ideas and failing to comprehend the ripple effect that classification would have on Johnson’s day-to-day life. But now my reality has changed, and with it, my perspective: She was doing what she had to do to survive.
Today, people with preexisting conditions are dying at appallingly disproportionate rates. Even if people agree that Singer’s beliefs are horrific, if they take part in activities that spread COVID, is the impact any different? Whether or not someone consciously thinks “I don’t value disabled life enough to make a sacrifice,” their actions communicate where their values lie. In some ways, I’d rather deal with the Peter Singers, because their belittling of my life is out in the open, instead of hidden behind “I love you” and “of course I care about you.”
And yet, here is the eternal conundrum: If I ended relationships with every person who devalued disabled life over the past few years, I’d have very few people left in my life. I also know that cutting myself off from people I love for this reason feels like admitting defeat. It feels like bowing my head and quietly accepting society’s wish for me to stay shut inside.
In some ways, I’d rather deal with the Peter Singers, because their belittling of my life is out in the open.
Earlier this week, a new study found that nearly two-thirds of Americans say their lives are either “completely the same” (12%) or “somewhat the same” (54%) as they were before the pandemic. Mine certainly isn’t, and perhaps never will be. Although I’ve started doing public activities post-vaccination, I approach meetups with a high level of caution: I ask friends to mask around me or test before, and I only eat at restaurants outside, where I can be spaced out from other tables. The horror of watching my country turn a blind eye to my community going through hell has yet to leave my body.
This isn’t an advice column. I only know what’s working for me: understanding how our systems set people up to make unsafe choices; redrawing boundaries where they’re needed; and allowing my feelings and expectations to change. And at the end of the day, if a friend who’s hurt me shows they’re not willing to really listen, I’ve let them go. I can only expend so much energy explaining why I want to live, why they should want this too. I owe it to myself and my community to walk away from painful dead ends.
Thankfully, I have others in my life who are willing to have hard conversations. The tearful FaceTime with Haley was not the last time we discussed these issues. Our conversations after that call were still sometimes hard and painful, but we worked through them. Over time things started to feel easier. During one phone call, she told me she’d made sure her other friends understood how serious the pandemic was for me. Another time, she told me she’d suggested some tangible safety tips to her family and friends. I felt myself relax, swallowing grateful tears. She was clearly willing to not just reflect on and change her own behavior, but also to advocate on behalf of disabled and chronically ill people.
A month or so later, we met at a park near my parents’ house, each wearing masks under an Iowa sunset. I knew Haley was listening to me, just as I allowed myself to listen to her. It felt real and good, and we talked and talked. I felt seen and understood, hopeful again, at home in this friendship.
Just as the pandemic has yet to come to an end, I don’t see any of the decisions I’ve made regarding relationships as final. I hope that things will continue to shift, and that moments I once saw as endings will reopen. This hope allows me to survive in the face of continual disregard for disabled and chronically ill lives, and that survival, I know, is no small thing.