Adaptation is a Disability Practice

Chronic Illness, COVID-19, Disability Justice, Ehlers-Danlos Syndrome, Parenthood / / 5 minutes of reading

What disabled communities can teach us about surviving transformation—from parenting to pandemics to climate collapse

I’ve been thinking a lot about the Yale Global Health Review article written by 19-year-old Violet Affleck, “A Chronically Ill Earth: COVID Organizing as a Model Climate Response in Los Angeles,” and I keep connecting it to two books:

All three treat Disability Justice as a guide for responding to large-scale crises. They show how the adaptations developed within disabled communities are not only ways of surviving, but practical examples of how communities reorganize under pressure. The knowledge and skills within disabled communities matter for navigating fascism, climate change, pandemics, and other disruptions.

We saw this recently during the LA wildfires. It wasn’t the government stepping in to protect people from hazardous smoke; the mayor was actually attempting to ban masks. A group of chronically ill and disabled organizers, MaskBloc LA, quickly mobilized and distributed N95 masks to the community. In moments like this, the lived experience of disabled people often leads to faster, more practical responses.

Becoming a parent is another kind of transformation—sudden, disorienting, full of new limitations, and sometimes crisis-like. Sleep becomes fragmented. Your previously structured schedule dissolves into what I call “the new baby vortex.” Your body, time, and energy no longer feel fully your own. When I was considering becoming a parent as a chronically ill and disabled person, I felt unsure and uncertain. I had not seen positive examples of disabled parenting in media. Was it even possible? It had to be—but I found very few representations until a disabled peer counselor pointed me to a corner of the internet where disabled parents shared their experiences.

That’s where I first found Jessica Slice, the author of Unfit Parent. At the time she was looking for folks to interview about the decision to become pregnant or their experiences of pregnancy. We emailed and scheduled a call. When the day came, Jessica had to reschedule because someone in her family had COVID—limitations! unpredictability! Parenting! Ultimately, it was the people in that disabled parenting group—and an essay by Rebekah Taussig in the anthology We’ve Got This: Essays by Disabled Parents—that shifted my perspective. Taussig’s words stayed with me through our entire family-planning journey. They helped me see that my disability hadn’t left me unprepared. In many ways, it had trained me.

She writes:

“It turns out my disabled body has actually given me the precise training I need to be Otto’s mum. With time, parenting has started to feel more and more like hearing a cover of a song I’ve known by heart since I was a child.

My body and my baby are both unpredictable and take turns derailing our plans. They flourish when we lean into flexibility, imagination, and adaptability. They require patience and endurance, attention and care — they thrive when we lean into interdependence. They inspire innovation and new ways of being together; they nurture a tender, sturdy intimacy in our family; they are bewildering, magical, and demanding.“

In contrast, I’ve seen many nondisabled people struggle with the transition to parenthood—and with living through an ongoing pandemic. Often the difficulty isn’t only the disruption itself. It’s the reluctance to shift, to let go of the expectation that life should return to how things were.

But adaptation isn’t about return. It’s not about “getting back to normal” or pretending it’s still 2019. A return is not an adaptation. A return is a movement backward: a reinstatement of a prior state, often idealized as simpler or more desirable. It assumes that the past was working (working for whom I would question). But, an adaptation is a modification or evolution in response to new conditions. It’s about resilience, creativity, and change (ask me another time to talk about my complicated relationship with the concept of resilience). Adaptation acknowledges that the landscape around us has shifted and invites us to shift with it. It doesn’t ask us to go back—though grieving the before-times is valid and often necessary. It dares us to move forward differently, more fit for the world we’re in now.

This is where disabled communities offer invaluable guidance. We have been practicing adaptation for a long time. We are masters of modification, flexibility, and resourcefulness. We learn how to live with unpredictability, how to build access where none existed, and how to thrive in interdependence and community care. During my coach training, one of my mentors often said that every client is a whole, creative, resourceful person with a lifetime of accumulated wisdom. I’ve seen that wisdom most clearly among my disabled and chronically ill peers.

Each of these three works—Violet Affleck’s article, Jessica Slice’s memoir, and Leah Lakshmi Piepzna-Samarasinha’s essays—also points to the ableist assumptions, norms, and systems that marginalize disabled people. Public health responses to COVID-19 sidelined disabled people’s needs. Popular visions of the future (especially in science fiction and tech culture) often leave disabled people out entirely. And positive portrayals of parenting in media rarely include disabled parents. When we erase disability from our imagined futures and ignore it in our present, we erase wisdom, joy, and expertise in living under crisis and change.

From parenting to pandemics, disabled communities have been modeling adaptation for decades, building better ways of being, not just surviving. Much of that work centers on community care, flexibility, and collective thriving—approaches that are becoming increasingly necessary. These practices and better ways of being matter even more now. Within disabled communities, conversations about surviving climate collapse are often blunt and practical. We already know what it means to navigate inaccessible systems, respond to crisis through mutual aid, and reimagine care beyond institutions. Disabled people know that in most crises we are the first to be abandoned. Or, as Anthony Fauci put it when discussing COVID-19 in 2023, “the vulnerable will fall by the wayside.”

That kind of careless, eugenicist thinking harms everyone. Disabled communities offer more than survival strategies. They show how a society might organize itself around interdependence, access, and adaptation in the face of ongoing environmental and social disruption.