Some people are clinging to a particular insistence that everything is back to normal. Whether fueled by grief, denial, or both, they want to leave the pandemic in the past. But this “global mass destabilizing event,” as queer disabled femme writer Leah Lakshmi Piepzna-Samarasinha (she/they) calls it, immersed us in a “disabled reality” that many weren’t—and still aren’t—equipped to recognize, let alone handle. And with the climate crisis ever-looming, Piepzna-Samarasinha believes that we are increasingly headed towards a “disabled future” where disabled people are not only the majority, but a “source of possibility and power” for everyone.
Piepzna-Samarasinha’s new book, The Future Is Disabled: Prophecies, Love Notes, and Mourning Songs, is a raw and urgent follow up to their 2018 book Care Work: Dreaming Disability Justice. Tackling topics of mutual aid, sustained care, and disability activism, Piepzna-Samarasinha wrote The Future Is Disabled in the midst of immense grief—most notably, after the loss of two dear friends, Stacey Park Milbern and Lucia Leandro Gimeno, who passed away during the pandemic. Interspersed between essays about how we can envision a world that values disabled life more than disdains it are recipes for crying eyes, anecdotes about “crip care,” and lists of questions you can ask yourself for “disability justice art dreaming.” In its entirety, The Future Is Disabled dares disabled folks to exist outside the bounds set by our ableist society by using disability justice to survive and combat “climate change, the rise of white fascism and white supremacy, and unending pandemics.”
“I refuse to participate in our own erasure,” Piepzna-Samarasinha told Jezebel, “and I think that one way, as disabled people, we honor each other not just by remembering each other on a personal level, but by actively archiving.”
What many of those outside of disabled communities don’t realize is that a lot of the practices they adopted in the pandemic have been part and parcel to disabled survival. “It was disabled people who first understood that viral load [...] is a factor in whether one might get covid,” Piepzna-Samarasinha reminds us in the book. And then there’s masking, the technology that immunocompromised people have been using to keep themselves safe while out and about, long before we ever heard of coronavirus. Yet, the general able-bodied public still felt largely resistant to these practices, especially knowing that they came from disabled people—those who are perceived to be receivers of care, not bestowers.
“People don’t know that disabled people have communities and histories and science and art and all this. They don’t know that we exist,” Piepzna-Samarasinha said. “The mainstream societal definition of disability is that we are an ugly and stupid defect to be corrected… There’s this idea that to be disabled is to have a ‘fate worse than death,’ and people internalize that.”
Take the practice of mutual aid. According to Piepzna-Samarasinha, while anarchist philosopher Peter Kropotkin put a name to the idea that “cooperation, not competition, [is] the driving mechanism behind evolution,” disabled communities have been practicing these non-transactional ways of helping one another for centuries. But as able-bodied communities tried out mutual aid for the first time in 2020 to fill gaps created by job loss, isolation, and other pandemic hardships, fewer of its central tenets were upheld—particularly, the ways in which it challenges the “charity model” of care. Piepzna-Samarasinha observed that some of the “saviorism” that plagues charity models trickled into able-bodied folks’ mutual aid, festering feelings of judgment, resentment, and plain old burnout.
It became clear to Piepzna-Samarasinha that most able-bodied folks had a very narrow understanding of what mutual aid can look like. Early in the pandemic, as mutual aid groups began to spring up in Seattle, where they currently live, they looked for ways to help. They reached out to one group that was delivering groceries to immunocompromised, disabled people. At first, the group was eager to have them, but when they disclosed in an email that they were immunocompromised, they never heard back.
“I think that’s an example of how there was very much of like, ‘We’re helping,’ as opposed to the stuff I was experiencing, which was being in a network of people with different disabilities and chronic illness, locally, but also across the country, who were like, ‘Okay, what can we do?’ and being really creative.’’ In fact, Piepzna-Samarasinha reminds us, crip mutual aid is hardly ever heroic: “Sometimes it’s just like, ‘I’m gonna send you a meme or a bad joke,’ or I’m gonna be like, ‘I have $10, go get some delivery,’ or like, ‘Let’s go for a masked walk together.’”
For Piepzna-Samarasinha, practicing sustainable care means showing up when you can, in the ways that you can. It requires ditching the sainthood model and embracing the crip model, “where even five minutes counts.” “Disabled people have a lot of fun doing care stuff, and I think something that holds ableds back is thinking it’s either you being a saint or it’s going to be a bummer,” they told Jezebel. “And we know that sometimes you gotta just take the garbage out.”
Piepzna-Samarasinha also says that “wild disabled joy” is necessary to make care work sustainable within disabled care networks. As an advocate of adrienne maree brown’s “pleasure activism,” they place a huge emphasis on how nurturing their disabled QTBIPOC (Queer Trans Black Indigenous People of Color) community has been key to not only their survival, but their overall wellbeing. Whether it’s by exploring the many facets of crip sex, “innovating ways to make bedtime feel fun,” or finding “the best accessible swimming hole within 45 minutes,” disabled pleasure abounds.
“As disabled people, we’re told we don’t deserve pleasure, [that] we just deserve this utilitarian, bland life and we’re lucky not to be dead,” Piepzna-Samarasinha said. “But a best-kept secret is we are so good at pleasure. We rebel by making these deeply pleasurable lives.”
Enacting disability justice can start in places where accessibility is often seen as an afterthought, but QTBIPOC communities have successfully “cripped” nonetheless. At the 2019 I wanna be with you anywhere show at the Whitney Museum in New York, for example, an evening that featured a wide range of disabled artists and writers, there was not only “killer ASL and captioning” and ample disability seating at the front of the room, but even a “sensory-friendly room designed by and for neurodivergent people” that had free ear defenders, pillow forts, bean bags, and coloring books.
Securing accessible housing—and housing in general—continues to be an uphill battle for disabled folks. So does getting adequate government assistance, and navigating a world that has largely decided that the pandemic is “over.” For Piepzna-Samarasinha, the path forward is clear: “I hope we continue to refuse to forget the resistance and loss of the last two years, and attend to our grief, and organize out of that.”