While our media and some of our politicians like to talk about returning to “normal,” Covid is still with us. Many are still sick and dying. But at the height of the pandemic, many of us figured out how to make life safer, and even better, for our vulnerable friends and relations and even for our vulnerable selves. Leah Lakshmi Piepzna-Samarasinha spent her first two Covid years of what she calls disabled isolation writing essays that she’s gathered into a book, The Future Is Disabled: Prophecies, Love Notes and Mourning Songs. In it she explores the question: What if disability justice and disabled wisdom are crucial to creating a future in which it’s possible to survive fascism, climate change, and pandemics and to bring about liberation for all? Leah is a writer, poet, and disability and transformative justice movement worker.
Laura Flanders: Can you define the term disability justice for us?
Leah Lakshmi Piepzna-Samarasinha: Disability justice is a movement-building framework that was started in 2005 by people like Leroy Moore, Patricia Berne, Mia Mingus, Stacey Milbern, Eli Clare, and it basically builds on and exists in the cliffhangers of the disability rights movement. Disability justice is an intersectional movement that centers the lives and leaderships of Black, brown, queer, and trans disabled people, and that changes what both our visions for the future are and what we understand is disability issues. Disability justice would say that, for example, police violence is a disability justice issue because, as we know, at least 50 percent of folks murdered by the cops are both Black or brown and disabled, deaf, chronically ill, autistic. We can’t end police violence and murder without dismantling racism and ableism at the same time.
LF: I find it helpful to center us in where we are and what we left before we came to this conversation. I have on my mind all the things I have to do. What about you?
LLPS: It feels odd to almost miss some parts of 2020. I don’t miss most of them, but I’m going to say what a lot of people have said, which is that there was more of a mass sense of we look out for each other in 2020 and we’re trying to work to protect each other—and where we’re at now is what I and a lot of other activists are calling the great gaslighting. There’s tremendous pressure from the state and corporations to be like, “Oh, America, go back to work, go shopping, there’s no pandemic here.” Except there’s so many of us who know that that’s not true.
LF: There were some wonderful things about the last few years that we’ve been through. Can you describe one that stands out for you?
LLPS: I’m thinking about Caremongering, which was a network started by Indigenous and Sikh women and Two Spirit people in Toronto, and it spread all across Canada. At its height, the Toronto Caremongering had 20,000 people. They didn’t know each other, and it was a lot of people who did not have a huge community or family, but it was people being like, “I made 40 packets of butter chicken and rice, and I’m in this neighborhood and anyone can come get it.” “Do you need diapers? Great, I’ve got some extra.” It’s radical hospitality, and it was beautiful. And it kept so many people alive and joyful, because they were like, “God, I’ve got food and love.” I know so many people who felt more isolated prior to Covid. They were like, “I’ve just been, you know, a single parent, sick, what have you, nobody cares, and wow, all of a sudden, there are these mutual aid societies that are coming through.”
LF: In the book, I think you break a lot of mystique about what it would be to create disabled community or community that doesn’t leave disabled people behind. Can you give us some examples for people who don’t think of themselves as disabled? What can we do?
LLPS: A point I really want to make, that’s in the title, is that with Covid we are looking at a world that, if it’s not majority-disabled yet, it’s going to be really soon. Care often gets talked about as the soup and the grocery drop-offs and “let me give you a ride” and that’s all really important. What also counts as care is doing things like the massive campaigns that disabled people did and are doing. What Alice Wong of Disability Visibility Project did with High-Risk California, which is a project she started when, early in the vaccine rollout, disabled people were not prioritized. She and other people organized to get Governor Gavin Newsom and the public health departments to be like, “OK, wait, no, we are not going to put you to the bottom of the list because we think your lives don’t matter and you’re going to die anyway.” That kind of activism is care. Pushing to change the laws around personal care attendance, making sure that personal support workers get paid above the minimum wage and get paid well. That’s an act of care.
LF: And react when the Americans with Disabilities Act is weakened or when there are new threats to it, which I understand there are in the current Congress and the next one.
LLPS: Right, I would say also with Olmstead, which is the legal challenge that was advanced by disabled people, including Lois Curtis, who just passed, who was a Black disabled warrior. Disabled people in the South, who were living with intellectual and developmental disabilities and had been institutionalized all their lives, were like, “No, we want to live in our own homes,” and they fought, and they won that. Ever since Olmstead, the right continues to be like, “No, we want to lock you back up. We want put you back in institutions like the old days,” when not only is it inhuman, not only does it cut off our right to live beautiful, rich disabled lives in the world, but it’s not even cost-effective. Institutions are jails. They cost millions of dollars, much more than being able to live in your own apartment with somebody who comes in and helps you when you need it. Being aware of the disabled issues that are out there, for people who are abled or who might not think of themselves as disabled, and talking about them, fighting for them, writing those letters, being at those demonstrations is important.
LF: Define the title of your book and talk about what you mean with “The future is disabled.”
LLPS: Alice Wong used it first as a phrase and generously gave me permission to use it as the title of my book. The bare bones definition is that in the near future, as I’ve said, most of us are going to be disabled, numerically. But what’s also true is that so often as disabled people, we are told that there’s no future for us. As Patty Berne and other founders of disability justice have said, there have always been disabled people. There’s not one way to have a body or mind. And we can be angry at things, like war and colonization and environmental racism, that do fuel some disabilities, but that does not mean that as disabled people, we’re the broken toys in the box, and that we’re useless and we need to get fixed. When I say the future is disabled, I mean that as disabled people, we are imagining, in the worst conditions, futures where not only do we exist, we are thriving, we are in leadership, and we are sharing the tools that everyone’s going to need to survive. I’ll give a couple of examples. I’ve lived on the West Coast for 15 years, and for the last five years, there have been intense wildfire smoke emergencies. If anyone’s used a Corsi-Rosenthal Box, which is that hack where, if you can’t afford a HEPA filter, you get a furnace filter and put it on your box fan. Disabled people invented that. Disabled people were the first people who were like, “Here’s the different kinds of masks. Here’s how you clean the air in your house. Here’s how you take care of your mental health, and here’s how you take care of each other.” Everything from that to the kinds of radical shifts towards care that is abundant is stuff that we’ve been practicing. Everyone’s going to need that if we’re going to make it.