‘The Future Is Disabled’: Leah Lakshmi Piepzna-Samarasinha on Creating a More Humane Social Order

In "The Future Is Disabled," Piepzna-Samarasinha writes about disability justice
In The Future Is Disabled, Piepzna-Samarasinha writes about disability justice. “[Disabled people] are supposed to be the first ones to die, but we have technology and care skills that are going to end up saving all of us,” they told Ms. “The world is terrifying, but I keep betting on us because we know how to survive.”

Writer, disability-justice activist and performance artist Leah Lakshmi Piepzna-Samarasinha knows that it’s possible for society to become more equitable. They envision a future in which “people are free to be, regardless of their ability to fit into capitalist institutions.”

But they also understand that this will not happen without a concerted, well-organized effort by  diverse groups of disabled and non-disabled people of every race, gender, religion and sexual identity. 

Piepzna-Samarasinha’s latest book, The Future Is Disabled: Prophesies, Love Notes and Mourning Songs, lays out a bare-bones agenda for what is needed to make the U.S. more socially just: affordable, available and accessible housing; healthcare and pharmacare; a universal basic income for all residents; free, high-quality public education programs; and the elimination of punitive policing and incarceration.

The Future is Disabled is full of passion, compassion and fire. Its 18 chapters blur the lines between memoir, political essay, rant and eulogy, all of them united by the conviction that every body, mind, race and gender matter. 

Piepzna-Samarasinha joined Ms. contributor Eleanor J. Bader to chat about the book, the disability justice movement, and the ways that activists can support each other in the fight for a more ecologically sustainable and humane social order.      

Eleanor J. Bader: The disability justice movement has worked hard to create effective mutual aid networks and support systems for all disabled people. Still, many disabled people live in isolation.

What strategies have been most effective in enabling them to find, or even to know about, the supports that exist?

Leah Lakshmi Piepzna-Samarasinha: All kinds of online spaces, from disabled-created hashtags like Keah Brown’s #DisabledAndCute, Imani Barbarin’s #MyDisabledLifeIsWorthy, disabled TikTok, Discords, and old-school Facebook groups for Gen Xers like me, have helped disabled people who are isolated make community, and score resources and crip wisdom.

“Support” can look different than how people imagine it. A lot of times, just being able to make community online is the support people need. And the more disabled media we make, the more we can find each other.

I actually think we’re now in the middle of a disabled literary and cultural renaissance. Disabled people have also organized politically for our survival. This was incredibly hard during Trump, and by the state attempting to triage us out of lifesaving vaccine access and care during the (ongoing) pandemic. I think that activism is a place where a lot of people plug in. When you see disabled people fighting to save Medicaid, the Americans with Disabilities Act, and the Affordable Care Act, many are inspired to go and find those activists.

Bader: You write that fighting climate change, new and evolving pandemics, and the rise of fascism and white supremacy requires both an intersectional framework and an understanding of disability justice that calls out ableism and addresses the connections between misogyny, racism, heterosexism, transphobia, colonialism and imperialism.

How can activists avoid burnout and becoming overwhelmed by the magnitude of these issues? 

Piepzna-Samarasinha: I get overwhelmed by the climate disaster we’re facing. In mid-September, for example, a third of Pakistan and most of Jackson, Miss., did not have clean water after major flood disasters. Many people are increasingly numb and checked out in response.

I think it makes sense to be overwhelmed.  And disability justice says that you don’t have to squash your feelings of despair, grief, overwhelmedness to be a “good activist.” What helps me is remembering that we don’t know how the story ends. What helps me is remembering how innovative and kickass disabled people are at hacking climate change survival. We taught the world how to use N95 masks and make box-fan and furnace filter DIY air purifiers during smoke emergencies.

When Pacific Gas and Electric abruptly cut off all the power to Northern California during the 2019 wildfires, the #PowerToLive coalition, a group of disabled, fat, and/or elders in Oakland organized a mutual aid network where people could go to a house that had power to charge their wheelchairs. They also crowdsourced info about how to store insulin without refrigeration and more. 

We’re supposed to be the first ones to die, but we have technology and care skills that are going to end up saving all of us. The world is terrifying, but I keep betting on us because we know how to survive.

I think it makes sense to be overwhelmed. And, disability justice says that you don’t have to squash your feelings of despair, grief, overwhelmedness to be a ‘good activist.’

Bader: Similarly, a lot of progressive activism follows a 24-7-365 model. Can disability justice offer a different norm that respects individual limits and personal needs?

Piepzna-Samarasinha:  One of the 10 Principles of Disability Justice is sustainability. One of the performance group Sins Invalid’s core phrases is, “We move together, with no one left behind.”

You can do a lot more and be more efficient when you slow down because it means everyone can show up. When you walk slowly, elders, kids and me with my cane don’t get left behind. Plenty of people don’t join or stay active because the pace is breakneck. Disability justice is a movement where people show up as they can, even if they have five minutes a week.

Bader: Is it more effective for disability justice activists to work in “mixed” integrated organizations or in separate groupings?

Piepzna-Samarasinha: First, as pandemics, climate change, wars and imprisonment increase, we’re going to continue to hack and organize in a lot of spaces. I believe in a diversity of tactics and I think disabled folks are creative in trying different strategies that abled people would never figure out.

Patience is not my strong suit and I preserve my limited energy by not working with a ton of white, abled or neurotypical folks. There’s a lot of power and joy in turning towards each other as disabled queer/trans/BIPOC people even when there’s hard stuff. You can spend a lot of time begging white disability rights folks to get it, or abled BIPOC to get it, and you often end up tokenized or yelled at. 

I believe in alliance-building and coalition-building, and I absolutely see myself as a recruiter for disability justice, but I also don’t believe in watering down our vision or exhausting ourselves screaming into the void.

There are also attempts to hack mainstream spaces. Stacey Park Milbern, before she died in 2020, made a proposal to Google that there should be a disabled ancestor as the Google Doodle. This year, it was her. A lot of people felt mixed about this, and it was definitely weird to see my dead best friend—a revolutionary, disabled, Asian, queer activist—as a Google Doodle. But it was an amazing way to get tens of thousands of people who might have never learned about disability justice to learn about Stacey and her life. 

A lot of times, just being able to make community online is the support people need. And the more disabled media we make, the more we can find each other.

Leah Lakshmi Piepzna-Samarashinha
A Google Doodle of Stacey Park Milbern, a Korean American disability justice activist.
Stacey Park Milbern was a Korean American disability justice activist. (Google)

Bader: You write that interdependence is key to disability justice. But I also understand the push for independence—to get out from under the hand of controlling and often limiting friends or family.  Publicly supported services and home care come into play here. Are there alliances between caregivers and those who need care? What are the main issues they work on? Have they been effective in presenting a united front?

Piepzna-Samarasinha: I would call it autonomy more than independence—being able to control your life, your choices, what clothes you put on, who you have sex with.  And yes, there are alliances. Akemi Nishida writes really movingly in her new book Just Care about beautiful friendships, solidarity between care workers and care recipients and how some agencies will punish them if they’re found out. Hand in Hand and Caring Across Generations are doing incredible coalition work with both disabled people who work with personal care attendants and people who do paid care work—many of whom are also disabled—for fair wages and unionization.

We’re still in a care crisis and since Build Back Better didn’t happen, groups of disabled people and people radicalized by pandemic mutual aid are reimagining care as a human right. We just have to keep going.

Bader: COVID has brought disability into much sharper focus than it was in the Before Times. As you write, disabled folks have a lot to teach about living with pain and/or chronic illness. Have any government agencies—state, local or federal—called on disabled experts to share their knowledge and help those who are now chronically ill with long COVID?

Piepzna-Samarasinha: Not to my knowledge.

However, there are some great examples of grassroots disabled groups doing that work. Senior and Disability Action has an amazing group for newly disabled people introducing folks to each other and teaching them skills, culture, and action. The Long COVID Coalition is another group that’s doing incredible advocacy by and for people disabled by the long-term impact of the virus.

We’re still in a care crisis and since Build Back Better didn’t happen, groups of disabled people and people radicalized by pandemic mutual aid are reimagining care as a human right. We just have to keep going.

Bader: I am so sorry you’ve experienced so much personal loss, and appreciate your insights on grief and mourning. Do you think COVID has pushed the envelope on this and eliminated some of the stigma surrounding these issues? How can that envelope be pushed further?

Piepzna-Samarasinha: Yes and no.

I was just reflecting with a friend that one of the things that was helpful in 2020 and 2021, was that there was more public, mass acceptance of being depressed, grieving, and having a hard time because everyone was watching tens of thousands of people die, losing loved ones and fearing death. 

Now that we’re in the ‘What pandemic? Let’s move on and get back to normal’ era of 2022, that’s shifted. There’s huge pressure to be happy again. But the grief hasn’t gone anywhere. I think we need to keep making our own public and private grief practices and memorials to honor loved ones who’ve died. Disabled people have a lot of skill at not burying grief, living with it, and stewarding it.

Bader: It’s been repeatedly said that kids and adults need representations of themselves to feel like they belong in the world. What media—books, movies, TV shows, podcasts—do you recommend to help folks feel more grounded or valued?

Piepzna-Samarasinha: Here’s a short list:

Alice Wong’s Year of the Tiger and Disability Visibility, which just came out in plain language and for a young adult readership!

I love the kids’ book We Move Togetherand recommend Dr Sami Schalks’ Black Disability Politics, out on Oct. 31.

Then there are Leroy Moore Jr.’s Black Disabled Art History 101 and his work with Krip Hop International to cover disabled hiphop, and Keah Brown’s The Pretty One.

I really liked Dr. Devon Price’s Unmasking Autism. I also get a lot of joy out of the shows Star Trek Discovery and Strange New Worlds

Bader: Joy is absent in many people’s lives and article after article describes skyrocketing rates of depression and anxiety. Your elevation of disabled pleasure as a radical act is so important. How and where do you, personally, find joy these days? 

Piepzna-Samarasinha: Something a lot of people don’t understand is that two of the primary qualities of disabled culture are snark and prioritizing joy and pleasure, and both are most important parts of my life.

Right now, I’m temporarily living in a semi-joyless apartment but I find pleasure in chatting with people on Discord and going on walks and drives by canals and warehouses. Getting sleep. Going to the queer nude beach and the accessible COVID-safer queer sex party. Buying a lot of $6 eyeshadows from Colourpop and playing with them. The list also includes my hot pink velvet sofa and the love and comradeship of disabled, autistic, Deaf friends, especially friends I survived COVID with. Then there’s getting feral by the ocean and insisting on good food and laughter.

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Eleanor J. Bader is a freelance journalist from Brooklyn, N.Y., who writes for Truthout, Lilith, the LA Review of Books, RainTaxi, The Indypendent, New Pages, and The Progressive. She tweets at @eleanorjbader1 .