where do we go from here? a roundtable from some disability justice organizers in this the only moment in time
Leah Lakshmi Piepzna-Samarasinha
Something I keep thinking this year is, where do we go from here? There’s been a real “what the fuck?” and “what do we do now” vibe out there in criplandia and DJlandia. Things are beyond intense: fascism is rapidly stepping up the pace of its attacks, with hundreds of anti-trans bills that increasingly single out neurodivergent trans people for extra levels of exclusion, anti critical race theory laws, the stripping away of our access to abortion, and ever-present killing violence against Black people, including the May Day vigilante killing of beloved neurodivergent Black artist Jordan Neely on the New York City subway.
At the same time, disabled life often feels like living in the Twilight Zone, if you don’t give in to the overwhelming pressure to “forget” the pandemic. As of this writing, we are a week post the World Health Organization and the White House declaring the global and US pandemic emergencies “over”–even though a thousand people continue to die in the US every week from COVID and the head of WHO admits that one person dies every three minutes from COVID globally (that we know of). Many people refer to “back when COVID was happening,” erasing the millions of people who have died and the millions of people with Long COVID who are, in the words of activist group ME Action, “still sick, still fighting.”
To continue to live, be awake and resist as disabled people in these conditions is difficult, to put it mildly. Most of us are also holding a shit ton of unprocessed grief which makes everyone’s energy pretty flatlined. Skyrocketing prices make it hard to just get by, not to mention the recent decrease in SNAP benefits since the federal public health emergency orders are “over.”
And, the drop from the intense and hopeful pace of organizing we were doing in 2020-2021 is a tough one! People are definitely organizing, but there’s also a feeling in the air with many people I know of, are we fumbling? What can we possibly do that is big enough to defeat this?
To try to speak to these questions and this moment, I reached out to some disabled BIPOC people doing disability justice organizing to ask where their work, heart, spirit, dreams and fears were at right now. I wanted to try and move out of feeling stuck and like nothing we do is enough to a place of curiosity about disabled responses, and to lift up that the many kinds of work we are doing as disabled people to resist is real. I continue to have faith in disabled innovation in the face of crisis and a lack of solidarity from parts of the abled left. I hope other disabled folks struggling with similar questions can gain grounding, ideas and inspiration from these examples of many different actions disabled people are taking to cancel the apocalypse make a disabled free future present.
Please note: responses have been lightly edited and condensed for clarity and space.
What are your name and pronouns, any ways you identify you want to share? Where are you located?
Tasha Fierce, they/them/the divine feminine, Black queer fat nonbinary disabled mad autistic femme, Tongva/Kizh land (Pasadena, California)
Aimi Hamraie: they/them, diasporic Iranian, Southern, nonbinary, trans, disabled, neurodivergent, Autistic, chronically ill, Cherokee and Chickasaw land, Nashville TN
Sami Schalk, she/her, fat Black queer disabled femme, pleasure activist, educator & writer in Madison Wi
Bri Joy Yakshini-Moore Ze/Zir, Black, Jamaican-American, nonbinary trans, disabled, neurotangy, alien-prince proudly from The Bronx but based in Los Angeles, CA.
What’s the work you’re involved in?
Tasha Fierce: Art/writing/culture work, disability justice political education, mad/neurodivergent organizing and political education, DEI, mad/ND & disabled peer support. I work with the LA Spoonie Collective, a group of disabled people in LA.
Aimi: I am a scholar and designer, and my work takes a disability culture approach to accessibility. I teach at Vanderbilt University and also direct the Critical Design Lab, a collaborative of disabled designers, artists, and researchers. I’m an organizer in my local community.
Sami: Research, writing, & higher education.
Bri: I’m a podcaster, poet and budding griot. My podcast POWER NOT PITY has been amplifying and preserving the stories of disabled people of color since 2017. I’m also currently writing a collection of poetry documenting my journey to top surgery and beyond called Breakingthrough/Breaking Point.
Where do you think we should go from here, at this political moment?
Bri: I definitely think it’s time to underscore the importance of Black and disabled trans leadership. In today’s current political climate where trans people are being targeted all over the country, I really do believe in the unique power that Black and disabled trans people have to offer. We are just incredibly and unfairly under-resourced and go unsupported all the time. Too many of our community members–both globally and at home–are suffering and I’m sick of it.
Aimi: My current political moment includes the reality that the world has “moved on” from COVID-19 as if the pandemic never happened. I am working on building networks of solidarity with other people who, like me, are still masking and testing regularly. I’m organizing a Mask4Mask group in my community that builds on earlier work I did with the Nashville Disability Justice Collective, the Nashville Mutual Aid Collective, and the Accessible Campus Action Alliance.
My current political reality in the state of Tennessee also includes a Republican supermajority that has banned abortion rights, trans healthcare for minors, drag shows, and a number of other things while also taking aggressive inaction around gun violence, even going so far as to expel members of the legislature for supporting their constituents. I share this because things feel very hopeless on the ground here, and everyone I know has commented lately that it feels so much worse than usual, even for those of us who are from the south and lived here all our lives.
Where do we go from here? Honestly, I think we keep going. We do what we are already doing–keeping ourselves and each other alive, being strategic and creative about how we expend our energy, finding resources even when the barriers seem insurmountable, feeding each other, finding laughter, insisting on joy and pleasure, producing culture and inviting others to join us. At least for this next little bit.
After that, I think we try to figure out what we want in the long term, and what they want in the long term, and do what we can do to make our version of the future more likely. I have been thinking so much lately about a project Alice Wong, Jen White-Johnson, and I have been doing called the Society of Disabled Oracles. It’s based on Alice’s idea about disabled people being oracles who can predict the future–because the worst parts are already done to us and the best survival strategies are ones we already know how to do. I want our imagined futures to be irresistible, and a lot of the things I work on have to do with showing that to people who haven’t yet gotten to imagine it.
Sami: There is a lot of disability doula work to be done with newly disabled folks, particularly those with long COVID. We have so many new community members who need support & politicalization. Gently bringing these folks, especially people of color, into disability identity or disability political community feels super important for the long term struggle as these newly disabled people need the frameworks, knowledge & skills we have collectively.
Continued attention to healthcare access and quality feels important since our system remains strapped for people & resources.
I also think it’s absolutely essential that we bring a disability justice lens and the support of the disability community to the current attacks on trans people and to gun violence. In terms of trans folks, it’s clear the right wing Christians are using mental disability against trans people (and increasingly queer people and gender benders broadly), claiming they need to be fixed. It is critical that disability justice workers partner with trans rights workers to ensure that the response to this is not ableist, not claiming able-mindedness as the basis for one transitioning or not and to resist that stigma.
In terms of gun control, I think we need a massive national conversion about the mental health impact of school shootings on now multiple generations of students. Kids who lived through elementary and high school shootings are now seeing shootings on their college campuses. This is a disability justice issue as only the most privileged are able to receive the mental health support they need to process and heal while folks in poverty and folks of color may continue to live with unrecognized PTSD and related mental disabilities.
Tasha Fierce: This is already being done, but cross-movement solidarity, particularly around mad/disabled and trans communities and the intersections thereof, and climate justice. Culture work, always, writing narratives to counter the fear-and-grief-based fascist narratives. GRIEF SUPPORT, in my humble opinion one of the drivers of fascism is unprocessed grief around the loss of old ways of being, and of course that creates even more grief in 2SQTIBIPOC communities as we are lashed back against. Configuring networks of care, shoring up mutual aid networks, all that building the new world in the shell of the old ish. This is all coming down, it’s just about who and what survives and I want to make sure as many of us in my communities make it as possible.
What political and cultural (or other) strategies and organizing do you think we should do right now?
Aimi: I’m glad that you asked about strategy because this is where I hope to see the most opportunity. Those who seek to harm us are extremely strategic–they have thought several steps ahead. It can often feel like we are on the defensive. But there are strategies all around us–mass mobilization is one, but so is people being willing to be disruptive even if it means losing something.
There are three Tennessee state representatives who were ejected from office this week because they failed to follow the rules of order when demanding that their constituents’ protests be received. Some people may think this is a loss, and it is in many ways. It is absolutely wrong and anti-democratic. And also, they were willing to put their jobs on the line. And also, they are getting national attention. And also, what happened to them is showing the accumulation of harmful policies that include gerrymandering and voter disenfranchisement. [Edited to add: The Tennessee Two came back to office because of massive public protest demanding their reinstatement.]
We in the West should be learning from and in solidarity with Iranian activists. The conditions they are fighting against are what the U.S. could be like in just a few years if there is a theocratic takeover of government. I think so much about the young people in Iran who have felt like they have nothing to lose and have literally put it all on the line. Women removing hijabs, men being in solidarity with them, more visibility and support for queer Iranians, university walk-outs, and nation-wide general strikes of major industries. There is so much that we in North America (and people like me, in the Iranian diaspora) can learn from them.
What did you learn from the last few years of COVID organizing and surviving?
Prince Bri: Whew, what hasn’t the pandemic taught me? I’ve developed into an entirely different person since the whole thing began. With the help of a couple of really influential support groups, lots of writing workshops and therapy, my emotional intelligence and writing confidence is through the roof! I know myself much better than I ever have and I love myself as much as I’ve ever loved myself.
Tasha Fierce: That abled people ain’t shit? That even disabled communities will bend under social pressures to drop mitigations? It’s been wild watching it all fall away. But I mean, that’s life under capitalist white supremacy and individualism and whatnot.
OK, on the bright side, those moments early in the pandemic where we came together in mutual aid and eventual uprising were amazing and beautiful and full of possibility and really, I want to live in them again. From that I learned that another world truly is possible. I guess it’s just, how can that world be more than a bubble when the gravity of these systems of oppression is dead set on collapsing it. How we can make it last without some kind of revolutionary flashpoint, I don’t know. I’ma try to keep holding on to those moments, though. I don’t ever want to forget what that felt like.
Aimi: Disabled people already know how to do it because we have been doing it. Disabled people already know how much it needs to be done because we have been told no over and over again when we have asked for it. Disabled people have created cultures and technologies for keeping each other safe and alive in horrifying conditions.
When the pandemic started, I learned that there was a wide chasm between my experience and those of people who weren’t disabled (yet). I knew how to do things and my disabled friends knew how to do things like teach our classes remotely, have meetings remotely, check in with each other, make each other food, filter our air, make or order masks. We slid into them and tried to share what we could with others. A little blog post I wrote about how to do accessible online teaching was downloaded like 200,000 times, I think because a lot of people realized that the tips were transferrable and would make their teaching better overall.
I have also learned how easy it is to get tired and feel unsupported when you know how to do mutual aid but a lot of people around you are still operating in a mode of expecting an institution to step in and give us what we need. I had to learn to set a lot of boundaries around my time and energy when (primarily nondisabled) people were learning about what it felt like to be left behind when your life is endangered.
I learned (again and again) that economic calculations and justifications can basically cancel out concern for life, can destroy the impetus for care, that there are some people who need to root into activities that harm others for their own well-being despite the cost–and that this is people I interact with on the daily and somehow I am expected to be okay with that.
I learned (again and again) to save my energy for those who could meet me in practicing agreed-upon and consensual forms of care.
Sami: I’ve learned that making on the ground organizing more accessible is possible and can become the norm if new generations of organizers continue to learn the multiple reasons why we, for example, tell people in advance how far we’ll be marching or have food and water at events. On a more personal level, I have learned to calculate risk on my own and within the community. I’ve learned to be alone a lot more, in public a lot less, but still feel connected to my people. I’ve learned that pleasure & joy are essential to my mental health and that embracing those things publicly has a positive impact on the world.
What kinds of organizing are you doing right now?
Tasha: I’m not really an organizer per se. So as far as movement I’m just doing my community-building, education, culture work thang, and trying to survive by educating organizations on DJ and mad liberation principles. Also trying to do grief work individually and organizationally where I can.
Bri: My avenue of organizing is through podcasting and through my show but I have been on hiatus since 2021. I’m planning to release a new season in a few months starting in Disability Pride Month. I’ve been collecting interviews showcasing our amazing Black trans disabled community members and searching for a way to fund the podcast. We’ve been talking all about survival and self-hood, all of which have been courageous conversations in resistance and resilience.
Sami: Right now all I’m doing is my book tour really, but that work involves a lot of talking about accessibility and disability identity on college campuses and has meant connecting with a lot of young Black disabled people who are coming into disability identity and trying to help their loved ones do the same.
Aimi: COVID harm reduction: organizing COVID-safe gatherings, promoting masking and testing, creating mask and rapid test redistribution networks
Disability arts organizing: working with the Remote Access collective that came out of Critical Design Lab to continue to host disability nightlife parties at a distance.
Supporting efforts against anti-trans legislation in my state. Creating opportunities for trans togetherness and community whenever possible.
Taking care of my people as much as possible. Letting myself receive care as much as possible.
Where are you at, emotionally, politically, spiritually, right now?
Sami: Tired. Ready to burn it all down sometimes, but also really heartened by what I see among young adults in terms of their political direction & identity development. I’m hopeful despite everything because I don’t know how to keep going if I don’t believe change is possible. And I can’t be a good auntie, love on my niblings genuinely if I’m not still trying to leave them a better, safer, freer world.
Tasha: Fucking exhausted, depleted, etc. But, we continue on.
Bri: Although POWER NOT PITY has been on hiatus, I have been going through a process of self-actualization. I have been chronicling my journey to top surgery and beyond on social media. I finally got top surgery two weeks ago on 03/30/2023 in my Jesus year of all years (that’s year 33 and no I didn’t plan it intentionally hehe). I’m currently healing and I’ve been doing the work that it takes to come home to my body. I’m also growing more into my identity as a griot. I was just chosen to be a part of this new community that Prentis Hemphill forged in the name of uplifting Black trans embodiment. I’m hoping it will be an intergenerational space where I’ll learn from other griots and storytellers.
Aimi: In November, I woke up from surgery to find out that my father had had a heart attack and was in the ICU. He experienced a great deal of medical ableism and racism, and he died in that hospital. My communities here in Tennessee and all over the country are under attack. There was a school shooting last week. The horrors pile on.
And at the same time, there is so much beauty and tenacity around me. People are showing up, following through, pooling resources, making art, strategizing, refusing to leave each other behind. Even though the bottom is very deep, there’s a swell of energy up top and I try to remind myself of that. There is both this chaotic violence and intense beauty all at once. It feels like it shouldn’t be true, but there it is.
Emotionally, I am learning about all of the possible registers of grief — personal, familial, embodied, political, economic — and how taken together they feel very different than I would have expected. I see these devastating horrors but I also see the tulips blooming and that gives me a reason to keep fighting. I am trying to take to heart Mariame Kaba’s advice that “hope is a discipline,” and practice it as much as possible and see where it takes me.
I am also noticing in myself the autopilot parts–when shit gets bad, somehow I know what to do because I grew up in conditions that were not that different from this, and I’m surrounded by people who are also survivors like me. So even if I’m dissociating, I know how to plan a potluck, set up a group chat, let people know when I have extras to share.
What questions and challenges are you sitting with?
Sami: How do we prepare for the impact of climate change on disabled people? What do we do in the face of mass legislative attacks when the GOP has so much control in some places that they can change the rules to keep us from even being able to do anything, like expelling Democrats from the TN legislature? What is the role of identity development, arts & culture in the face of these massive systemic issues?
Bri: As more laws are being passed against my community and more trans people are facing violence across this country, I wonder what will be the cosmic consequence of right-wing anti-trans hatred?
Tasha: Questions, I think I mentioned some above. Always, always, like how do we get to the new world when so many people want to drag us back. (And how can we jettison those muthafuckas because I’m not the one to think everyone is gonna make it to the promised land.) Why revolution gotta take so long? Why am I alive in this moment, what am I here to do, what is my contribution? And how am I going to pay my bills with minimal exploitation? Stuff like that. Challenges, answering those questions. Getting enough rest. Getting my creative stuff done, ever. Practicing hope.
Aimi: Who can we trust to create political strategies that will not harm us, or be too moderate, or serve corporate interests that consider our lives expendable? What does it mean to even engage in political strategy when democracy is so dysfunctional?
As someone who tries to disinvest from putting my hope and resources into the state, I wonder how to be strategic without abdicating the political sphere to those who are willing to put everyone’s lives at risk. I don’t pretend to think that elected officials in my state or city care about my life, but some of them make it clear that they really, really, really, do not want me or people like me here. If I am unwilling to engage in their tactics, what choices and possibilities are left?
My parents left Iran during the revolution when it became clear that they were going to be harmed and persecuted. Members of my family were disappeared and incarcerated. A big question on my mind is will I (and my community) have to leave Tennessee? My whole life, I have been adamant about staying in the South and fighting, refusing to cede this space. But I worry about two things: 1) getting out before it’s too late, and 2) where I would even go where similar things could never happen. Tennessee seems like an exception but it may just be the tip of the iceberg. I have lived my whole life in states like Tennessee, Texas, Georgia, and Nebraska, where the reality on the ground was pretty much always like what the national landscape felt like under the last presidential administration. I know too well that strategies tried out at the state level trickle up. Rather than leaving, I want all of us to plan now for what we will do if this type of political strategy is taking place everywhere.
Leah Lakshmi Piepzna-Samarasinha (she/they) is a nonbinary femme autistic disabled writer, space creator and disability and transformative justice movement worker of Burgher and Tamil Sri Lankan, Irish and Galician/Roma ascent. They are the author or co-editor of ten books, including The Future Is Disabled: Prophecies, Love Notes and Mourning Songs, Beyond Survival; Strategies and Stories from the Transformative Justice Movement (co-edited with Ejeris Dixon), Tonguebreaker, Care Work: Dreaming Disability Justice, Bodymap, Bridge of Flowers, Dirty River: A Queer Femme of Color Dreaming Her Way Home, Bodymap, and The Revolution Starts At Home (co-edited with Ching-In Chen and Jai Dulani.)
A Lambda Award winner who has been shortlisted for the Publishing Triangle five times, she is the winner of Lambda’s 2020 Jean Cordova Award “honoring a lifetime of work documenting the complexities of queer of color/disabled/femme experience.” They are a 2020-2021 Disability Futures Fellow and a member of the YBCA 105. Since 2009, they have been a lead performer with disability justice performance collective Sins Invalid; since 2020 they have been on the programming committee of the Disability and Intersectionality Summit.
Raised in Worcester/rust belt central Massachusetts and shaped by Toronto/T’karonto and Oakland, they are currently at work building Living Altars/The Stacey Park Milbern Liberation Arts Center, a disabled QTBIPOC writers space and accessible writers retreat for disabled BIPOC creators. They are a haggard porch and couch witch and a very unprofessional adaptive trike rider.
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