This story is the tenth in Truthout’s “Visions of 2018” series, in which activist leaders answer the question: “What would you like to see created, built, imagined or begun this year?” Each piece will focus on a bold idea for transformation, to give us fuel as the year moves forward.
Sick and disabled and neurodivergent folks aren’t supposed to dream, especially if we are queer and Black or Brown — we’re just supposed to be grateful the “normals” let us live. But I am the product of some wild disabled Black and Brown queer revolutionary dreaming, and I am dedicated to dreaming more sick and disabled queer Brown femme dreams in 2018.
It’s been 13 years since the original Disability Justice Collective — made up of activists Patty Berne, Leroy Moore, Mia Mingus, Sebastian Margaret and Eli Clare, a group of queer Black and Asian, queer and trans white disabled people — came together to coin the term “disability justice” and lay the groundwork for a movement-building framework of intersectional, revolutionary disability politics. Sick of single-issue, casually racist white-dominated disability rights movements on the one hand, and of non-disabled Black and Brown movements forever “forgetting” about disability on the other, they decided to create some kind of luscious, juicy movement that would be like what environmental justice was to environmental rights, but in a disability context. This work has been carried on by organizations like Sins Invalid and the Harriet Tubman Collective, and many individuals and unnamed collectives doing visible and also highly invisibilized work.
Disability justice, when it’s really happening, is too messy and wild to really fit into traditional movement and nonprofit-industrial complex structures.
And right now, we’re at an interesting moment in the history of disability justice. It’s a moment in which many social justice activists slap “disability justice” on their manifestos or add “ableism” to the list of stuff they’re against. But then nothing else changes: All their organizing is still run the exact same inaccessible way, with the 10-mile-long marches, workshops that urge people to “get out of their seats and move!” and lack of inclusion of any disabled issues or organizing strategies in the work. Many abled Black and Brown activists I know and am comrades with remain ignorant of the fact that sick and disabled Black and Brown people are doing critical organizing and cultural work on issues from protesting the police murders of Black and Brown disabled people to not being killed off by eugenics, killer cops and medical neglect. Many remain ignorant of how we are organizing against getting locked up in back rooms or institutions, and how we are fighting the end of the Affordable Care Act, Medicaid and the Americans with Disabilities Act. And, no matter how much shit I post on Instagram about it, many remain ignorant of the fact that we have histories and cultures and skills and visions. And that if we’re going to survive the Trumpocalypse and make the new world emerge, our work needs to be cripped the fuck out. Our work needs to center disability justice and the activists at the heart of it who have reclaimed “crip” or “krip” as a positive identity, where being sick, disabled, mad, neurodivergent/Autistic and/or Deaf is at the heart of our radicalism.
The Crip Art of Failure
Recently, on a conference call, a totally well-meaning able-bodied person asked me: “We just have one question! Uh … What is disability justice? Like, how do we do it?”
I was polite as hell, but in my head, I shook my head, laughed and thought: You want to know how you’ll know if you’re doing disability justice? You’ll know you’re doing it because people will show up late, someone will vomit, someone will have a panic attack and nothing will happen on time because the ramp is broken on the supposedly “accessible” building. You won’t meet your “benchmarks,” on time or ever.
Disability justice means people with disabilities taking leadership positions, and everything that means when we show up as our whole selves, including thrown-out backs or broken wheelchairs making every day a work-from-home day, having a panic attack at the rally, or needing to empty an ostomy bag in the middle of a meeting. It means things moving slowly and being led by people even the most social-justice-minded abled folks stare at. And what holds many social justice abled folks back from really going there is that our work may look like what many abled people have been taught to think of as “failure.”
It’s so easy to look at a list of disability justice principles and nod your head. But the real deal is messy and beautiful — as messy and beautiful and real as our sick, disabled, Deaf and crazy body/minds. Disability justice, when it’s really happening, is too messy and wild to really fit into traditional movement and nonprofit-industrial complex structures, because our bodies and minds have always been too wild to fit in those structures. And that is on purpose: Nonprofits, created in the ’60s to manage dissent, have much overlap with “charities” — the network of institutions designed to institutionalize and control disabled people. Changing work to really embody disability justice means throwing out most ways people have learned how to organize.
Disability Is a Set of Innovative, Virtuosic Skills
It’s one of the biggest paradigm shifts to get abled people to understand disability not as an individual tragedy, health problem or fate worse than death, but as communities of people who have brilliance, histories, cultures and skills. When abled people fuss about how it’s “so impossible” to make access happen, I laugh and think about the time the ramp on the van that three wheelchair-using performers were travelling in to our eight-hour rehearsal broke, trapping people inside. All of us brainstormed for two hours — Maybe if we pull another van up and lower their ramp on the busted ramp, folks can get out? Who has plywood? If we go to the bike shop, will they have welding tools? — until we figured out a way they could get out.
No one likes to be included as a favor. Inclusion without power or leadership is tokenism.
The brilliance of disability comes from this innovation and commitment to not leaving each other behind. It includes the power of a march moving as slow as the slowest members, who are at the front. It includes the power of a lockdown of scooter users blocking police headquarters with huge pieces of adaptive equipment. It takes the shape of movements that know how to bring each other food and medicine and see that care work as not a sideline to “the real work” of activism, but the real work of activism, all while building cultures where we don’t shame each other for being sick or having needs. It means knowing how to organize while sick, from the bed and from the access van lineup. All of these are crucial disabled skills. I am for us loving and being for ourselves as disabled people — particularly as sick and disabled Black and Brown people first — but I also want abled people to learn that we know shit that can and will save your life. Because it saves ours, daily.
Disability Justice Is About Building Relationships
Over the past decade, I’ve seen many a well-meaning abled person read an access checklist and do all the right things — get an accessible space, book an ASL interpreter and ask people to be fragrance free — and then be surprised and miffed when disabled, Deaf, sick and mad folks don’t show up en masse.
It shouldn’t be so hard to figure out why this is: Often, the abled people in question don’t know any actual disabled folks. Ableism and audism structurally separates disabled and Deaf people from abled and hearing folks. It’s hard to build relationships when the bar where you are used to hanging out has a flight of stairs or when you don’t know the language of the person you’re trying to talk to.
When people get ASL interpreters and ramps and fragrance-free lotion but haven’t built relationships with any disabled people, it just comes off like the charity model once again — Look at what we’re doing for you people! Aren’t you grateful? No one likes to be included as a favor. Inclusion without power or leadership is tokenism.
When I see disability justice flourishing, it comes from years of relationship building, building trust, learning from mistakes and showing up for each other. In Toronto, hearing disabled people and Deaf people built with each other for years, including creating community-controlled queer ASL classes so hearing disabled people could learn to communicate with Deaf and hard of hearing folks, so we could have the tools and cultural fluency to communicate. This kind of active solidarity is love in action, and also creates the rock-bottom tools we need to talk, laugh, hang out, disagree, organize, break isolation and fall in love. And it’s the opposite of a well-meaning but relationship-less, access provision.
Abled People: Time’s Up. Especially Because You Will Become Us, Eventually
It would be easy for me to write the same article that disabled folks have written to the abled since time immemorial — one asking you to get it the fuck together and stop “forgetting” about access and disabled demands. It would be easy to write because it’s still so needed: Nondisabled activists continue to “forget” about basic access until someone disabled bugs them about it. Or they remember for a few months following a workshop, and then the commitment fades.
This forgetting breaks my heart every time, and it also frustrates the hell out me. If movements got it together about ableism, there is so much we could win. We could win movement spaces where elders, parents and sick and disabled folks could be present — vastly increasing the number of people who can be included in “the revolution.” We could create movement spaces where people don’t “age out” of being able to be involved after turning 40 or feel ashamed of admitting any disability, mental health or chronic illness. We could create visions of revolutionary futures that don’t replicate eugenics — where disabled people exist and are thriving. We could win a unified analysis bringing together prison abolitionist and anti-institutionalization organizing, recognizing that at least 50 percent of Black and Brown people murdered by police are also disabled, Deaf or autistic/Mad. (This is not new analysis on my part — Black disabled organizations like Krip Hop Nation and The Harriet Tubman Collective have been organizing for years around these issues.)
So, I will say it one time: I want abled people to get it together in 2018. Stop forgetting about disability. Face your own terror of being disabled, sick or mad. Unpack the stories of disabled people in your families and communities. Listen to those people. Read some of the many brilliant, made-by-disabled people access guides out there. Normalize access and disability. Be resourceful, like this article that has a million hacks to make bathroom access happen. Ask how you’re fighting ableism in every campaign you do. Don’t forget about us. Realize you are or will be us.
Wild Disability Justice Dreams and Unpacking Shame
Sometimes when disabled Black and Brown people bring up access needs, I see able-bodied comrades’ faces turn stony and shut down. This often doesn’t come solely from a casual hatred of disabled people, though that’s there too. But in many Black, Indigenous and/or people of color communities, in my experience, someone who’s angry and defensive about an inaccessible space is sometimes also flashing back to a memory of an uncle’s polio or schizophrenia that no one would talk about, or a memory of medical experimentation or lack of access to basic needs. The only survival story that many Black and Brown communities have had is to deny our needs and work 16 hours a day, “keeping up.” Many of us were taught from a young age that care, softness and healing were for other people, and we needed to just suck it up and make it work. Many of us hold stories about how our families survived enslavement, colonization and other forms of violence’s grueling physical labor by not being disabled. Disabled people in those stories didn’t make it — they got killed. We sit in legacies of scarcity, survival and deep, unpacked grief.
I am dreaming not just of a revolutionary movement in which we are not abandoned, but of a movement in which we lead the way.
I’ve also been a part of many non-disabled people of color organizations in which having no money was the norm and was something we prided ourselves on knowing how to make work and look gorgeous. We could make a 24-city action happen on a quarter-tank of gas and no sleep. We didn’t have money to pay ourselves for hundreds of hours of work; every space said “no” to us, so we made do with the one queer bar or community center space we had. And when someone pointed out that the space was up a flight of stairs, or asked if there was ASL interpretation or wanted some kind of fragrance-free product, we often met them with a mix of bitterness and rage: We’re not even paying ourselves and you want what??? My grandmother worked in the fields all her life; she never had an “access need.”
I honor the survival skills of denying need and getting by on nothing that have helped keep us alive. But I also deeply believe our beloved dead want us to do more than live on one cracker and an inaccessible building. We have other lineages of sick and disabled Black and Brown ancestors. Before colonization, enslavement and disaster, we had cultures where disability was a normal part of human existence and disabled people were honored and valued. I want us to honor those lineages and ancestors and bring them into the present. As Black disabled queer writer and organizer Cyree Jarelle Johnson remarked to me, “Harriet Tubman had seizures and narcolepsy because a slave owner threw a weight at her head. While on trips she likely had to sit down, lay down, move slow and rest. Her comrades didn’t abandon her then, and we can figure out how not to abandon each other now.”
We have ancestral shame to heal. And that’s not easy. But I believe a key part of our work is about honoring, remembering, claiming and learning from our disabled queer Black and Brown ancestors, and unpacking shame and silence in our own lives so we can become those ancestors.
Let’s Live Long, Beautiful, Cripped-Out Lives
I know more than one genius organizer — usually a Black or Brown sick or disabled woman or nonbinary person who doesn’t have a ton of disability community — who’s casually told me that they’ll be dead by 50. I respect that some disabilities are progressive and might result in shortened lives, and that we’re up against everything from insurance denials to police who are trying to kill us who want to do the same damn thing. But as I hear my friends talking about how they’re sure they’ll die young, I wonder if actually building care collectives — communities where caring for each other is something we actually practice and build the structures to hold — might change what feels possible. I think of my friend Loree Erickson, a queer disabled Toronto-based activist who built a mutual aid care collective made up of a bunch of friends who have been doing her personal care tasks for over 18 years. Her collective is a place where so many people get brought into disabled community; it is also deeply joyful, sexy and fun in a way that many people don’t think of when they think of care. I think of the disability networks I’m in where friends bring each other soup and share meds. In these networks, we reward each other not just for being supercrips working at breakneck speeds; we also reward each other for existing in the incredibly vulnerable times when just living is enough.
Recently, my comrade Stacey Milbern brought up the concept of “crip doulas” — other disabled people who help bring a person into disability community or into a new kind of disability than you may have experienced before, a more seasoned disabled person who teaches the hacks you might need, holds space for your feelings and shares the community’s stories. It’s telling that there’s not even a word for this in mainstream English. How would it change people’s experiences of disability and their fear of becoming disabled if this were a word and a way of being? What if this were a form of emotional labor that more folks knew of? I have done this with hundreds of people. What if this is something we could all do for each other? How would our movements change?
Cripping the Apocalypse: We’ve Already Survived the End of the World
2017 felt apocalyptic. One place I felt the apocalypse was in the wildfires that covered the Pacific Northwest. I live in South Seattle, and one morning last August, I went outside and the air was dark grey. Something grey was sprinkling from the sky. Was it … ash?
At first the people on the news were optimistic. It should be over in a day. Then a week. Then maybe next week we’d have breathable air. The news reports trickled in: Fueled by climate change, giant wildfires in British Columbia had spread to cover most of Washington State. Fires started in the Columbia River basin near Portland. Then fires came to Santa Rosa and Southern California. Everyone was coughing and stressed out. I cancelled a planned writing retreat in Northern California because I was scared of driving through fires circling the highway.
Anxiety started to spread: Hey, is anyone else feeling like they can’t breathe, like they’re sick from all the smoke? Am I making a big deal out of nothing, or is the smoke making me feel super foggy?
In this moment, it was sick and disabled folks who already knew about masks, detox herbs and air purifiers. Over and over, it was sick and disabled folks — particularly folks with environmental illness, asthma and other autoimmune conditions, who’d been navigating unsafe air for years — who shared our crip survival knowledge and skills for coping with anxiety. We had comprehensive information about where to get masks and respirators and about the right herbs to take to detox after exposure to air pollutants. We knew to go to libraries and other air-conditioned places to get an air break. We knew about HEPA air filters and how you can make one with a furnace filter and a box fan. We knew it was normal to be feeling fatigue, confusion and panic, and we knew to hit inhalers and take anti-anxiety herbs. Lightening Bolt, a disability justice activist group formed in the wake of Trump to do community-based trainings around access and community safety without the police, led a successful “Masks to the People” campaign, crowdfunding money to buy masks that they distributed to people living in tent cities in the Bay Area, since people living outside walls are extremely vulnerable to toxic smoke.
Since Trump got elected, many people in my community have been talking about how Octavia Butler was a prophet and how her books Parable of the Sower and Parable of the Talents eerily predicted the climate change, wildfires and fascism of our current world. Many people in movement spaces have taken Butler’s words as prophecy.
What I’ve not often seen discussed is how Lauren Olamina, Butler’s Black, genderqueer teenage hero who leads her community out of the ashes and founds a new spirituality that embraces change as god, is disabled. In the book, she is called a “Sharer”: someone with hyperempathy syndrome. She feels everything everyone feels, and it’s often overwhelming in a way that reminds me of some autistic and neurodiverse realities.
To me, Butler’s Parable books are a Black disability justice narrative. Lauren often struggles with her non-normative mind, but it also gives her Black disabled brilliance. Her hyperempathy makes her refuse to leave anyone behind. It allows her to innovate, co-creating a resistance community and rebuilding it when it is destroyed.
For years awaiting this apocalypse, I have worried that as sick and disabled people, we will be the ones abandoned when our cities flood. But I am dreaming the biggest disabled dream of my life — dreaming not just of a revolutionary movement in which we are not abandoned, but of a movement in which we lead the way. With all of our crazy, adaptive-deviced, loving kinship and commitment to each other, we will leave no one behind as we roll, limp, stim, sign and create the decolonial living future.
I am dreaming like my life depends on it. Because it does. And so does yours.