death is all around: staying close to death as a disability justice practice

nobody promised you tomorrow

happy day after Mother’s Day, y’all. we made it. thoughts are on the mothers and parents in Gaza and Sudan.

Everyone I know who is a disabled/ disability justice identified writer, creator or maker writes in relationship with death. And there is so damn much death right now.

image of the disability justice grief transformation altar portal at I wanna be with you everywhere 2023, image is of an alter with artwork by Jen White Johnson depicting many disabled ancestor including Engracia Figueroa, bell hooks, Stacey Park Milbern and more above a white lace tablecloth draped altar bedecked with yellow and green candles, flowers, a person in a white button up with green flowers and a backwards black baseball cap is visible looking down at it, a brown skinned Black person sitting in a rollerator wearing a brown jumpsuit and a pink KN84 reaches towards the altar.

A friend once remarked, “Life is long.” I was like, oh, is it? You think it is, really?

This isn’t something we talk about, but. Another friend says, the way I create and make art came out of thinking I was going to die/ not knowing how long I was going to live. My mom, someone who had polio and lived polio, raised me on a refrain of you could die tomorrow, what do you want to do with your life? I was that writing teacher to the teen queer trans and Two Spirit kids at the community center who used that same line to be like, if you died tomorrow, what would you want to write. Max quoted Stacey as saying, people with my disability don’t usually live that long so I’m trying to pack it in while I can. There is no keeping up with a whirlwind. I was suicidal for years and years, didn’t know how long I’d be here. My lifelong suicidal ideation turned around in the womb when T. died by suicide, almost ten years ago now, and I told myself,no matter how bad it gets, you can’t. Still have my SI, but she hits different. I still live marked different than those who have never lived in those waters.

Hard to write about not in the movie of the week way, but, death sharpens our focus.

I don’t mean this in an uncomplicated way. The same friend says, sometimes it makes us supercrips even if we don’t agree with that idea. Supercrips who sprint pull forward from those who can’t super. Break the relationship. When we stop being able to sprint… shit, I can’t sprint like I used to, and I know I’m supposed to be a baby illder/ icon but I also wonder how close I am to being forgotten and irrelevant, if I don’t keep pumping it out. We don’t know how to recognize ourselves when we slow. Slow makes survival less guaranteed.

(Edited to add, read this Alice Wong banger on similar topics.)

My friend and comrade in disability justice, the great Stacey Park Milbern, in our co-authored piece, “Crip Lineages, Crip Futures”, (link is to the free open access reprint in Crip Genealogies, but it also appears in Care Work) writing about a time after a burst of progressive disability had changed her, wrote:

 “Rebirthed me always has new priorities. I let them guide me. This time it’s to live life with my disabled love as much as we can with the time and health we have and to let the Spirit transform me through this experience that I may be of use to my communities and people in a way I wasn’t before. Everything else forms around those things. Pain and loss clarifies, refines. Some times crip life is crystal clear. I know how I want to live in this world. I fight to be here.”

We also need time to play hooky, watch our MCU movies, do the laundry, whatever daily we have. But death makes everything more on purpose. Sharpens the knife.

Last week, I spent a long time procrastinating working on a talk I needed to write, and I got caught up in cleaning my house and reorganizing all my furniture. I came upon a sign I had made back in November. It’s brown cardboard, from a Chewy package, and it reads 150 CHILDREN DEAD AT AL SHIFA HOSPITAL- DO NOT LOOK AWAY.

I did not know when I wrote that sign on November 12, 2023, right after the first attack on Al Shifa that six months later tens of thousands of children and adults would be murdered, missing, newly disabled and forever traumatized by this time. Forever changed.

And that I and all of us would be forever changed. I am not who I was seven months ago. None of us are.

Rebirthed me has new priorities.

What are yours?

normalcy bias

Sitting on the porch, or at my desk, looking out my windows at the dog park in the vacant lot, the mature trees leafing out, the May sunlight, I talk with my friend, he says, a lot of people are getting married right now. I say sure, a lot of people probably want someone to cling to for six months in a nice queer two bedroom before the fascists shoot us and throw our bodies in a hole.

We talk about “normalcy bias”- the statistic that when a crisis happens or a time of war or fascism or unrest, 70-80% of people either don’t recognize that a disaster or crisis is happening, or minimize it. They say everything is fine. Only 10% are able to both recognize crisis and organize and make a plan. The other 10% panic or are susceptible to control, or a demagogue.

There’s a lot of classic examples of this, like:

“In 1977, two planes collided at an airport on the Spanish island of Tenerife. The survivors on Pan Am Flight 736, described the odd scene on the plane after the collision. A small group of passengers realized they were in great danger and immediately sprang into action exiting the plane on the left wing.

A few passengers panicked, but the majority of the passengers acted as if nothing dangerous or abnormal had happened at all. They calmly sat in their seats, even as the plane began to catch fire. These examples demonstrate the same phenomenon that occurred during the Chernobyl disaster. At the moment of crisis, rather than acknowledging the direness of the situation and responding appropriately, the response was to pretend like nothing was happening at all.”

I say, well, I’m not getting married but I am really glad to be part of a crew of people in that 10%, who can build and maintain relationships, organize, share skills, make a plan. Not look away, not check out. Not all of the time.

19 to 19

photo of the Refaat Alareer faculty encampment at the new school, image of a mix of people standing and sitting around a tent with Free Palestine/ Liberated Zone inside a campus building.

I got back at midnight last Saturday night from New York, driving back to southwest Philly where I live now. I came home from going to the encampment/ occupation at the New School for Social Research. My friend is a former lecturer who was doing organizing to support some of the students who had taken over buildings in refusal to continue business as usual as the ongoing genocide in Gaza continues, and to demand that the New School divest from war and imperial genocide profiteering corporations that fund and support that genocide, like Lockheed Martin, Elbit Systems, Caterpillar and Google.

I went to Eugene Lang College of the New School from 1995-1997, when Giulani had just become mayor. Tuition was still $12k, and I graduated debt free because there were a ton of scholarships for BIPOC and first gen and poor students. I was part of the New School student movement/mobilization of 1995-1997 as part of the CUNY Coalition, as well as being a part of the city wide anti police brutality movement that wasn’t even calling itself abolitionist yet. We were fighting against what has now come to pass- neoliberal universities that are cash cows and investments for profiteers and a paramilitary police state in city government. We were fighting for free tuition, Black faculty getting tenure and respect, and colleges and neighborhoods we owned.

image of a Clit Club flyer that just has CLIT CLUB/NYC, the word freedom in times new roman set against a black background, and then “432 w 14th st, every friday. upcoing events 212-517-1769”

 I was also a dissociated feral baby queer who was also spending my time staying up til midnight reading books in the porn and queer sections of Tower Books before it closed. And walking to Clit Club, the underground queer club run by Black and Asian queers in the meatpacking district, in basically my underwear, Docs and a bomber jacket from where I lived at Avenue B for $300, because it was a choice between spending $1.50 on a slice of pizza or a subway token and the pizza usually won out. When I got there, I would lie and said that I’d lost my ID but I was definitely over 21, and they would always let me in. Because I was a 19 year old who looked 25, but also, we look out for each other and they didn’t want me to freeze to death in my underwear.

The march of a naked and dissociated in the street baby brown femme very Crazy very nonbinary with no language very autistic definitely with no language survivor kid. Who was a revolutionary, on that walk, as much as they were when they went to the protest.

heart shaped photo of a Black queer person with a short cropped blonde fade and a choker necklace touching tongues with another Black or brown queer with a tongue piercing and thick lashes, the worlds EVERLASTING PRIDE 1996 over top

Two weeks ago, when the encampments were just beginning, Alexis Pauline Gumbs did an Instagram live oracle where she asked us to come up with a number and a question, and she would answer the question by reading  words from the page number that corresponded to the number, from Caribbean feminist  scholar and author Jacqui Alexanders Pedagogies of Crossing. Her number was 19, and her question was, what does my 19 year old self have to say to the 19 year olds who are mobilizing now?

The mobilization I was a part of as a 19, 20, 21 year old was in part to keep Professor Alexander at the New School, where the administration liked to name her as a star Black Caribbean feminist faculty but refused to give her more than a temporary contract, or health insurance. I left the country before shit really took off in spring 97 with the hunger strike and occupation but I got changed by all that experience of organizing. Fighting, relationship building, stealing copies.

My friend and the students invited to do a teach in as both an alumni writer bitch and person who organized with the earlier mobilization. I didn’t get to give that talk, even though I did get to the encampment and inside it, because the NYPD raided the encampment and arrested everyone at seven in the morning and the administration put the campus on lockdown.  Instead I lay next to my sibling, both of our bodies wracked with pain from vicarious trauma and disability, mine from forever, theirs from long COVID, and from being arrested five times in 2 months with their arms wrenched behind their back. I gave them a CBD massage. We spent a lot of time on Signal threads. We made sure each other ate. We grieved. We talked til late.  All of this is part of the struggle, too, btws.

What I didn’t get a chance to share with the student occupiers:

What does my 19 year old self have to say to the 19 year olds of today?

You don’t always win. Not the way you think. Revolution is anti colonial in its unpredictability. It does not know about clock time.

We didn’t win the things we fought for in 97 at the New School mobilization. Hence, the hyper militarized police, murderous Zionist white men across the street screaming at young people, and the fact that undergraduate tuition is now $56000, or more than I made a year for most of my life. Not $12,000, or free. Jacqui did not get tenure. People hunger struck and burnt the president in effigy and occupied. I graduated with my back to the president holding a  copy of Assata Shakur’s autobiography. And one might say it was all in vain.

But we did win, because the struggle we were in together changed us. Jacqui Alexander continued to published world changing Black Caribbean queer feminist scholarship on her own terms,  moved back to Trinidad to create  and direct the Tobago Centre, a space to study Black Indigenous spirituality. I left the country and academia and moved to Toronto. I was part of co-creating disability justice with many others, including those of you reading this.

My friends and comrades raised kids, created Black queer history tours of Newark, healed. We grew up and stayed alive and stayed in struggle.  We didn’t win what we hoped for on the timeline we hoped for but we were changed. We changed the future anyway.

We changed the past by walking back into it.

The current student movement is completely amazing, hopeful, militant and beautiful, and, it's scarier for student organizers these days. When I was a 19 year old student protestor we “just” had cops and tanks (though we did have NYPD snipers on roofs in ‘95), not completely unhinged Zionists screaming SHOW YOUR FACES and drones taking photos of us for the internet. We also did not have members of the fucking IDF showing up with guns and chemical weapons. We had places to run to. I could pull my landline out of the wall. These times are different because of how the panopticon bulges.

And, we all can have what we had and what they are re-discovering. In a world where capitalism and colonialism has marshalled a hypersurveillance state, a gentrified internet that harvests all our data mining us to sell things and make profit- which once held out the hope of instant connectivity- there is power in being analog. Unseen. Offline. Using online strategically. Being very clear about working the system and stopping when it works us. Passing messages hand to hand, voice to voice. Stickers. Zines. Code words. Stories. Secret languages. Encoded platforms. Poetry.

There is always a place they cannot find. Languages they cannot know. Keep finding and making them.

I did not expect to live to be 25, let alone 40, let alone 50 next year. I figured I’d either be dead by now or the revolution would have happened and sure, there would be plagues and death but I would maybe be happy making the new place in the ruins. The latter turned out to be closer to the truth except the rev in progress and not. I’m alive in the midst of plagues and death, and I’m forever grieving. My witness stays open to more disaster than I thought possible for me to witness, beyond what any of us could endure witnessing, and yet still do. The future including what happens tomorrow is partially gameable, and also not.

And that is disorienting and also, one of the resources we have- that we can’t predict what shows up.

I saw signs inside the occupied University Center that said while you were taking exams, 300 children were found in a mass grave at Al Shifa hospital. and your tuition funds genocide.

Crystal clear. People have been pushed to the brink the last six months, four years, whole lives. They, we have had enough. We are finally saying no.

 Walking with friends from the UPenn encampment’s first night a few week ago, we realize: the students who are organizing these mobilizations have spent their entire university careers during COVID and all the rebellions around it- from the Black lead rebellions after George Floyd  and Breonna Taylor’s May 2020 murders to, both/and, the disabled lead rebellions before and during the COVID that is still here, to all the Palestinian lead resistance now and since.

They, you, we: have some things to lose. And also nothing to lose.

kill switch

A loved one asked me what the vibe was like in New York away from the campuses and I said

“ brooklyn and loesaida on the street there's this feeling of alert waryness, like people know shit is going down and are keeping an eye out, but it's been six months/ four years/ forever and they have to go to work. in the more bourgeois neighborhoods it's worse  because it's the disassociation. It’s  like what it felt like when I travelled to nyc in summer 2021,  first trip after the first vaccines, and you could just feel how thick the ghosts were in the city but everyone was checked out, like, what dead people.

this is like that, like one minute you'll be at an occupation and it's wild energy, zios this close to shooting the kids and the nypd would let the, but you turn a corner and it's amnesia, what protest, we're going out to dinner. business as usual but more extreme hyperdissasociative. It’s mirroring a lot of how nyc always feels. the hypercapital hyperdissasociative, but also way different than how it felt in 2020 or 2015 where the streets were just ready to brawl with the cops....  It’s like more people have the kill switch turned off”

The trick is to keep going and not have your kill switch turned off when there’s so much death all around. 

I study disassociation as someone who has lived inside it and surrounded by it as a survivor all my life. its uses, both as survival tool when used by us and tool weaponized to control us.

death is complicated part 2

The death pushing us harder thing isn’t always great in its results and we don’t know how to talk about it. It’s a secret ingredient. The first friend I mentioned, in the convo that opens this post, also remarked, some of us are supercrips, even if we don’t want to be. And we get rewarded for it by capital, because it helps us produce and organize and make things. Shit people clap for and pay for.

Disability is so associated with death by the system world, we fight hard to insist, no, we are about life, we have joy. We don’t know how to talk about how some of us have progressive disabilities and may indeed die young and not be here forever, and some of us may live on after they go. And how that affects our relationships, our future planning, our work and love. We don’t know how to talk about the fact that some of us may not be here even if the rev happened tomorrow.

I don’t know how to walk towards my own and others disabled death with senses open, planning for it in a way that does not accept my and our inevitable slaughter.

sometimes I contemplate that with an 8th house venus in gemini I should embrace that I could be one hell of a sex and death doula, combined. it’s not always that but sometimes it is. touch knows and transforms. there’s that big hole in the sky and the top of my head that reaches down to my hand. some days friends joke that noone hits on each other anymore, this feels both like the AIDS 90s and not, in how we want touch in the face of mass death, risk everything to go for it and also don’t know how to reach for the kind of touch we want. the ancestors circle, reach down to stroke. perhaps they could guide us if invoke, in sex, life, the forward.

a poem I wrote on this topic a few years ago (originally published in Room Magazine’s Ancestors issue)

End of the world park or, why queer disabled people of color die young
 
 
It's not always murder, ableism or homeless. Sometimes maybe you look at the available options and go, fine. It's not always tragedy. Who lives long and well, anyway. Me and S. hanging out, her buffalo plaid jacket and hat,  southern crip organizer, bourbon cocktails poured from a coffee urn at this cajun restaurant that's the closet wheelchair accessible place to ashby bart, we talk about all the bitter, bitter beloveds. Say, are we going to be like them? Change the topic, go, what can we do to not be like them? Still don't have an answer, settle on, I promise if we start acting like that, I'll tell you. Follow with, I promise if I am about to die, I'll tell you. (You didn't get the chance, didn't want me to run, thought it wasn't going to happen, wanted to focus on your life. I'm making up stories. I don't really know why.) A. nods and laughs at her kitchen table, says, oh yeah, older women of color, it's like I built/ I am this bridge called my back, bitch! Fuck you for telling me you built another bridge after it, fuck you for telling me that maybe that bridge that get us here needs a retrofit or a paint job or an accountability process!
 
Here I am on my fourth life, looking at nine more? 11K in IRA, successful book but people don't give any kind of cripple money, sometimes even your own.  Sometimes especially your own. We didn't expect any of this: our survival, our lives, the movement twists and turns, the ways we continue to be deliberately forgotten.  We're so used to being the only one and right. I still don't want to die young. I still want us all to make it to that bigass place over that hill. I want a mixtape, a rock anthem, a love song, a scream     I want none of us to ever end.

find me mostly offline this month, on an away mission and writing working gardening at home but:

May 30, Crip/ Disability Doulahood workshop online, Lifewerq!

June 1: in person masked event in Philly at Making Worlds, launch of Noam Klein’s The Land Is Holy.

June 3, Disability Intimacy Boston launch (rescheduled)

more tba.

Graphic with a pale pink background with a slice of watermelon on top. Text reads “Crips for eSims for Gaza Update 5/1/24, 517k CAD raised ($377k US) 6420 eSims purchased and sent, 2050 eSims activated” On the lower left corner, “Thank you! Jane, Leah, and Alice.” On the lower right corner is a QR code

(this is from a couple weeks ago, we are now at $544,078 CAD)

Crips for e Sims for Gaza is still rolling. We hit half a mil Canadian a few weeks ago. If you have USD, donating via the Paypal link on the Chuffed is a good move right now. I know right now all witness is on Rafah and there are a million fundraisers to help people get the hell out. There’s still a need for lifesaving communications as people face off and on total comms blackouts. Thanks for everyone who has kept this train going for five and a half months.

And PS: turns out I don’t have cancer. thanks for all the good thoughts, prayers and luck.

til next time, as times change, contemplate your changed, your priorities, your weapons, your desires.

Love,

Leah