disability justice is gore and shit and bile

this is a movement made by perverts, please don't forget it. also: money changes everything.

a mercury retrograde interstitial eclipse genocide month six mood between two friends

(ID: Screenshot of a Signal thread convo that reads: “I want to buy a cordless drill and drill through the skull of everyone annoying me” “Girl I want to drill through my OWN skull” (red heart emoji) “My homegirl was like what do u need in this moment and I was like smash me with a sledgehammer lol” ”I would also drill through my own skull”)

what happens when we’re no longer the hot ticket/ flavor of the month: sometimes it’s steady work in the dark.

hi friends and relations,

I started writing this a few weeks ago now. now it’s two weeks post equinox and this is coming to you knee deep in the portal between the closing and opening eclipses. I have a petition on my altar that is 3/4s done, waiting for the os to open. maybe you have something like that on the altar of your offering, too. good luck. hope you get to shed what you need to shed and get what you need to get.

this is a quick one (famous last always words) with some things I’ve been thinking and some teasers because yes, I have two books in the works.

money changes everything

I’m working on my second memoir and I’m making steady progress. Yes it’s sort of a sequal to Dirty River and it’s also it’s own thing. This is a weird spring for me because, due to Zionist backlash and also that disability justice is no longer always the hot ticket item it was for a minute, I got fewer spring college speaking gig requests than I’ve gotten in the past 15 years. college gigs, especially during April (because it’s always “Asian/Pacific Month meets Sexual Assault Awareness Month meets Poetry Month” FML) have been one way I’ve made money since 2004, the frequency of gig offers has gone up and down with recessions and cultural moments, but the emptiness of my inbox this spring still took me aback.

People keep doing those “four years ago lockdown had just started” memory posts; one thing I’m remembering was how disability justice was the hot ticket for a second. from 2020-2023 I had so many gig offers I couldn’t say yes to them all if I tried. It was Disabled Working Month all the time. ( I would say “I’ve never worked that hard in my life” but of course I worked harder when I was landscaping, housecleaning, being an abortion worker and a frontline crisis worker, doing manual labor, telemarketing etc.) People really threw money for a hot second at (some) disabled and abolitionist people in the heady days of 2020-22. Many people of course did not get any money thrown. It really felt like the Carter era in a weird way- “radical chic” and a pumped up economy plus movements being a momentary flavor meaning that many spaces were public about how the amount of donations they got was great and also something they weren’t set up to accept (I’m thinking of Black and anti-police terror groups in Minneapolis after George Floyd’s murder who were like, we actually need you pause donations, we don’t have the infrastructure for this.)

This is by far not the first time that pattern has happened, many movements have a moment where “1998 is the year of women in rock” or whatever and then it’s done and you have to figure what if any impact it had. and you get to just keep trudging forward with the work. I’m thinking about how Poets.org asked me to curate a Poetry and Disability folio in 2022 and made disability justice their year theme for events, and it was cool and all but I also had to ask them to ensure that everyone doing an event made it accessible and pointed out that they don’t have “disability” as a keyword in their database (the closest they had was “ the body”) and ask them to change it. As of today they still haven’t. A theme is easy. Systemic change not so much.

We all know money both supports and destabilizes the fuck out of movements and communities. One thing I believe in is going to get the money and a hustler ethos about extracting capital from places that have it, when/while we can. And, the worm has turned. There’s a lot less money being thrown now. I kind of figured it would and I’m glad I saved.

One of things I appreciated in The Revolution will Not Be Funded (the book linked above) that’s less often cited than their right-on analysis of how funders coopt and defang movements, is that, yes, and, a lot of the people who took nonprofit jobs in the 80s weren’t doing it out of being naive, clueless sell-outs.

They were mostly women or not cis men, mostly Black and brown, raised or currently working class or poor, a lot of them parents and caregivers. They were people who had lived through a lot of wild shit in radical movements in the 60s and 70s- people getting killed, going to jail, disappearing, people losing their minds in intense ways, COINTELPRO, rioting in the streets for years, co-parents fucking off and leaving them with the kids, people joining cults or going to business school- and they really needed a job with a steady paycheck that might cover childcare and have health insurance.

They were people who didn’t have a rich partner or parents footing the bill of their activism. Cough. Many of us are in very similar spots today.

It’s a lot to ballance. We need to survive. We want to do shit that costs money, including having the gift of time. We also need to not get used to the sugar tit of people with money saying they like us and we’re special. Or expecting that those Patr(e)ons will keep paying our way and not snatch their pocketbook back when they get bored, or we get too wild.

I’ve been reading the intro to this book, telling this history of Women With A Vision, a Black feminist sex worker/ harm reduction feminist collective based out of New Orleans, and somewhere in there someone said, “best to remember how to fight to survive the ways we always have.” Truth.

In any case, I have enough to pay my bills ,and less public facing workapalooza is giving me time to work on the memoir #2. It’s wild to have some steady chunks of time every week to work on a long nonfiction project, not, as I have done with almost every other nonfiction book, produce it by hyperfocusing and staying up til 4 am in week or two chunks when I stole a break from working the five jobs. COULD THIS BE SUSTAINABILITY/ one of the principles of disability justice? snort.

but I haven’t historically been able to access “work on the book a little bit at a time every day.” I’ve had “better weaponize that hyperfocus to GO DEEP on the week off you scraped and stole to go away and work” as an option. that’s how dirty river was written. that plus cash poverty is why it took so long. it’s really different to even have 2 days a week with chunks of time earmarked (a lot of the time) to write, get into a steady flow, revise, come back. shout outs to the six month memoir workshop at ariel gore’s literary kitchen for the container helping me stay on track.

I’m also finalizing my next book of poetry, the first one since Tonguebreaker came out in 2019, the way disabled people love each other. see below for some tastes. this has been a long time coming, as I wrote honor songs odes and laments through the pandemic and many deaths and growths and just kept writing more and more shit. I may also publish a short take of poems I’ve been writing through the genocide in Gaza, as a fundraiser. we’ll see. my intention is for TWDPLEO to be out by fall 2025.

Do see below for a few upcoming public facing chances to catch me, anyways, cuz the girl can’t help it.

other news

Crips for e Sims for Gaza is about to have raised half a million dollars canadian. we hit month three last week. the genocide is hitting month sixth in three days. I can’t even anymore. everything feels half between my prepper organizer instincts of plan to survive, and, jesus take the wheel. I just keep showing up and trying to submit to the fact that I control nothing but as a witch I bend reality and petition where I can. the courage to change the things I can and all that.

Alongside everything I said about cash scarcity above, Living Altars got a little bit of money from Borealis Foundation’s Disability Inclusion Rapid Response fund. Watch this space for upcoming events, the disabled artist “how the fuck did you do it” oral life history podcast I’ve been itching to do for a few years, and more.

crip junior elderhood

I’m turning 49 on April 21. I’m in the ‘didn’t expect to live past 25” club. 40 was also a huge surprise that brought, what the fuck does this look like? Almost 50 (even if forever 38 in looks) is something else entirely.

This past month has brought a lot of conversations with friends and comrades about disabled elderhood. How we mostly don’t get to have it, but some of us are accessing it because of the collective struggle. We don’t get a chance to learn how to elder well because most of us have our lives cut short or life and survival pushes us into retreat from the world. Elderhood is not automatic and there’s a lot of ways to get older and be a total asshole, not an elder. There’s a lot of opportunities for us to become bitter lashing out assholes out of a space of feeling like our work has been neglected, forgotten and underappreciated, that the kids these days just don’t get it or they’re doing it differently than we did partially because of the space we created. We need elder school, or elder circles where we can teach each other to elder well, or just listen to the shit that we’re sorting through (which is probably the same thing.)

A lot of people have been doing birthday fundraisers for Crips for e Sims. Joining in the fracas, if you have it and feel so inclined, you can donate to Crips for e Sims for my birthday and/or send money to Living Altars either through Venmo @Leah-PS if you don’t need a tax receipt or via Autistic Women and Nonbinary Network, our fiscal sponsor, if you do (they will take a cut, mark donation as “for Living Altars” if you send it to them.

and now for our unregularly scheduled program, the writing:

disability justice is gore and shit and bile/ care is edge play

(a little subtweet for post equinox and between the eclipses)

(tw/ cw I guess for mention of blood, guts, shit and viscerality.)

One of my worries as DJ keeps marching on is that we'll lose the shit and the vomit. There's so much pressure to sanitize and de gore-ify and kink-ify disability and DJ, when really it was founded by (mostly) a bunch of perverts. and the lived experience of disability is perverse. you have to use your edge play skills to do any of this shit.

Like literally I'm in a fracking cancer scare right now because oceans of blood started coming out of me a month ago and a few weeks into it the gyno ("Dr Goins", you can't make this shit up) was like uh there were endo cells on your pap in 2021 why was there no follow up and I was like DUNNO. that particular finding (the endometrial cells on the pap) is also within the realm of "ok" as I had no symptoms of concern then, but yeah it's like oops we forgot to read the medical records~! potential big c. potentially hopefully not but still the fear of, are you going to be another person who grew up the child of a cancer cluster who dies in their 50s of toxins, a gendered and classed disease and a missed test result? (ps: I’m ok right now. I’ll have my results in a week or two. I accept prayers and good thoughts. I’ll keep you posted. It feels a little weird to share this in this semi-large a setting but it’s also some of the current disabled reality of my life, shared with many others navigating getting weird lab results back.)

and ne ways, potential cancer pussy uterus blood ocean is literally metal. trash cans full of soaked pads are metal. Care negotiations at this point in my life are edge play, bc new city/ relationship that ended in abuse in 2021 had been v crip4crip shared care for days which was great until it was not, until interdep went codep and got weaponized within abuse dynamics. so I'm much more cautious about any new care asks now with newer friends and lovers than I used to be. I am the bitch who wrote the (a) damn book on care, and yet I am slow to ask. I know the risk. I flash my cards and put them away. Pause before I lay them on any table. My care asks are much more cautious creep. Mostly I lie on the couch digesting the lessons of 2019-2022 like a motherfucker.

In the midst of all this moment, I want to say yes to the heat, shit, blood, kink and scars and dickcuntother, and not making DJ into a nice little nursery rhyme. Care not a nice easy thing made by infantilized helpful people. Yes to the piss in the face when the catheter falls out and my garbage cans stuffed full of blood. Yes to the medical waste bags lined up by the front door. Yes to all our weird scars and truly weird bodies and minds, staying the freak in the closet and in the woods

Yes also to exactly how walking on knives negotiating care is. As I told a loved one a few weeks ago at the beginning of the bloodbath: care is not soft. it can be cripple easy, like what we were doing right then, walking on the accessible boardwalk, ease about time, ending when neither of us had to talk anymore, pausing when blood punched a fist out of me, sharing a joint on a log tucked away from all the Sunday troopers.

But care negotiation is edge play. now more than ever. When you know just what you risk asking. Just how high or life threateningly low the payoff might be. What’s at stake.

taster’s choice: some work samples from works in progress

intro to the second memoir, tent entitled con stands for conjure

the book of Leah part 2

If the first book is about running away from America and your parents, this book is about coming back.

Or about, you already done come back, but this is what happens in the afterfuture., You been home for a minute. Made a couple homes. Made one you thought was gonna stick. Chin up. Tight teeth. Gritted relaxed. Head straight.  Determined. Home. Safe. 

And then the meteor truth hits and opens it all up and you get to see. Is there a tumor in there. In a hidden organ. Is the whole capace rotten. What’s behind the mask.

You look in the magic mirror into the hall of mirrors.

You turn around and look back, Lot’s non-wife. Are you gonna turn to stone.

The power of the truth is still final.

More than one thing can be true at the same time

Truth is a jazzy affair of improvisation.

Yours is a small warbling ass song of love and fight.

What’s there. What’s real what’s fake. Who says. 

excerpts from the way disabled people love each other

My people
 
 
My people are the fuck ups
the runaways, the ones who waited to tell
til they were over 21
so they couldn't be committed, the ones
whose therapy is backpacks and shoplifting and silence
 
 
The ones who grew as much of their own food in the backyard as they could  
as a survival mechanism         not a fun green hobby
the ones who whisper I will beat you with a pipe
I am feral as fuck
 
 
and even though I am somehow an unexpected sort–of success
I still don't know how to adult or tame:
I'm always this close to walking away into the woods
with everything I own in a ripped-up white plastic bag

Rituals

I thought after the femme suicide years maybe we’d get a break
that the workshops would kick in, and the prayers
but the truth is, we are warriors who are going to lose people in battle
and the battle isn’t stopping anytime soon

and maybe we know our rituals
to send people home,
maybe we forget. maybe nobody taught us
but we stumble, try to remember
how to wash the body,  sit with all we've all gone through,
go be naked in the woods with a cake screaming for hours and days
for those who hit some fetanyl too hard
on accident or on purpose,
those whose hearts finally said stop.

maybe I’m always gonna be that feral girl writing shit in the basement
over and over til I got it right
maybe I was grown, I could walk to the corner store and buy a pack of smokes if I wanted to
or not talk for days
maybe no body taught us
polyamory or saying sorry
maybe nobody taught us so much,

maybe my ritual is driving an hour south the day I couldn't drive 12 hours for your funeral
gave some trans kids on the street five bucks, drove to pick nettles at the pull out spot
my hand on my knife when I saw all the new barbed wire signs and heard you whisper danger.
Then spent all afternoon in bed watching the unseasonable snow fall.
the night before, fistfulls of hail rained down, I swear to fucking god,
taking the cherry tree blossoms I'd taunted east coasters with off the tree,
Some were left. I know this is corny. I know it’s true.
My life, our lives, too much, you would never fucking believe it.

for Emma Deboncoeur

some places you can catch me in public april 2024:

April 10: Temple/Tyler College of Art Critical Dialogue, in conversation with Zoe Zahava Steinberg 5:30- 7 PM

April 14: Lifewerq! workshop #1 as part of Life, Death and Disability with Power and Choice Spring Series: End of Life Planning For the End of the World, 4-5:30 PM PST

April 17: UW Bothell 2-4 pm PST (link will be updated)

April 28: Lifewerq workshop #2, End of Life Planning/ Power of Attorney document co-work jam

April 29: El Tailler OutStanding Life writing workshop for queer and trans elders in Massachusetts (online)

April 30 Disability Intimacy reading online launch event Harvard Bookshop, 6 PM, with Alice Wong, Ellen Samuels and Nicole Lee Schroeder.

Staceyfest

Finally, Staceyfest is happening in July 20th- save the date and come through if you’re in Oakland or on the internet. The organizers say:

“StaceyFest: Disability Love and Legacy Celebration is the first disability culture festival ever held in Oakland and an opportunity to celebrate the ongoing legacy of disability justice advocate Stacey Park Milbern. It is intended to be a transformative community gathering.

Disability resources and mainstream views tend to focus on a medicalized and limited view of disability, rather than on the complex and dynamic experiences that make up the disability community. StaceyFest will shift the focus to powerful disability networks and culture, through storytelling, performance, art and more.

We plan to hold the festival in July of 2024 at Frank Ogawa / Oscar Grant Plaza. We will have a livestream portion for people to participate virtually.

*****We ask for your patience as we get all the details together. More information to come in the next few weeks.*****”

Love to you Dolores and Rawiyah and everyone who will make this space happen. Four years post our beloved’s death, grief keeps changing. the ways we hold her memory and legacy and carry it forward do too.

Be sweet to yourselves,

Leah