what it's like to make a disabled QTBIPOC writers' residency/ body as lab/ some announcements

schuykill river at dusk, quarter moon abovehead, bridge in distance

a very puffy Maine Coon cat lies with her ears perked next to a royal blue bag of KN(5s and a laptop with Signal threads and a Desire Hope Despair sticker from @cyborgmemoirs, on some thighs, a blonde wood coffee table and blue rug in background.

Rep. Rashida Tlaib, a Palestinian woman in her late 40s, holds a sign that says War Criminal as she looks full of rage and what the fuck surrounded by assholes in suits in the US Congress, as Netanyahu speaks.

a shark, respondent in a buff mushroom sportsbra, tattoos, lies on a orchid pink cushion gazing upon the viewer

an MRI without contrast of my left hip joint, showing: “Full thickness cartilage loss of the left hip with associated marginal osteophytes, joint effusion, and intra-articular foci of cartilaginous debris. Associated degeneration of the left hip labrum with degenerative tear anteriorly and superiorly”

some shots of how it’s been lately

hey all

how you be?

Leo season hit and I’m taking a breath after some truly wild astrology and times in the world and my life last month. shit is still wild, catch your breath where you can. I’m burnt out and snatching happy, contemplative, digesting new diagnoses and unexpecteds.

about to go back to MA for the first time since I fled the scene of the crime last October, teaching at Franny Choi’s Witches and Warriors BIPOC writers retreat, ten minutes from a very busted “youth nature camp” my mom sent me when she needed childcare. looking forward. ursula k .le guin said true journey is return.

I’ve been working hard on some projects I’m proud to announce. a lot of good things happen in the dark and the quiet. here’s some of what’s been gestating in the secret project lab for the last bit.

first up: book of poetry/ the way disabled people love each other

I never do this but fuck it: I sent the manuscript of my fifth book of poetry, The Way Disabled People Love Each Other, to a publisher I work with last week for consideration. I’ve been working on this book for 4-5 years and it finally got done. it’s love a lot of ways all not might what you expect. odes and honorifics to the dead gone, remembering the dying and dead parents who die without saying sorry, some how we survive(d) the pandemic and not, and how you go home and then leave thr grief house again. my friend said it cripped grief and memory. I’m proud of it, I worked hard on it, I’m hopeful it’ll be in the world next year. stay tuned. clap for me. get your shit done, I’ll clap for you. I’m clapping for you now. I’m clapping for all the pauses when it’s not the right time yet where the work happens.

second: SPMLAC/ what it’s like to make a disabled QTBIPOC residency space

I am really proud to announce that the inaugural Stacey Park Milbern Liberation Arts Center residency, a project of Living Altars (the biggest little secert project I do, watch this space for more announcements) is kicking off in spring 2025 at Tidal River residency, a disabled-made accessible artist and writer’s residency in Nova Scotia, Mi’kma’ki, It was originally going to be kicking off in early September, but some issues at the original residency site (ie, a crucial part of the water system broke and wasn’t going to for sure be fixed by the time we were supposed to be there) made me reschedule/ postpone.

I have been working on SPMLAC for four years ie since Stacey died, and I am really, really proud that it is finally happening.

When Stacey died in 2020, I made a promise right there in my blanket snarl clutching my phone from where I’d just gotten the news that I would make a writing residency for disabled QTBIPOC happen, for her.

A lot of people knew Stacey as an organizer, but I met her as a writer. We met via her wordpress blog, cripchick, when she was 22 and still living in the closet with her family in Ft Bragg, North Carolina. She was an incredible poet and writer whose writing was elegant, real, beautiful and also plain spoken- anyone could understand what she was saying. So many people had their lives changed by Stacey’s writing.

In the year before she died, she was working on a book, but she died before she could finish it. She was working a full time day job, being a full time (or let’s be real, much more) organizer, and managing both her existing disability and a cancer diagnosis. She still wrote but there was always something else she had to finish first. Like a lot of us.

I’m going to quote her, (and do the goofy thing of quoting myself.) This is from my essay “Disability Justice Writing: The Beauty and the Difficulty” published in The Future Is Disabled.

Stacey texted me in late summer 2019, really excited because she was committing to writing a book. She was taking it in when people said that her writing was powerful, that every Facebook note or long comment she shared was epic, things people reposted and shared and asked where they could get more of. And that wasn’t even mentioning her essays, talks, teaching gigs, videos, keynotes, and poetry. In December 2019 she created a fundraiser to help support her writing time and asked me if I would be willing to give her some coaching or work with her to support her around her book practice. Of course, being Stacey, she made the fundraiser fifty-fifty going to her writing practice and to Creating Freedom Movements, with a goal of $300 a month, which means she would only get $150 a month. I texted her, “You making your Patreon also into a fundraiser is the most Taurus move ever” to which she texted “Thank you for seeing me lol.”

She wrote:

Many friends have asked me to write a book and have offered emotional support, but I have had difficulty prioritizing writing when it feels like all of us in the Bay are hustling hard to pay the rent and keep each other safe. Even as a physically disabled person I myself work full time and two side gigs to pay the bills ... any time on top of that is spent supporting community/queer fam ... My goal is to raise $300 in monthly donors to support CFM 2020. From Jan–Dec, I pledge to write 5 hours a month if we raise $50, 10 hours a month if we raise $100, 15 hours a month if we raise $150, 20 hours a month if we raise $200, 30 hours if we raise $300. (Emphasis mine)

I’m so proud of Stacey for challenging herself to make time and resources for writing. But five hours a month writing is not a lot of time. I see the ways she struggled to feel OK taking time on her own, just to write. She didn’t feel OK fundraising just to be a disabled writer—she had to justify it by promising to work and raise money for the movement spaces she was supporting. When you do the math, you also realize she was paying herself only $10/hour.

The words: “Even as a physically disabled person I myself work full time and two side gigs to pay the bills ... any time on top of that is spent supporting community/queer fam.” To live in disabled community means that there is always a crisis. Someone is always crazy, in a crisis, or dying, and loving each other means noticing and giving a shit. It also means that you are the one people trust, and you are the one who might have certain skills, from listening to someone in crisis without judging to being the one with the list of medicaid therapists who aren’t awful.

Being close to death can push you to write. But when you’re sick and in pain and in and out of the hospital and needing to work gigs to pay bills and to keep your job so you can have health insurance, and you’re tired, it’s a hard promise to keep. This is one of the key rea- sons why there is not as much disabled BIPOC writing as you would hope. We could die, and in the meantime we are working, organizing, resting, and responding to community need.

***

Before LL died, he told a mutual friend that, “you know, I love “the movement” and all, and it saved me but it also killed me. Don’t let it do that to you.”

***

There’s a lot of ways we get pushed to be functional and normal and utilitarian in our work, especially as time goes by. The exact same thing is, could be, already did happen to DJ that happened to second wave white or multicultural rape crisis work. Professionalization. Show up on time. You can’t just have been molested, you need an MSW. You can’t just be sick and nuts, you have to have papers proving you are a Licensed Crazy. You can’t write poetry or stories, you have to write a toolkit or a 101.

I want us to have space to be weird and crip and write and just be.

Shouldn’t be so hard but uh.

***

Surprising no one, there’s almost no accessible (any way you count it) “residency” spaces, I’m not just talking about the elite/ fancy spaces but also the smaller DIY ones. Heritage buildings they claim they can’t ramp. Ramshackle places without enough money.

With one exception, I have never had a “you apply and get in to a fancy space writer’s residency.” All the ones I’ve made have been self directed (I went to an air bnb and rented it) or were at a queerdo land project that had very self directed residency space.

The one exception (and it was fancy enough but not Posh, if you get my meaning) was Norcroft, a second wave feminist residency in way northern Minnesota that doesn’t exist anymore that I got space at in 2004. Founded by a white lesbian who inherited her family’s wealth and country land, she was kinda-secretly disabled and had money, so the place had ramps and food and a fragrance free ask (which freaked and pissed me off in 2004 where I was secretly disabled and could barely afford my own lotion and did not really have money to buy the shitty frag free products that existed.) It was free and they would pick you up from the bus stop.

I took a midnight greyhound from Sault Michigan after my girlfriend drove me over the border from Sault Ste Marie ON, her hometown which we were visiting, got picked up by a white lesbian from Duluth at 9 AM outside the diner where I’d just eaten “freedom fries” (it was 2004) and dropped at this place on Lake Superior where they bought whatever food you wanted if you wrote it on the white board. They also had this controversial policy that I loved- you couldn’t talk to anybody, or at all, til 4 PM. The founder said bc of sexism we would all feel guilt ridden and like we had to chat with each other, and she wanted us to ignore each other and write. I don’t know that she meant it in an ND way, but it suited me just fine.

I also had been broke and sick and working three jobs and managing crises, just like Stacey, and trying to write when I had a second. And I didn’t have many. and in the two weeks I was at Norcroft I wrote more on what would turn into Dirty River than I’d been able to in years.

But ever since then I get rejected from residency apps, and sometimes I wonder why I bother appealing to those spaces that are supposed to spoil and support us and mostly just would annoy and (maybe) kill me. Mostly, I don’t. My time and spoons are short, and most of those places have low to zero access and make you eat with people inside so you can get COVID. I go away and turn my phone off for a week. Most friends I know do the same.

However, I would like us to have those spaces of demanding silence where we get to just write, not survive. And I would like there to be someplace for us. There’s something about a place where work gets made, where you know people like you have made that work before. I want there to be more crip/ ND non-white writing in the world, and in order for it to be there, I want there to be a place we can write that is beautiful and not our house and where we can also get into the fucking shower and there is a place for our PSW to sleep and we do not have to be surrounded by the NT.

The past four years since I made that promise has been a fucking journey of researching, dead ends, doing a community survey of what people wanted, looking into residencies that said they were maybe accessible and then weren’t or there was some other problem or the project collapsed or the residency went bankrupt or the other folks working on the project didn’t care as much about access as the main person so it didn’t happen.

I did a survey in fall 2022 asking BIPOC disabled writers what they would want in a residency and the results were, uh, enlightening:

• there’s this idea in residency land of you’re in some pristene wilderness a million miles from anywhere where you can Access the Muse, which is of course usually unspokenly completely married to colonial ideas of “pristene wilderness” that erases how that land is soaked in blood and stolen by white murder of Indigenous people.

• but also, people didn’t want to be in the middle of nowhere. people wanted woods or the ocean but they also needed to be able to get to a hospital or wheelchair repair place. people also needed to be able to get mail and delivery. People were already often too isolated, they didn’t want to be even more so,

• They wanted to not be in hardcore militia country, it’d be nice if it was a Black or brown area but also no one expected there to be zero racism and a lot of people planned to just not leave the land at all.

• people needed stuff that folks might expect when you say access- ramps, accessible bathrooms, no COVID death policies- and stuff that folks might not expect- no forced togetherness, fresh water, the ability to not talk. Stuff in the middle like places that do durable medical equipment repair or a hospital within 30 minutes, the ability to get shit from the evil empire (Amazon) or the like if needed, or takeout. A lot of people though exurbs or country-surburban would be just fine.

• most important and most tricky to find: every single person said, this needs to be in a place shielded from the worst of climate emergency. no floods, fires, hurricanes.

it’s been real interesting to veer between looking at places that are earnest social justice land projects that do or do not have access or don’t even know what the fuck it is, places that are halfway there but not quite yet, retreat spaces that are ADA compliant I could rent for more money than I currently have, places that are old youth camps or former kids’ hospitals that have some of the best physical access but are haunted by the ghosts of dead disabled children. true story, that’s what artscape gibralter point is in toronto/ t’karonto. when I was there a re few years ago i was like why is this place so physically accessible and my friend was like uh old kids’ hospital, that’s why, ramps but also we’ve seen a bunch of ghosts and had to set up an altar for them. mostly I’ve wanted to just fuck it buy my own house with a MIL in back and make it access and make the residency there, but the money my mom improbably left me from the sale of her modest house that might help fund this is still in probate.

but here we are. it’s not huge. it’s something. it’ll be next spring. it’ll be at a renovated in progress disabled house. it’s not “an institution.” I don’t know why we would fight to be institutionalized more, lol. I’ll let you know how it goes.

Borealis Foundation’s Disability Inclusion Fund’s Disabled Joy grant gave me eight grand for all of Living Altars business. We got a fiscal sponsor, they take 10% so that’s $7200 for everything. I’m not paying myself to do this work right now. There are costs (accessible van rental, plane fare, food, gas, stipends, someone to be a support worker.) If you want to support the work, you can Venmo @Leah-ps or email me if you want my paypal. If you want or need a tax deductible thing, you can send money to our fiscal sponsor, Autistic Women and Nonbinary Network, marked “for Living Altars”

I want to build something big small that will last and I have so many misgivings about anything becoming any kind of institution. so let this stay small, significant, quiet and flexible with the hurricane winds that are here.

third:

screenshot of Texta, Leah Manaema Avene and me on a trans hemispheric Zoom

In October I will be taking a long crip trip on a busted hip to Naarm/ Melbourne at a residency at TextaQueen’s TheySwarm residency for “diverse and dispersed artists, queer and trans, Black, Indigenous, and people of colour with priority to disabled artists.”

Texta is a long term friend and someone I collaborate/ dream with/ figure shit out with together (their work is on the covers of both Care Work and The Future is Disabled.) I’m going to be there to bring some of my dad’s ashes back to where my grandmother and great aunties are buried, to be on unceded Wurundjeri land where my Sri Lankan family migrated in the 1970s. try to find some birth family. then head on to Singpore and Sri Lanka where i have, respectively, never been and have been able to visit once.

mostly I’ll be on a spirit journey to chase some ghosts and ancestors and walk around where they lived. feel things and see who shows up. I have some plans but I also am going in trust. a friend who went back to the Philippines said to just go, trust it and see what opened up. that’s what I’m doing. it’s antithetical to the whole hot to go super structured bent of the world right now, but that’s why I’m doing it.

Texta, Leah Manaema Avene and I are going to be doing this day long Access and Ethics Rider workshop- which will both go over how to create and negotiate with an Access Rider for your and collective disability access, and also an Ethics Rider which will speak to how to deal with right relation to local Black and Indigenous communities where you may be traveling, as well as dealing with Zionist and fascist repression of your work and speech. You can register in Naarn or anywhere in the world for another couple of days here.

Finally, I’ll be relaunching Hard Femme Poetics, a writing class I taught and loved teaching, for the first time in lucky 7 years this winter (online.) Watch this space for more details.

finally finally, here’s a little piece I wrote.

Body as Lab

body as lab

thump thump thump thump

new post covid

my body is a lab and an experiment with no thesis

lying in bed fetal position after my court date

heart chest burster 31 years going on.

is it POTS is it my long term panic is it neuroinflammo? only their hairdresser knows for sure

i prepped for court by not prepping. being like whatever its a continuence, nbd. x. says sometimes saying its fine is the best disabled working class hack. it’s regular it’s whatever is a containment practice. i joked about getting it’s fine as a tramp stamp.

then the day comes where that worked but you finally have to turn around and face it and like me, you may heave cry from your guts and your kid places after. there’s the monster. it’s really that bad. it’s really not fine. then you have to figure out what to do with the chestburster when it bored a hole in your chest.

i had other real reasons for the return of my panic like the astro  of this week needs to be on time out. the ass attempt, biden covid and the republican national convention, biden dropped out. perfect storm plus bodymind fraying in this climate change heat.

i have raw data to sift through from all these experiences. examine from my post covid crip crazy body’s lab on the couch or the toilet, not for consumption but meditation.

new body is tender like newly forming skin of my scar, still figuring out what she can do, what she is new crip in an old crip body. maybe you got used to being an old hand, knowing what you could do, but this is bringing you back to the tender edge of when you were newly sick, tentative figuring out what you could do, what helped what didn’t. it’s frightening to not automatic know your shit but remember: those baby crip tools in you never left you.

two years after my book where I wrote about the disabled future maybe we will all be sick and sad, we are indeed all slow and sad, the one out of 20 who has long covid and those who don’t know and those just fucked by everything. bad shits, heart panic, overwhelmed, can’t think, nausea, SI come back uninvited guest.

gripping on to the old ways of even last year may not work. i study up, note how the heat and light of july flare my sensory and my pain. note how more sensitive/ erratic my body and brain stem have become for now. cling onto idea of neuroplasticity. make notes about what I watch myself do.

I got asked how does language free disabled people? What would you imagine as a positive alternative to the existing medicalized/ableist language around disability?

i say, like if the DSM was written by us but like…. not the DSM. because us becoming another book to beat each other over the head with is not what I want. I just always found liberation in you know my shit doesn’t bend that way or mixed states, you know, that time where you get “I’m so happy I could kill myself” like ecstatic then jumping off a bridge the next minute? I did this and it worked, or intrusive thoughts, I just snapped a rubber band against my wrist until i got distracted out of the brain weasel loop, you could try that. do you want to talk about cats with me.

you can’t standardize any of this clean and white and sell it.

for a long time I thought disability justice could nevet get ripped off or coopted because we were just too wild and gross. now I see that in some ways we can be, are. the scale of need is so big it is tempting to say yes when they offer us the chance to become the standardized solution.

the solution is to refuse that. even now in the majority disabled present, the new covid disabled masses. especially now. one clean simple way of standard won’t fix anything.

i look up research in my body’s library, read the books just added in the new and interesting section. share it out to others doing same. sick sore and sad. changeable. the long covid survival guide says, this is a brand new disaease so data is still being gathered.

we’re our own lab. noncitizen science lying in shedding sheets examining ourselves.

this aint new. this is still some of all we got.