a month before 50
on the road after 5 pandemic years, disabled minutia memory box, conditional illderhood, culture work in culture wars
Hi, earlier this month I was like, “I’ll write my real substack of the month soon, I’m on the fucking road!” I wrote this and then I was like, wait, it’s April. Lol. Here you go.
This was framed as “it’s just a little guy, no big deal” but instead here we are with a full 5k words yet again. One of my favorite writing tricks is to tell myself “it’s just a little guy, no big deal.” It feels like a crip mind trick, a dialation of time and spoons where telling myself it’s no big deal allows me to then take the pressure off, and I can write something more grandiose. I also have more respect and awareness than I used to for how much time and spoons it takes me for to write these. I can’t just crap it out like before. So please enjoy this small big grandiosity.
but first, the news:
living altars had our first kitchen table/ living room online hang out/ writing time for sick, disabled, ND and Deaf QTBIPOC writers and creators last night and it was really cute! I was nervous because who am I to do anything (lol) but people seemed to really appreciate the space to connect, talk about what we’re dealing with and thinking about as disabled QTBIPOC writers in this moment, and write together off of the prompt, “write some real disabled shit.” making this space, for us to gather (esp as we are cultural workers during a culture war against us) has been a long time dream intention of mine and I’m glad it worked. we are going to keep doing these once a month as more private/ offline space for safety and trust and so my brain doesn’t break reasons, and as spoons allow, Living Altars will also host some more open to the public spaces. watch this space for more details
bigger announcements later, quieter announcements now: Tangled Art+ Disability is hosting a mid career retrospective of my life’s work so far this fall, six months post my 50th birthday. sick reading nook, performances, installations, timelines of my work and what was going on in your world and the worlds, zine corner, ephemera, club cards, video of performances, panels, living archive, robot with IPad and docent doing virtual tours, CART and ASL, audio description etc. it will be good!
I can’t remember if I said this, but I signed the contract for my 5th book of poetry. The Way Disabled People Love Each Other, will be published in spring 2026 by Arsenal Pulp. never a better time to have a “Canadian” publisher. I’m looking forward to sharing these poems with y’all. thank you for waiting six years.
The friends at BEAM are supporting Living Altars and the Stacey Park Milbern Liberation Arts Residency in particular with some money. Thank you for your radical Black queer mental health and healing work, and for choosing to be in solidarity and support of the creation of this respite space.
captain’s log stardate whenever/ some thoughts on disabled in person touring after 5 years
I spent 15 years of my life traveling for work. gigs, workshops, Take Back the Night guest speaker, lecturing, performing. co-running a QTPOC performance tour and DIY booking tour for of most all the books I wrote or co-edited. 2004-2019/early 20. I never took it for granted. Mobility is a privilege and a luxury, and I spent a long stretch of years before that barely leaving Toronto. It’s a leap to go from living in your bed and not having subway fare to leave your neighborhood to getting colleges to pay for a bus or a cheap plane ride.
A lot of people who loved me blinked and winced watching me while I did this, so worried about what all this tour was doing to my body and how the fuck are you pulling this off? but I did, I did. Even with post-security bags of free ice from the coffee chain cradling my dying joints on the shittiest US airways seat and getting second stage small roomed at immigration, picking up every virus and coming back to an empty fridge and shoot, I want to catch up but I have to travel again, it was still a crip magic carpet, a echolalia spell saying I’m not trapped in my mother’s house. A way of honoring the part of her working class disabled self who also for a time, found ways to magic travel into happening sometimes (o my ND mom who saved up money to go on a one week trip to Ireland fishing when she was 28), but then didn’t really leave Massachusetts for the last 40 years she was alive.
Tour the way I did it was, for me, a way of accessibly making money in a chunk of hyperfocus time that allowed time for rest after. It was also a way I got to build and maintain friendships and comradeships all over North America. And, shoot, you want to pay me to read poems, perform, talk, teach, lecture? How lucky am I.
Then 2020 came and the road stopped. My last touring gig was in February 2020, Ejeris and I brought Beyond Survival to L.A.- bookstore gig, big meal afterwards all crowded together inside, crashing on a friend’s spare mattress, all the things that would be soon gone. We went to Seattle, did one last event, went into lockdown right after and I never really came out. Tour moved to Zoom and stayed there.
And, my busted knee healed. I was less panicky, less crispy, more able to be present and real in an unmasked way from the comfort and access of my home with everyone else, more present and unmasking. It was easier to slow down, pause, have captions. If we got sick or an interpreter did it was a snap to reschedule.
I looked up and five years had gone, and last week it was a heavy travel time for me for the first time in five years? This used to be my life every spring. “high touring season” my friend called it: March and April is when colleges want to bring you to speak, perform or do a little dance, so you shake it and head out on the road to make your money. heavy for me now is three gigs, not 30. but still. make it to the train on time, figure out how to get from point a to point b, does the hotel have air fresheners even though we called, a window that opens, a tub to suck the pain out? Oof. all the disabled admin, as Margaret Price calls it in one of three books I suck up that all have to do with time, on my ride back to Philly in seat 1a disabled, I have not had to navigate this in a long time.
brief notes: damn i missed the road. damn this is weird. damn a half decade in I can’t mask anymore and I used to mask in a specific way at every in person gig. damn I am grateful for these in person spaces that said yes to (the other kind of) mask require, hybrid and air purify, but does it feel like I can be more present with people on Zoom sitting in my jet engine office chair, five years in? survey says yes. some exceptions apply.
for decades when I hit the road doing college gigs I conceived of it as both a way of supporting myself and an organizing opportunity. I could be part of the fore-guard, spread the good word of DJ, share readings and tools from my life and communities’ work. now it’s all these years later and most of the real shit popping off in my phone that’s what I want to talk about, doesn’t feel safe to share.
so much rush back to in person is better and damn yes this skin is hungry for certain kinds of touch. but I don’t want it the way it used to be. This kind of tour, as sweet as many moments were, felt like a ghost in the machine of an old world.
A few weeks ago, I went to the Philly launch for Dismantling the Master’s Clock and realized only once I was there that it was my first bookstore reading I’d attended in five years, since that L.A. bookstore reading, in fact. My skin relaxed. It felt like the kind of disabled space I want, bringing the best of what I like about online, slower, presences that are neurodivergent and come as you are to an in person space. Something about how it was a mostly (face) masked, Black queer lead space, quiet, present, ok to be weird, outside of institution walls.
disabled minutia, disabled memory box of life under fasc.
this blog is disabled minutia, small notes of what makes up daily life, a memory box, aide memoire, a journal for these times. if I don’t write it down I forget it, even before covidperimenopause. every big disabled thing is a mirror box of a million disabled small things.
This substack was entitled postcards from the end of the world somewhat blithely back in 2019 when I briefly started and then dropped it, and as I’ve revived it over the past year and change, it’s become that in a less off the cuff way. it’s snapshots and documentation of what things feel like as time goes by under genocides and fascism and climate disaster. It’s a public diary. It’s a recording of what it felt like as it was unfolding, individually and collectively in a time where it’s hard to remember what happened two weeks ago. it’s written not out of navel gaze but to leave a record, and in doing so, to map changes and to perhaps offer folks reflection and a mapping of their own.
These first three months of 2025 have already felt like a year. time bends like it always does, more so and different now.
notes from a couple weeks ago: my best longest friend writes me from toronto three days in a row, asking me with increasing urgency how I am. when I have a sec to get back to her I tell her the truth, that living in amerika under the current state of fascism, for me, is boiling frog and also like “I had a good work week where I got stuff done, my scheduling date with my chosen family on sundays where we shoot the shit and map out our weeks is working.”
And maybe that is denial or compartmentalization. But it’s also, when I keep my eyes in front of me, when I keep focused on the work I am supposed to do, I’m ok. what else can we do?/ this is what we always do.
So what it’s like right now is also the moment a few Tuesdays ago where me and my friend met up and drove down to the big old space by the river with four boxes of donated masks and a giant thing of hand sanitizer crammed in the back someone donated to us from another mask bloc, got them into the storage unit a friend there lets us use, and sat on a picnic table bench after in the late winter sunshine, looking at the bare but budding grey brown late wintertrees, promising us that despite it all spring is on its way. watching the sunset and the branches moving, and talking about air quality gossip and the hexovalent chromium spill into the Schuykill last summer and how people there saw it three months before the story broke, thought it was algae at first but then were like that’s way too bright green, and called the EPA yep during Biden, and everywhere, and no one did a goddamn thing.
Or making it to a meeting late but getting a commitment that we can get a bed to grow lung herbs for distro at the community garden and two people say they’ll grow starts for us. Or taking my trike out for the first time since November and going wheeee with the joy of pushing her up the block.
All this shit can look like some precious impressions “There’s coffee to drink and cats to pet” tweesauce. I don’t mean it that way. I mean I want to write to record these stark clear everyday moments of disabled organizing and being together as how now is, sitting together on that bench, watching the sun start to creep down.
This moment and place in time hopskips in my mind from that moment to the one in 2011 in Oakland post Fukushima when Stacey said my disaster plan has been to die in my bed and us saying, ok fair but what can we do instead. To the apocalypse survival map we scrabbled together, buried markers and notepaper in a jar at the traffic circle a wheelchair accessible height so we could write messages to each other when the phones went down. To wildfire mask giveaways in 2017, 2018, #PowerToLive in 2019, to now. “I never thought we’d be replacing the fucking public health system, but here we are!” one of us cracks - imperfectly, as the the apoc we awaited arrives.
It’s a disabled survival timeline of what we began to imagine 14 years ago in small everyday moments, the seeds we sprouted in 2011 spreading out, how we built it all out in ways we could not have expected. I use these memory pictures to ground myself, to hold onto the knowledge that I /we can continue to create a next thing, because we already did.
Conditional illderhood
On my way to Boston for the gig, a white disabled queer person in their late 60s asks why on a panel about aging no one on the panel is a senior? It’s a fair enough question, the oldest person on the panel is in their mid 50s, and the way the panel was titled and described was a little unclear about, is this a panel about being disabled and over 65, or is it about crip time and aging across disabled timelines where there’s not one standard experience of aging and elderhood? It was the latter, that maybe could’ve been clearer. I didn’t curate the panel, but agree that having someone or ones older than their 50s on the panel would’ve been good, in order to speak to experiences of crip time and elderhood experiences and the impacts of ageism from the place of being 65, 70, 80, 90.
But also, a lot of disabled BIPOC don’t always get to survive to get old-old, for specific reasons, and I’m frustrated so many white disabled people STILL don’t seem to get that. I’ve watched white disabled folks define the “we” of disability for years and sniffing in defensive obliteration when BIPOC disabled people say no, that’s you, our stuff(s) are different, maybe part of my baby illderhood is being so goddamn incensed that all these decades later it’s still the same bullshit. Partly I don’t give a shit, caring what disabled white people think is not my focus or my life, and yet the beliefs they have then do go on to run rampant and fuck things up for the rest of us.
Also, I’m tired. It’s March and I’ve had a memorial a month since the year started, where no one who we remembered and buried made it to 55. Also I am afraid to write and post this and edited it 900 times because I’m worried that if I’m this honest you won’t want to hang out with me because what a downer.
There’s senior and elder, and senior is in part a number set by the state at 65 or 72 many of us never get to get to because of the realities of Black and brown disabled necropolitical death. And elder is relational, conditional, experiential, a practice, not automatic. As my friend said, eldering is not always based on what age you manage to survive to.
Three weeks ago I attended the memorial of someone I was friends, arguers and lovers with who died Black and neurodivergent and disabled in their mother’s house at 54 last fall. This year started with someone I’ve knew since they were a teen twenty years ago dying in their 30s and I still don’t know how, but know they were disabled, trans and Indigenous in the South “having a rough patch,” to put it fucking mildly, and facing an incoming Trump administration that they knew would criminalize so many things they needed to live. At one point I want to reply all my friends are dead (in their 20s, 30s and 40s) bruh, but bite it back, especially because it’s not all, just a lot, and I don’t want to call anymore in. Instead I write an activated low blood sugar rant about how getting to live to over 60 is not something all of us get to survive to when so many disabled BIPOC are murdered - by police, prisons and medical access denial, sure, but also by the death of a thousand cuts of medical neglect, or being tortured in a million ways into killing yourself or overdosing. Our elderhood is different, our life timelines are different.
I feel bone tired grief frustrated mad in that moment at the ways white disabled spaces still won’t take in how BIPOC disabled realities are different than theirs, like our early and so many deaths. Deaths and shorter lives that are not abstract stats or issues, but my life, my friends, everyone I care about- whether we die or just are affected by those we love dying or being close to death.
Then I get to Boston and twenty minutes before the panel starts my friend is texting me about Lilac being in the ICU and how probably she’s leaving us. I have to step on stage and talk about what disabled time is in front of a big spinning globe, I disassociate through it. This is a real life moment of early disabled Indigenous Two Spirit disabled death, this femme beloved by so many. What is crip time? This crip time is, she is about to go.
My other friend texts me you know there’s actual official stats that in the u.s. elderhood for just LGBTQ people starts at 50 because of the ways oppression cuts lifespan, right? And that’s not even QTBIPOC or disabled QTBIPOC elderhood for whom I don’t know if there’s even stats. but my best guess is yeah, many of us reach there at 40. I learned from Hailee at the panel that when the social security administration was created in the 1930s, it decided to define senior as starting at 65 because back then most people didn’t survive to 65- that way they wouldn’t have to pay out so many benefits. planned exclusion from state systems of “care” is nothing new. Neither are the ways anti Blackness, wars, colonialism and political diseases forcibly shorten lifespans.
I text, I don’t want to go to anymore fucking funerals. My friend texts back, I wish that was possible.
I wrote this when I was working on Care Work a little under a decade ago:
In the last few years since I turned forty, younger disabled QTBIPOC have started calling me “elder.” While I’m honored that they see me as someone they respect and have maybe learned from, it also makes me feel a little desperate. I know that part of why they are naming me as an elder is because I’m the oldest disabled QTBIPOC person they know.
Many sick, disabled, Mad, and neurodivergent older people don’t live to get really old. Sometimes that’s because of progressive disability, but it’s also because of systemic oppression. So many of my sick and disabled QTBIPOC elders are in trailer parks or living in a motel or moved back in with their shitty family because they didn’t have a better option. When that class and location slippage happens, they become really invisible to younger hip queers really fucking fast.
A month before 50 and 5 years into pandemic, I big sigh, yeah, maybe I’m finally a bb brown illder. Still searching, like I did when I was about to turn 40, for what that will mean for me, what I want it to. I feel lucky to have peers my age, but so many of the people I was peer with died, and many of the people I looked to as Black and brown disabled elders died or will die far younger than the demons in power who will live to a ripe old white demon death. Finding BIPOC disabled friends and mentors older than me is a scrabble, the ones who survived are diamonds. I came of age as BIPOC queer maestra writers- Audre Lorde, June Jordan, Gloria Anzaldua, Sylvia Rivera- all died of cancers and chronic illnesses in their 50s in the late 90s early 2000s. I wonder if that will be my fate too. I hold out a handful of examples it might not be.
There’s so many missing generations, from AIDS, prisons, drug and civil wars, diabetes and the kidney clinic being down. There will be many more from Long COVID, climate and whatever camps they might force us into. We’re still in an unfolding emergency whose ending we don’t know, but COVID already dropped glonbal life expectency 1.8 years, and it seems likely that mass repeat COVID is ushering in a future present where people are already dying earlier of mystery strokes, heart attacks and opportunistic infections, or depression and sucide. Our experiences of illderhood and at what age we hit it at will thus waver with these multidemic times. Just like they did during AIDS and Spanish flu.
Different times, different pandemic eras, but lately though, I feel Amber in me and next to me, what I learned from watching her when I was her intern at the Lesbian AIDS Project back in the day in 1997, and she was the age I am now. Being that old broad bitch who’s seen a lot including the deaths of loved ones and can kitchen table oh yeah, back in xxx when that shit went down with the best. Holding my griefs with you, but it’s not the only thing we hold.
***
final notes:
I’m slowly reading, savoring and learning from Dismantling the Master’s Clock: On Race, Space and Time by Rasheedah Phillips, and am very grateful I get to learn from the thinking within. Everything Phillips shares about Black quantum time, spatial and temporal justice and autonomy is stretching my brain and making me study hard. The reading guide is here and “is designed to provoke inspiration and fortify the quantum entanglement between the spirit of Dismantling the Master’s Clock and the reader’s lived experiences and felt knowledge.” I have not gotten yet to reading about Joy Tabernacle KMT’s work on grief reparations but I am looking forward to it, among many other parts.
Love to everyone mourning Lilac Vylette Maldonado’s passing. Lilac was a sister, a friend and a comrade to many many people, a truly kind powerhouse and someone I respected. I will post if I hear about public memorial stuff or fundraising. For people wondering about her zines and writings, I got word from a friend who worked with her at Fireweed that friends are working with her family to figure out how to make her work accessible and archive it as well, hopefully in the next month or so there will be more clarity and news to pass on.
My friend Kirya Traber is doing a fundraiser to support her recovery from an aggressive systemic treatment resistant infection. “Kirya Traber is a Black queer femme artist and cultural worker based in Brooklyn. She’s a nationally awarded writer and performer, and is currently trying to make her podcast addiction into an audio career. Over 20 years as an artist, she has made numerous works with youth, incarcerated folks, and in support of various social justice causes. kiryatraber.com.” She’s also fully self employed and may be out of work for six months. Share and contribute if you can.
onward, sideways and back,
L
The authenticity of your posts is always deeply appreciated Leah. Thank you for being here and for being a treasured guide and community elder.