First time wearing this velvet blazer that I purchased back in the summer when it was too hot to wear it. Am on my way to a meeting with my committee and if I feel bold enough, I might ask them if they think this would be a good outfit choice if I got an interview for the job of my dreams.
Starting to feel a bit more like a human post-Sick Theories. But I’d be lying if I said I wasn’t grappling with a lot of self-doubt these days. You’d think that doing such a big thing would have me feeling super confident. But that’s not the case. In my morning tarot pull I drew the for of wands, four of cups, and five of swords. Using my tarot zines from @cityxwitch I put down these quotes in my day planner: “recentre without picking up our swords” which speaks to just how easy r can be to self-sabotage; and “simply admire how everything you touch becomes beautiful.” Seeing that last quote brings up a lot of emotions but it’s gonna be my mantra today, as I try to recentre myself from a place of compassion and care.
Happy happy birthday to this sweet little alien shrimp taco bb. You are one of the kindest, most caring and intelligent and creative humans I know. I love your playfulness and curiosity and the way that you support all the things I do — not because you have to, but because you want to. I’m so excited to see what this next brings as you explore and create and swim around in the world (with or without the aliens that may now be proven to exist). Here’s to many more face masks! 😘
1 DAY TO GO!!! And just in time is this interview with @julia.metraux for @guts.magazine. Hope you enjoy this chat about accessibility, illness, the university, and more!
Wow! In 2 days @sicktheories is happening. Every time people ask me how I’m doing I feel like my only response is to make a guttural noise and then talk about the conference and then talk about how I can’t wait until I can talk about something else once it’s over. ⠀ ⠀ I don’t want to be a negative Nancy. I’m sure that as soon as it’s over I’ll be crying and so so sad. Because this thing has meant so much more to me than I could have imagined — and that’s because it’s meant so much more to others than I could have thought. ⠀ ⠀ But with all of the excitement comes immense pressure. I don’t want to fuck this up. I want everyone to feel welcomed and included. All I can think about is an essay in “Care Work” where Leah Lakshmi Piepzna-Samarasinha talks about how the pressure placed on activists — and especially femmes — to make everything perfect is extremely dangerous. It threatens our livelihood. We can not be held up to a standard in which there’s no room for failure. We’re human after all. ⠀ ⠀ And we’re also humans living in a deeply fucked up world. As my friends in the US go out to vote today, I’m thinking about the systems of oppression that we’re up against. We can’t break down those systems if we’re breaking down one another. ⠀ ⠀ When I called one of my dearest friends on Saturday and cried into the phone because our ASL fell through and I’d emailed over 200 interpreters with no luck — she reminded me that this is not an example of my failure. Rather, it’s demonstrating just how broken the world we live in is. Let’s try to practice something different; let’s be gentle with one another and with ourselves.
Working with Lauren Fournier on @sicktheories over the past six months has been such an incredible experience and I can’t believe that it’s happening this week! This has been a real rollercoaster ride and a HUGE learning experience in terms of what it means to create an accessible event. ⠀ ⠀ Yesterday Lauren and I were interviewed by Julia Metraux for @guts.magazine. Sitting beside Lauren and discussing the challenges we faced and why we believe that the world needs to be so much more accessible than it is was such a life sustaining conversation for me.⠀ ⠀ We still have a few more days to go on our Go Fund Me and are almost at our goal! If you can spread the word it would mean the world to us. Link in bio! ⠀ ⠀ ⠀ #sicktheories #access #accessibility #sick #chronicillness #mentalhealth #disability ⠀ ⠀ Photo credit: @yulischeidt
Real talk: the last few days have been really hard. The waves of poor shame have been crashing hard as I try to reach out for support for the @sicktheories Go Fund Me. I know all too well that disability and poverty go hand in hand because the capitalist world we live in is super ableist and hella oppressive. And yet, each time I send out a message to someone I know telling them about this project, I feel deeply ashamed. ⠀ ⠀ And my body is being flooded by feeling inadequate and worthless. I’ve been in pretty intense pain for the last four or five days now. In part because I’m working all the time and not setting healthy boundaries. I’m afraid that if I take any time off and we don’t reach or goals, I’ll be the one to blame. ⠀ ⠀ These feelings have made it hard for me to post on social media. I want to hide under a million blankets. I’ve been reading Leah Lakshmi Piepzna-Samarasinha’s new book, Care Work: Dreaming Disability Justice, and am thinking about the intense pressure that organizers place on themselves and how that pressure can break us. ⠀ ⠀ So tonight I’m going to take a hot bath to show my body that I care about it. And I’ll gather all of my hot water bottles and put on the comfiest clothes I own, and let the purring bodies of my cats soothe me. ⠀ ⠀ Hope you’re all practicing some gentleness today 💜💜💜
TOMORROW IS THE DAY!!! @sicktheories is launching a Go Fund Me to help cover the costs of making the event as accessible as possible!! ⠀ ⠀ In case you didn’t know: Sick Theories is a student-led, volunteer-run event by and for the sick, mad, and disabled community. I’ve been hustling hard to win all the grants ($7500 and counting) but that still doesn’t begin to cover the costs of CART (communications access real-time translation) and audio captioning. Not to mention the costs of having to pay for a larger accessible venue so that the 80+ people on our waitlist can attend IRL. ⠀ ⠀ Lauren and I believe that money is an accessibility barrier and so the event is free AND we’re offering honorariums to our workshop facilitators and those in the art exhibition. But the loss of revenue from ticket sales means that we need some help. ⠀ ⠀ Tomorrow you’ll be able to show your support by donating. Some incredible humans have offered Thank You’s to our supporters (scroll through to see who). If you have even $10 to give, that goes a long way for us. Until tomorrow 😘⠀ ⠀ ⠀ #sicktheories #chronicpain #chronicillness #sick #disability #mentalhealth #accessibility #community #gofundme ⠀ ⠀ 📸: @yulischeidt
After @yulischeidt took this picture I told her that this is my “don’t fuck with me” photo. It’s the photo that I want the world to see as I continue to fight to make Sick Theories more accessible for those attending. ⠀ ⠀ Over the last week as I talked to folks about donating items for the @sicktheories Go Fund Me, they were shocked when I told them that students at the university have to pay thousands of dollars to rent the spaces on campus. How much tuition do I pay each year and why does that not give me access to spaces for student-led events? ⠀ ⠀ We need to start talking about the ways that money is an accessibility issue. Having watched my family slip from the lower-middle class into poverty, I know all too well that money is a constant barrier that we’re told we need to overcome. And I know that disability and poverty go hand in hand (this is something I wrote about for @guts.magazine last year). ⠀ ⠀ Today I’ll find out if the university is going to support us in finding a larger, accessible venue for Sick Theories. I hope the answer is yes. Because I’m tired and those on the wait list deserve to be in a space filled with other sick, mad, and disabled folks. The whole point of this event is to build community for those who know isolation all too well. ⠀ ⠀ Keep your fingers crossed for us today pals!
Yesterday I got to do a little photo shoot with @yulischeidt for a very exciting reason: this week we’re launching a Go Fund Me for @sicktheories. Unfortunately we live in a deeply inaccessible world. As a student-led initiative we believe that money is an accessibility issue, especially for those who’re sick, mad, and disabled. ⠀ ⠀ The costs for providing ASL (American Sign Language) and CART (communications access real-time translation) are much higher than we anticipated and the grants we’ve won don’t begin to cover the costs. We’re hoping that by turning to the community, we can raise what we need to make Sick Theories as barrier-free as possible. ⠀ ⠀ All of our supporters will receive a Thank You. If you donate $75 or more you’ll get this custom-made “Sick Babe” necklace from the folks at @fiercedeer AND a Sick Theories tote bag, illustration by @immateriality ⠀ ⠀ We’ll be launching this week so stay tuned for the link to donate! ⠀ ⠀
Last night was magic. It was the launch party for @invisibilitieszine and issue 1 was all about invisible chronic illnesses. To be in a space with other sick babes and others who were there to listen and support feel overwhelming in the best possible way.⠀ ⠀ Last night I chose to sit while reading. I rarely do this even when my body is in pain. But I’ve been dealing with some pretty bad pain lately: a combination of the usual + a lot of time spent at my computer planning @sicktheories. And so I gave myself permission to be gentle.⠀ ⠀ I want to see us practice more gentleness and compassion with one another. For the other reason I’m in pain is that I’m exhausted with call out culture and how it has become the norm within the leftist radical circles I run in. I want to see is shift towards generosity, tenderness, and curiosity; I want us to hold space for the fact that failure is a part of learning. But we risk shutting down growth when we shame those who aren’t doing a “good enough” job. ⠀ ⠀ Gentleness requires energy and sometimes we’re too tapped out to offer it and we default to calling out. That too is a part of the learning process. For folks with trauma, holding ourselves and others accountable can feel impossible at worst and risky at best. We need to do this work. But maybe instead of pushing yourself to stand when you just don’t have it in you, you could take a seat and welcome others to sit with you.
Warning: super mushy post coming at you despite no special occasion except that I love this photo of David Jones and I taken at the Vault's launch party last week. This human has been such an incredible partner over the past year and a bit that we've been together: coming to all my readings as I try to embrace being a writer; holding me as I cried after my father died, as my C-PTSD flared, as I waited for my next doctor's appointment; celebrating my accomplishments and affirming me in all of the work that I do. I think this photo by @alysonhardwick really captures how good I feel with this special creature.