I had walking pneumonia last week, too, my second pneumonia this year. I still have it as I am writing this. And right after I went to urgent care with shortness of breath Tuesday night late, after telling my partner i was just fine for days, and got the diagnosis, I was still thinking about still getting on a plane to L.A., with pneumonia on three days of antibiotics because the doctor said it should be just fine. I listened to my body, but I had to fight to do so. My sick and disabled friends had to say, NO when I asked if maybe possibly it was ok for me to fly, it was just a mild pneumonia and I needed the money and wanted to do the gig. I had to negotiate while I was sitting in the chair at Rite Aid waiting for my antibiotics to be filled, asking them to see if they'd be open to me doing it on Skype so I could be at home, not on a plane and a shuttle. And I still wished I could be there in person.
Let me be clear: I am very clear I am nowhere near Prince's level of fame, talent or world domination, his place in the world and what he meant to folks. But I am a writer who goes on tour, and his death made me think about some things about illness, pain and being a performer.
So here's what I've got: To me, it feels like performance and writing and art can last forever in the minds of those who witness it. And it's also fragile and easily forgotten, especially if you are a queer/trans artist of color, a disabled queer/trans artists of color, an artist coming from being working class or poor, a rural artist, or all of the above. I often feel like if I stop, everyone will forget about me in five minutes. And this doesn't come from nowhere. It comes from seeing Black and Brown queer artists I consider my friends and comrades and also mentors, people a little older than me, people who I looked up to and still do, who shared their skills of how to book a show, how to write a grant, how to believe in yourself as a QTPOC artist. Artists who maybe hit a rough patch where the thing called life was happening a little more than usual, or just changed what kind of work they were doing or how much they were doing it, and folks a little younger than me say, "Who?" when their names come up. The laws of perpetual performance motion, as I've experienced them, dictate that you've gotta just keep saying yes to people who want you to come perform or write or do something, because if you say no, the wheels will stop and it's all over. Maybe (probably) this feels different to folks who are artists who have access to wealth or a trust fund. But for most of the rest of us, I think it feels really different, and the model we are taught is to never stop.
I know the feeling of panic when the three gigs I was counting on for fall 2014 all fell through and I was (really) short on money and scared. I know the hustle, the scramble to get money together, to email and email following up. I know all the ways we are superheros, what it feels like to perform right after puking or having a panic attack and making it shine anyway. I know the ups and downs and the waiting for the check to show up. I know the feeling of loving what you do and having adenaliene carry you. I know the feeling of post tour crash after you are home safe in your bed and your body knows it is safe to finally get sick, when you get sick and sick and sick. I know the feeling of fighting to stay relevant and known- not because you want to be famous, but because if people know your work, you'll get work and your work might reach folks; if not, you won't and it won't. I know the feeling of loving tour, of feeling blessed to be able to travel around and do what you love for folks. And I know the feeling that you are lucky to be able to do your work and you just have to keep going and going because this is not a 9-5 job, so all of this is worth it, right?
As a particular kind of disabled person who for years was broke and sick and unable to leave my neighborhood much, let alone the city, touring was both something other working-class artists explained to me as a way of making a living that could work with the peaks and crashes of a chronically ill body who had fatigue weeks and energy weeks, where you could make a chunk of money and then live frugally off of it when you were sick or tired. And something that felt like, and is, an immense privilege, that many people don't get to do- for lots of reasons, including that I am a walkie, and it's easier for me to get on busses and trains and planes than many of my friends and comrades who use adaptive devices that transportation is too ableist to easily accommodate. I have always felt, no matter what, I don't have my mom's life. I am lucky as hell. I got no reason to complain.
And there is truth to all of that. What is also true is all the days you work sick and in pain. All the invisibilized labour you do to lie down before and after, to take pain meds and stretch and carry traditional Chinese medicine teapills with you to ward off or mitigate the sick, to take care of the sick and pain that happens on the road and after the road. The inner and outer voices and archetypes common in performance culture, that say you are so lucky to do what you do, that the show must go on, that you power through illness, that canceling means you're a diva or 'unreliable' or weak, that to be open about illness means people will think twice about booking you and think you are no longer at the peak of your career. What is true for me, at 41, is realizing that the ways I was able to push myself, even as a chronically ill artist, to take redeyes and busses and long long travel days, in my 30s to shows and workshops and gigs, are less possible in my 40s.
Many folks I know increasingly talk a lot about sustainability, but I knew few people who actually have figured out how to do it all the way. That's not our fault- it's ableist capitalism's. We are all trying to survive the best we can, and there are few working artist workshops, fewer working disabled artist workshops, and a reality that it certainly feels like not everyone can make any kind of living as an artist. We are used to doing a lot on a little as a working-class, QT/POC artist model of our strengths. We don't have a model of touring that includes disability and illness, canceling and rescheduling, that seems like something other than a luxury, or even possible. This often comes from a place of being cash poor, but it's also true that artists with access to more money don't feel like it's possible to cancel or slow down either.
When Sins Invalid, the disability justice performance collective I am honored to perform with, rescheduled our big 2010 show after a collective member had 3 big health issues come up, bumping it from an original October 2010 date to April 2011, it was both unprecedented - something no one in performance worlds I know had seen done - and something we deliberately did as a disability justice collective committed to leaving no one behind and centering our bodies as they were. (You can see more about this decision here: http://sinsinvalid.org/blog/sins-invalid-performance-update and here: http://sinsinvalid.org/blog/sins-says-thanks ) I hope it's made other groups start to dream how to build in ideas of how to make performances happen where cancelling or rescheduling isn't an unforseen disaster or an impossibility, but something we can plan for.
I don't have a magic solution. But I know I am 41, a performer and writer, on my second pneumonia in two months, watching a lot of our beloved artists- Prince so much among them, but also Aiyyana Maracle, Mohawk Trans Elder writer and performance artist whose work I first encountered twenty years ago, who meant so much to me and so many folks in communities I am a part of, who just passed from liver cancer today, and many others - become ancestors in their 40s and 50s and 60s. And I am committed to figuring out together how we can remake performance culture's expectations and figure out our own disabled and chronically ill performance ideas that allow our bodyminds to thrive. I want us to live to get old.