Hello, Lovelies, How the hell are you?
Day 985,622-ish of lockdown and it feels like we’ve reached the beet dyeing stage of things, no? Grim colonial settlers slogging away at candle and butter making?
Perhaps you’re tired of having to sound like an enlightened Montessori teacher around your kids? All that breathy perkiness. Or you’ve started referring to your excessively cheery virtual yoga class as “fucking yoga”? Maybe you’re more inventive and your household is now responding to each other entirely in Hamilton lyrics?
I told you all about having my social hacked last month… well, it gets even better! This past week I received a notice from the government. According to their records, I’m both deceased and incarcerated. Not one or the other, but BOTH and would I mind please checking the boxes on the forms to indicate either yes or no if this is correct? Pray tell, from whence would I be doing said box-checking?
I guffawed so loudly in the yard, the neighbors must have thought I was having a stroke. I couldn’t help thinking of the line from Crip Camp: “When you’re disabled, somebody always wants you dead.” This sentiment has never felt more true than with COVID-19. Why should we save a person who spends half her life on the ground having seizures when we might possibly save someone more functional? Someone who adds more value, as the corporate suity-types often put it? It’s some scary ICUgenics to be sure. The whole thing made me want to immediately design a “Say No to Ayn Rand!” t-shirt.
The best alternative I could find was this little gem from The Second Shelf in London:
It turns out it’s terribly hard to prove you’re alive during a pandemic. There’s really no one you can call. Everything is shut—from county clerks’ offices to notaries to banks with actual humans in them. When I tell people what’s happened, this slight glitch in the matrix, they’re absolutely enchanted and envious at my newfound status. “Ooh, you could completely disappear!” they say. Then they start naming countries we can no longer go to and joking about never again having to pay taxes.
The thing is… I’ve actually fought very hard to be here and alive these past ten years. Not because death is such a bummer or because I fear it, but more because being alive is well… entertaining? I’m constantly amazed by the absurdity of it all, and I’m quite keen to be included… to work, pay taxes, follow the ridiculous rules, and love people. Funny how abled people still make this hard for us. (Sighs resignedly).
When I was first writing my book about coming out about my condition, I was asking myself, “Who will I be now… with epilepsy? How will I be?” Well, I’m definitely going to be funny was the first answer. And certainly not broken was the second. (Though I do have one super-judgy friend who’s constantly insisting I’m broken, even though he himself has loads of temper tantrums, extramarital affairs, and also undertakes all kinds of ethically dubious adventures. At a certain point, you just have to put people like this in the “not for me” pile as life’s simply too short.) In any case, I find a great deal of power in disability… and zero power in the kind of erasure others around me would seem to enjoy.
I suppose I could skulk around as a bureaucratically dead girl doing mildly subversive things… upending people’s assumptions about what a person with epilepsy can actually do, but life is so much more interesting when you’re not masking for other people’s benefit, i.e., “Oh, here, darling… come let me make you feel better about my overly-electric little brain that’s not in any way my fault… Oh? Wait, I’m supposed to be ashamed of it? Ahh…” Yeah, I don’t think so.
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A friend of mine has five books coming out next year. It seems insane to me, but now looking at my own crazy board of projects, most shut down as I work to remap the next two years of life, I think I will attempt the same. Some projects will need to switch continents or be rejiggered as more “international” in order to get made. Others can exist happily as books if I just double down and commit. I try to work from 8am to 2pm daily. I shut myself away to ignore everyone and everything, but man… the world is merciless in its ability to distract.
What I am loving seeing out in the world is how the different platforms for performance are adapting, like this ZOOM-based play What Do We Need to Talk About? from Richard Nelson and The Public Theater… it’s completely poignant and subtle. Nevermind that it’s on bloody ZOOM, the writing is decidedly alive, and the actors ever more connected than if we were all crammed into a smelly little black box theater… it’s pieces like this that let me know… we can still work. That somehow, we’ll still work.
Work as simple and GREAT as this is reason enough to check the damn box on the dumb form that YES, in fact… you are still very much alive.
Stay rad and stay safe, lovelies. xoxo – gg