Today, I am going to talk about something I don’t talk about publicly in great detail most of the time: being a writer with multiple invisible disabilities and the alienation, exclusion, and profound loneliness I feel because of it. I don’t like to air my grievances because I generally do not trust able-bodied people with this information, not even many of my closest friends. If that hurts anyone’s feelings, I am sorrynotsorry. It is not meant as a criticism or attack on anyone. It comes from a lifetime of feeling left out and misunderstood. It is why I understand the righteous anger of others who experience discrimination. I know what it feels like when people gaslight you. It feels like shit. It feels like you landed on some cold and alien planet that doesn’t want to share its air.
My experiences as a person with epilepsy, bipolar, PTSD, and Chiari are usually met with neuro-typical ‘splaining. My experiences as someone with hearing impairment are usually met with patronizing “advice” to get a cheap hearing aid at Costco. I have learned it is best to keep my mouth shut & my head down and not make “problems” for everyone else. It’s not even worth it to ask for accommodations anymore (read my experiences with that quagmire below), because the kinds of accommodations I need don’t make sense to people, and so they either shame me for asking or neurotypical ‘splain why I don’t really need them. And this in the context of a supposedly “progressive” community of writers, artists, and academics.
I live and work in an isolation bubble, doing the best I can with what I’ve got. Somehow, I have managed to win some awards and wind up with a notable in Best American Essays 2014 along the way. So I am not some dilettante who’s just bitter about lit-mag rejections. I am out there doing the work and getting published. So do not even think of coming at me with some “sour grapes” accusations. I ain’t having it.
Click this link to one of my pieces (TW: sexual abuse). Go read that comment from “Coco.” It’s pretty typical of the bullshit I put up with because my brain is not wired like most people’s. According to the anonymous Ms. Coco, I should be writing fiction. FUCK THAT. I will write fiction if I WANT to write fiction. When that comment popped up on the site, I wondered why it was allowed there at all. Would a similarly overt racist comment have been allowed? I hope not. So why an ableist one? (And psst … I already know I should stay out of the comments.)
And if you want to tell me that my autobiographical experiences aren’t “real,” well, allow me to expand your vocabulary:
Then there was
And the time I was teaching college composition online, and the department switched to a new scheduling system that would have forced me to conduct late-night live seminars, and late nights = seizure trigger. I disclosed my disability to my boss for the first time, and I got lectured about not disclosing until I could “get something out of it” and told to “plea” with my colleagues for a daytime slot. I schooled the motherfucker in ADA. Instead of accommodating me and moving on, he accommodated me and made my work life a living hell until I resigned.
When I prepared to file an EEOC complaint, I was STRONGLY ADVISED it would show up on background checks FOREVER, and I would never work again, so I didn’t file it. Nice little system there, huh? Oh, and guess what? I haven’t had much opportunity to work again, anyway. I taught at another school after that and got laid off for daring to get sick from yet another supposedly “ADA-covered condition.”
Or all the times I’ve been labeled “difficult” or “silly” for NEEDING a hotel within walking distance of AWP (or whatever event) because I cannot drive and DO NOT ride public transit in an unfamiliar city because a seizure in that context could get me dragged into a police station or worse. Yep. I’ve been interrogated by cops when I was post-ictal (wanna guess how police officers handle someone in that state, not realizing they CAN’T answer?) Not arrested, thank goodness, but I know epileptics who have been … and I know of some who have died as a result (though the case in that link clearly intersects with race, too, but hey, disability doesn’t exist in a vacuum; we are people).
So when you tell me I am being “silly,” you can fuck off. Fuck. Right. Off.
Or when lit mags say they are looking for diversity and don’t solicit submissions from people with disabilities.
All those times I wanted to attend a writing retreat, but it couldn’t accommodate my epilepsy. Maybe it only had bathtubs, and bathtubs = drowning if I have a seizure. Maybe it boasted mandatory events at times that would trigger seizures. Maybe it required me to transport myself to a highly secluded area without any accommodation for the fact that I cannot drive due to my seizures. Oh, this happens all the time. All the time.
And even if I could go, I don’t trust able people to respect my wishes or my boundaries once I am there. I’ve been down that road too many times, burned too many times. What if I have a seizure and “ruin” it for everyone or they make jokes like professors in my MFA program did? What if they call an ambulance and get me in thousands of dollars debt for an ER visit, even though they promised not to because it isn’t necessary & I gave them instructions in case of seizure? Want to guess how much money I have paid to hospitals for unnecessary ER visits?
And then I don’t get retreats and residencies on my CV, and people say: You’re not trying.
Or when writers post about their book tours, and I think, shit, how the fuck am I going to do that if I ever finally publish this book burning inside me? Stuff they don’t even see as an issue, really. Drive (drive! I’ve never done it!) up to some readings in a nearby town or suburb or whatever. Hop on a plane. Stay out late at literary events and parties. No big deal.
The times I have walked into lecture halls and FROZEN from anxiety because no matter where I sit, I am a problem: If I sit up front and have a seizure, I disrupt the whole thing and ruin it; If I sit in the back, I cannot hear.
Or how about June 2003: I am seated at a coffee shop window in Marina Del Rey, California, scoping out my MFA classmates as they arrive at the Marriott for “our” graduation. I make sure they are all inside before sneaking back to my room, retrieving my suitcase, and getting the hell out of dodge. I don’t want to ruin everything by having a seizure, so I miss my own graduation.
Yep. I didn’t go to my own fucking MFA graduation because I DID NOT FEEL WELCOME.
But I keep my mouth shut most of the time. It’s better that way. Trust me.
So why am I speaking up now?
On Friday, after I learned that AWP rejected every single disability panel proposal for the 2016 conference in Los Angeles, it hit me like a sucker punch. For the first time ever, I had been invited to an AWP panel, and it happened to be about invisible disabilities. Even though I have never been able to attend before thanks to the logistical and accommodations nightmares my epilepsy and other disabilities create, I felt the incredible lightness of hope. This particular year, my husband might have even been able to drive us there and go with me, which infinitely increases my sense of safety. (He’s a writer, too.) It felt like a confluence. Like things were coming together. Being invited made me feel part of something for the first time in a VERY long time.
And then it got rejected.
OK, that’s fine. Rejection is part of the game. But it wasn’t just my panel that got rejected. Every single disability panel got a
Every single one.
Sure, they gave us a “disability caucus,” which translates to a “networking event” where we hang out with our own kind and don’t make problems for all the able people … but not a panel. NOT ONE. We were not worthy of even ONE panel. I have to think they designed it this way. They WANT us isolated. They WANT us contained. They WANT us to keep our problems to ourselves. Otherwise, they might have to actually change some things. Gasp.
This setup reproduces the exact same conditions in which we already work and live. How convenient for everyone.
A rep from AWP “explained” the decision this way:
But there were disability panel proposals. Again, I was part of one. I have also talked to other writers on Twitter whose disability panels were rejected:
— Katie Guest Pryal (@krgpryal) August 1, 2015
(Image is screenshot of AWP panel proposal for “writing ethically about psychiatric disability.”)
The excuse smacks of lit mag editors who claim, when charged with sexism, that they simply don’t get submissions from women. We all know it’s total bullshit. Come on.
And, anyway, true or not, the excuse wreaks of ableism:
1. IF AWP isn’t getting many proposals from writers with disabilities, they need to find out WHY. Did they ever stop to think that writers with disabilities feel unwelcome? That maybe it’s really fucking hard to get to these events with obstacles like under- and un-employment, astronomical medical costs, logistical problems like transportation, chronic pain, safety risks, medications, etc., and a proven history at AWP of not accommodating in meaningful ways? (Ask around. I am not going to do the work for you.) Did AWP ever think that maybe, just maybe, the conference is not very accessible, and THAT is why they didn’t get many proposals? Why no outreach?
2. Look at the winning panels, and you can see right through this little numbers game (lie). There’s a panel on teaching the elderly at the Y and elder care facilities. Actually, that’s really cool. I love it. But … um, am I supposed to believe that AWP got a ZILLION panel proposals on teaching the elderly? Because by AWP’s own logic, that’s the ONLY way you will get a panel accepted. Remember, the WHOLE reason they didn’t accept a disability panel is because … they didn’t get that many. Hm. I’m having a REALLY hard time believing they were INUNDATED with proposals on teaching the elderly (an admittedly cool panel, but that’s not my point).
3.If AWP is “itching” for disability proposals, why did they reject every last one? Actions speak louder than false declarations of ally-ship.
4. Minority groups deserve representation, too.
5. AWP is NOT “only as diverse as its proposals.” Funny, even though my panel got rejected, I am still here and still disabled and still a writer and still a member of AWP.
They think they can pull a goddamned David Copperfield and vanish the disability problem just by rejecting our panels?
Publicity photo of David Copperfield from the television special The Magic of ABC Starring David Copperfield.
Imagine if an MFA program rejected every single applicant with a disability on the basis that only a “few” applied. OUTRAGE! ADA violation! And yet, AWP rejects every single disability panel with impunity. How is this acceptable for an organization that purports to represent writers and writing programs?
And then there is this:
Wait, AWP wants us to volunteer as mentors, but they don’t think we are worthy of a panel?
Are they kidding me with this hypocritical, phoney baloney “we care” nonsense?
I have read some comments alleging that disability panels lack “broad appeal.” Oh, really? Re-read that proposal I posted up there about psychiatric disabilities. Tell me it’s a yawner with a straight face. And why is it that disability panels must appeal to everyone? Other demographics don’t seem to be burdened with that requirement.
There’s a panel on mother writers. I’m not a mother and don’t want to be a mother, but it would be ludicrous (and downright shitty) for me to say that mothers shouldn’t have a panel. OF COURSE mothers should have a panel. They face a whole host of challenges I could never understand, and it’s an important issue. (Psst, and I BETCHA there are even some mothers who have disabilities! Yep. Contrary to popular belief, we people with disabilities can and do reproduce.)
Every year, my friends peruse the panel descriptions and complain about the tough choices they will be forced to make. Must be nice, I think, having that problem. I am so far removed from that luxury, trying to figure out some way to get this epileptic body there to participate meaningfully (and SAFELY). Honestly, the AWP might as well take place on Pluto.
Well, AWP did do me one solid: I know one conference I don’t have to work out logistics to attend. I know where I’m not welcome.
I got 99 problems, but AWP ain’t 1.
UPDATE: I’m not the only person who is angry at AWP for its treatment of members with disabilities: http://stephenkuusisto.com/2015/08/01/the-awp-and-disability-inclusion/
(Note: Other writers with disabilities may have vastly different opinions and experiences. Please respect that diversity if you jump into the conversation. Also, this post in NO WAY is an exhaustive exploration of my experiences or issues with accommodations.)