February 14, 2017

On Advocacy & Disability in the Creative Writing Community



I don't usually bother checking the stats for this blog, but I was curious about my last post, which was shared among the community of those who attended the recent AWP Conference, predominantly writers and teachers of creative writing. 3,500+ views! That's a lot of views. If you used it to guide your visit, I hope it was helpful. I hope you went to a panel or two. I hope the Metro got you where you needed to go. I hope you ate well in D.C. 


If you were at the Walter E. Washington Convention Center on Saturday afternoon, you may have witnessed a protest form of people linked arm in arm, chanting. This was inspiring for many. That said, consider how anxiety-inducing that kind of formation might be for someone with mobility issues. Consider the irony for those in the "Writing With and About Dis/Ability, Dis/Order, and Dis/Ease" who could no longer hear our own dialogue: a group whose lives are under threat via the current administration. Consider that at 6:30 PM, there were folks in the hotel bar instead of in front of the White House--not because they did not sympathize with the goals of the Split This Rock candlelight vigil, not because their voices shouldn't be counted, but because that kind of physical activity is not realistic or safe. Get real about the fact that by 10 PM, many in that same group would find the hotel bar a nightmarish, jostling space in which boundaries and balance are not protected.  


For many, this was a successful and vibrant conference, and a gathering infused by heightened political awareness and real urgency about the state of American affairs today. For all who brought their voices and energy, thank you. For all the planning aspects that AWP as an organization got right--and there were many--thank you. 


But if you came and went from the AWP Conference thinking it was nothing but a literary lovefest, you missed a substantive conversation about access, disability, and inclusion. I want to revisit that conversation here because it is not too late to make your feelings about these concerns heard. Many of you have a survey sitting in your email inbox, asking for feedback about the conference experience. Don't just reply on your own behalf. Advocate. 


What if all 3,500+ people who visited this blog for my last post were to advocate on behalf of writers with disability, and writers within the D/deaf community?


Let's keep it relatively simple--a few trees in the larger forest. 


-There were 20+ panels this year with themes relevant to disability! The "Advanced Search" option for the schedule should allow one to seek these out. 





-An "Accessibility Desk" that requires physical access in order to seek assistance is...ironic. The Accessibility Desk should have an associated hotline for phone queries from conference attendees, with either a TTY or real-time text messaging option for those who are D/deaf. 


-AWP Conference events explicitly affiliated with disability (or upon request) should be assigned rooms with accessible performance spaces--ramps to a stage, or no stage at all--and the doors to such rooms have push buttons, or assigned attendants who will manually open / close doors for conference-goers for the duration of the event. Ideally this would be the case for ALL events, but I'll take what I can get. (Photo of stairs leading to the stage in the room for Friday's Disabled & D/deaf Writer's Caucus, courtesy of Jennifer Marie Bartlett. The group circled around on the floor instead.)


And I want to say here: it'd be unfair to put blame on the current events coordinator for failure to serve all constituencies and needs simultaneously. One person cannot be everywhere. AWP needs to hire a professionally trained coordinator responsive to ADA compliance issues, or sponsor that training in-house, and that person should then be compensated for time spent responding specifically to these issues. 


-AWP has done quite a bit to expand the scope of their "Accessibility Services" in recent years, and that should be applauded. But the requirement that conference participants seeking ASL translation, Cued Speech Transliteration, or CART services file their requests, specific to the panel, a month in advance is ableist. Any AWP Conference-goer can attest that spontaneity and freedom to change plans are hallmarks of the experience. Aware of this issue and hoping to circumvent, at least one set of panel organizers requested translation services on principle--based on the event's stated theme, anticipating audience attendance, wanting to welcome all. This request was met with resistance. 


-The $50 replacement fee for badges is poised to intimidate and disenfranchise those who, because of neurodivergence issues, tend to lose things. Quickly doubling back to grab a forgotten badge may not be realistic for someone with mobility issues. There needs to be stated accommodations for those with complicating medical conditions when it comes to badge replacement. 


-Caucus meetings need to be scheduled in a manner sensitive to intersectionality, and should not "compete" by being given the same time slot. (Thanks to Metta S├íma for orienting me to the importance of this.)


Did you notice this, when you looked at the Conference Schedule grid?








...regardless of intent, stacking caucuses in the schedule undermines people's efforts to advocate in regards to multiple identity issues. They are forced to choose. 


Fierce and talented people such as Quintan Ana Wikswo have written about this. Fierce and talented people such as Stephen Kuusisto have written about this.


Make no mistake, there are people within the structure of AWP, on the staff and on the board, who prioritize these issues. There are others who do not. The only way change will happen is if those who wish to make policy changes, and allocate the budget to implement them, can point to a significant constituency that shares these concerns. Those lobbying can't just be those directly impacted. We need allies. 


I spent my first decade in the writing community opting out of open affiliation with disability. I compensated for my needs and refused to ask for help or accommodation; I hid reactions when in literary spaces. I say this with embarrassment but also empathy for my younger self, because I believed that to incorporate the realities of a medicalized body made me less attractive as a writer. That is a stance conditioned and affirmed, over and over, by our society. This is also a privilege of my having a disability that, though chronic, can be managed largely through preemptive action and only periodically manifests itself.


The literary world has a long way to go in incorporating and honoring writers with disability. Those creating syllables, anthologies, and reading series with an eye towards "diversity" rarely factor representing writers with disability the same way they might actively seek out representation of queer voices or voices or color. Submittable, other online submission formats, and websites of journals? Often not accessible for those who have visual impairment. Even when articles and books written by those with disability and chronic illness receive standalone attention, there is a tendency to frame out a fight narrative, featuring a traditional plot arc of conflict, catharsis, and resolution--and oooh, bonus if you're cured. This is inspiration porn.


Fierce and talented people such as Karrie Higgins have written about this.

Fierce and talented people such as Alaina Leary have written about this. 
Fierce and talented people such as Tipsy Tullivan make videos about this and good glory, if you have not seen these you are missing out. 

I revisited this decision to pass as living without disability when I published a memoir and cultural history of food allergies in 2011. Because of amazing and forthright readers, I found myself in conversation with people experiencing anxiety, exclusion, and outright discrimination because of their own dietary restrictions. To not speak up, as someone gifted with a book contract in tandem with my own pervasive and life-changing dietary restrictions, would be pretty damn hypocritical. 


Here's the thing about speaking up: it's terrifying. And you will get it wrong. 


You. Will. Get. It. Wrong. You will need to apologize, occasionally. You will need to listen, always. You will need to accept that your ego (used to being articulate and accurate and elegant, as so many writers pride themselves on being) is less important than the opportunity to learn.


I say this as someone who often gets it wrong. Who once met a favorite poet, one with quadriplegia, and promptly attempted a handshake. Who sometimes forgets the importance of using the microphone, even if you can project your voice. Who prefers to speak extemporaneously and sometimes balks at preparing scripted handouts. Who had to take a step back and realize her classroom practice had, for years, advantaged those who speak quickly and clearly. Who works with a nonprofit in D.C. that she loves, but has stairs instead of ramps and no operating fund for translation services. Who in the past used the metaphors of "sight" and "blindness" unmindfully, without respect to those whose literal experiences are being appropriated. 


I am speaking up not as a role model, but as someone who can do better. I figure it out day to day. I screw up day to day, but I'm trying.


I'm astonished by the number of writers in our community who prefer to avoid accessibility issues entirely, versus risking getting it wrong. Are you clear on what you're pushing to the margins? People. Fellow writers. Voices you need to hear. Voices that--guess what--might someday include your own. Living with disability is something that can happen to anyone, at any time. 


For two AWP events, I made a request in writing to my fellow panelists: "Please bring a few extra copies of any poems you intend to read printed in large font (~14 point), double-spaced, on paper you can give away to an audience member. This gesture is endorsed by the Disabled & D/Deaf Writers Caucus as a way of welcoming and including those with hearing difficulty, who may struggle to follow your reading in real time in a noisy space." I wasn't asking for anything extraordinary--AWP (again, to their credit) already has this embedded in their guidelines for presentations.





One person complied. (Nicky Beer! She rocks.) We made an announcement early on, offering handouts for those with need. Every available copy I had was claimed and I wished I'd had more. The demand is real. The opportunity to include is real. 


This year's AWP Survey gives you thirteen options to describe your gender, and seven options to describe your race/ethnicity.









































...all those options, all that awareness, yet the AWP Survey does not have a checkbox under "Attendee Demographics" inviting you to self-identify as a writer living with disability. Much less a break-out for sensory impairment, mobility impairment, neurodivergence, and other categories--all of which would help them protect the specific needs of conference-goers. The only reference to disability is the opportunity to rate the "Accessibility Desk" as a "most helpful" or "least helpful" factor in one's conference experience. That's a funny phrasing, because checking "least helpful" can be interpreted as least relevant to my needs. When in reality, checking "least helpful" might mean biggest letdown.


Do I want to celebrate the things that we, as a literary community, do well? Of course. I love writers. I bring a deep, abiding, and celebratory spirit to moving through this world as a writer. That said: we can do better. We have to. 

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