“I felt scared and powerless the evening of Election Day 2016. The term ‘resistance’ became popular and commonplace in the news with the start of the current Administration and it got me thinking about the power of creation and words. Resistance and Hope is a small sample of the body of wisdom by disabled people who have been resisting oppression since time immemorial. Editing and publishing this anthology has been a gift to me and I hope it’ll be of value to readers.”
ALICE WONG is a disability activist, media maker, and consultant. She is the Founder and Director of the Disability Visibility Project® (DVP), a community partnership with StoryCorps and an online community dedicated to creating, sharing, and amplifying disability media and culture created in 2014. Alice is also a co-partner in three projects: DisabledWriters.com, a resource to help editors connect with disabled writers and journalists, #CripLit, a series of Twitter chats for disabled writers with novelist Nicola Griffith, and #CripTheVote, a nonpartisan online movement encouraging the political participation of disabled people. Alice is the Editor and Publisher of, Resistance and Hope: Essays by Disabled People, an anthology featuring 16 original essays by 17 disabled people on resistance in the age of Trump. You can find her on Twitter: @SFdirewolf
VIDA: What has it been like to be disabled in the literary world?
Cyree Jarelle Johnson: Being disabled in the literary world means that readers expect you to write about your story in a simplistic, rote way. Non-disabled readers want disability to be inspirational and quaint. It’s very condescending. I’ve also noticed a tendency towards wanting disability to be portrayed in very literal ways. They want to see the body fall apart in plain language, all at once. Then they want the story to turn around: the person recovers, they learn how to deal with disability, they date, they get married, they are empowered.
Non-disabled readers aren’t interested in reading a disabled picaresque. They need change, dynamism. As a multiply-disabled writer, I think there is also an assumption that people only have one disability at a time, and every piece of disability writing should emerge from that center. It’s not always possible for me to be just a writer with Lupus or just a writer on the Autism spectrum, I have to look at how one affects the other and how all of my disabilities change my personality, likes and dislikes, living situations, romantic partnerships, family life, employment status, and of course, my health.
It’s no secret that disabled writers have been snubbed by the AWP conference for a long time now, and that’s part of being a disabled writer too. Some of the solidarity required puts the “work” and publishing parts of writing in a compromising spot. Linking up with disability literary projects doesn’t always help either, because MANY are INCREDIBLY racist. That racism flies because there’s some idea that white disabled people have, writers included, that race is spoken about as an oppression and disability is not. I’ve seen white disabled people openly say and do super racist things because they believe it somehow righteous in the face of disability erasure.
VIDA: What would the literary world be like, if disabled writers were centered?
Cyree Jarelle Johnson: I think that disabled writers are sometimes featured, but a lot of times their disabilities are not an access of inquiry for scholars. I think this happens when Audre Lorde’s work on cancer is reduced to facile self-care, or when people talk about Plath’s suicide but don’t talk about her depression and mental illness as a disability—even though she was institutionalized and tortured with shock therapy.
If the disabilities of disabled writers were centered, disability would seem as normal as it really is. People wouldn’t feel like they were being respectful by omitting the fact that a certain author was disabled, they would get called out for that erasure. I also think that readings would be more interesting and comfortable—and maybe safer, sober, and more accessible.
VIDA: What has it been like to be disabled in the literary world?
Naomi Ortiz: The literary world, like art and activist spaces, assumes disabled writers are the exception rather than the rule. Writers’ retreats, awards, and literary events do not plan for access.
At the poetry slam, I am alone in a crowd, stuffed to one side.
Drunk 20-somethings use my shoulder like a handrail to climb over my legs, intent on moving forward.
I am craning my body to see around the butts of the standing forms,
hoping to catch a glimpse of light, movement, an expression to go with the words.
At least, this time, I got in the door.
In my wheelchair, at best I’m seen as someone to absorb, to witness. At worst, I take up a lot of space, I distract.
Neither are how I see myself.
Tucked in my bag are poems, words formed out of dry desert air.
But…that dense feeling I have in my chest, the one which tries to create solid strength out of sadness, lets me know there’s no way through.
No way through the crowd, the chairs, the steps, the courtyard dirt and rocks to the sign-up sheet or to the stage.
No chance to pitch my words into the room, for them to ride alongside the others, into people’s bodies, out into the night.
Yesterday, I was discussing my book, Sustaining Spirit: Self-Care for Social Justice, with a local organizer, and they asked how it’s been promoting it. I paused, my chest suddenly filled with the same dense feeling I get every time I roll into a writing or art space. I responded, “If you ask people in the literary community to describe my work, they’d say I’m passionate about disability access. Actually, I’m often just trying to get in the door, negotiate my worthiness to be there. They don’t see me as a poet, artist, or author, let alone passionate about these things.”
Advocating to just get in the door, I’m dealing with stressed out organizers who see me as the only disabled person interested in their event, and therefore the problem. If they accommodate me, it’s usually only once, before things go back the way they were.
In the literary world, as in most spaces, I can only be a disabled person. Writers programs geared towards people of color usually have no information about access and avoid inclusion, since their programs tend to be smaller, less funded and in more urban/older inaccessible spaces. As a Disabled, Mestiza (Latina/Indigenous/White), raised in Latinx culture, living in the US/Mexico borderlands, the literary world seems only available in inaccessible locations with ableist* expectations. Advocating for access equals push back, and constant push back is a push out of community.
VIDA: What would the literary world be like, if disabled writers were centered??
Naomi Ortiz: If disabled people were centered in literary community, then this would mean there’s an expectation of centering difference. Creativity wouldn’t just be applied to the page but to our lives, environments, and communities. Disabled people are blind, neurodiverse, intellectually disabled, Deaf, folks with psychiatric, physical disabilities and/or other disabilities. Disabled people are part of my culture, your culture.
Daydreaming of how things could be different… I decide to apply for a people of color writing fellowship in NYC. In my daydream, their website details the access of programs, lists accessible lodging, and transportation options. They have people on staff to support folks through the application process and logistics. All I have to do is focus on writing the best application I can.
In my daydream, I imagine that I’ve been attending workshops for a couple of weeks. I’ve been soaking in the gray clouds and the denseness of the buildings, so different than the open skies and desert I’m used to. Tonight, instead of thorny plants, I pick my way through the people as I enter easily over a ramp into a warehouse. The stage converted to additional seating and standing room for the large crowd expected. I go back outside to use the rented accessible porta-potty and go back in to get ready to share my fruits of the program. Adjustable stage mics set, three volunteers rove through the seating area collecting names for the open-mic portion. The music from the DJ lowers, it’s time to begin. I’m up first, and I pause looking out over the diverse crowd filled with writers, avid readers, and potential agents, and pitch my words to ride into the room. I love this dream.
* A pervasive system of discrimination and exclusion that oppresses people with disabilities. Ableism operates on an individual, cultural, and societal level. Deeply held beliefs about productivity, attractiveness, and the value of human life, combined with a basic fear of vulnerability, result in an environment that is hostile to people whose abilities fall outside the scope of what is defined as normal or socially acceptable. (Partially adapted by Melinda Haus and AndreAs Neumann Mascis and partially adapted by unknown.)
CYREE JARELLE JOHNSON is a writer and librarian from Piscataway, New Jersey. Their first book of poetry SLINGSHOT will be published by Nightboat Books in 2019. Their work has appeared in The New York Times, Vice, Rewire News, Boston Review, The Feminist Wire, and HuffPost. They are a founding member of The Harriet Tubman Collective and The Deaf Poets Society. Find them on the internet at @cyreejarelle or at www.cyreejarellejohnson.com.
NAOMI ORTIZ is a facilitator, writer, poet, and visual artist. Caring about the world should not burn us out. Naomi’s book, Sustaining Spirit: Self Care for Social Justice and her chapter in the anthology, Resistance and Hope: Essays by Disabled People, explores with readers how self-care can work in everyday life, by examining relationships between ourselves, community, and place. She is a Disabled, Mestiza (Latina/ Indigenous/ White), raised in Latinx culture, living in the U.S./Mexico borderlands.