Four years ago, disability rights activist and writer, Alice Wong, like many of her peers, was gearing up for the 25th anniversary of the Americans with Disabilities Act, passed in 1990. “I wasn’t sure what I could do to contribute and mark the occasion,” she says. Then, inspiration struck and she decided to create what she thought would be a one-year oral history project to give ADA beneficiaries a way to weigh in on the landmark legislation.
She called it the Disability Visibility Project.
Fast-forward to today, and a community partnership between the Disability Visibility Project and StoryCorps—a program Wong had long admired—has resulted in the collection of more than 140 testimonies, many of them now archived in the Library of Congress.
Wong is clearly proud of this. At the same time, she wants to make sure I understand that the Disability Visibility Project has moved from its original mission of story collection to become a vibrant online community that is “dedicated to creating, sharing, and amplifying disability media and culture,” through Twitter chats, a Facebook group, a blog, and a podcast.
The Disability Visibility Project’s latest effort, an e-book edited by Wong and called Resistance and Hope, includes sixteen essays, many of them by writers of color, among them Mari Kurisato, Noemi Martinez, Talila A, Lewis, Mia Mingus, Maysoon Zayid, Aleksei Valentin, and Naomi Ortiz. Diverse in theme as well as writing style, the anthology tackles topics including self-care, movement building, intersectionality, the ups-and-downs of coalition work, the uses of anger, and maintaining optimism in Trumpian times.
“The anthology is for everyone,” Wong tells me, “but the underlying intention is to center stories for us, by us. Unfortunately, this is still rare in publishing.” What’s more, this is a collection that defies oversimplification and stereotypes.
“Disability is incredibly diverse and non-binary,” Wong says. “People are in a constant state of evolution on how they see themselves. There are many people who do not use the word disability and would never identify as disabled and that’s okay. The lived experience is much more nuanced and complex.”
Resistance and Hope, Wong concedes, does not represent the breadth of activism among disabled people. Instead, it zooms in on what she calls “the experience and wisdom” of a small group of progressives and provides a showcase for folks who are often overlooked by social justice movements. As for making the collection available only as an e-book, Wong says that the decision was purely pragmatic: Keeping the cost low and providing easy access.
“Disability is incredibly diverse and non-binary…People are in a constant state of evolution on how they see themselves.”
But while she’s eager to promote the book, she and the Disability Visibility Project have other items on their to-do list—like tracking the ongoing attempts to weaken the Americans with Disabilities Act and gut safety net programs like Medicaid, Medicare, and the Supplemental Nutrition Assistance Program (SNAP), commonly called Food Stamps.
Wong says “constant threats to the Affordable Care Act by the current Congress and cuts to programs like SNAP will impact millions of people, many of them children, older adults, and the disabled.”
At the same time, Wong also emphasizes the role that disabled activists have played in defending existing programs and pushing for expanded protections. She says intersectionality has been essential in connecting issues that had previously seemed disparate and had kept activists isolated from one another.
“Just this summer,” she says, “I co-hosted a #CriptheVote chat with the National Coalition for Latinx with Disabilities on immigration and family separation.” Similarly, a Twitter chat, #DisabilitySolidarity, on the 2018 prison strike and its impact on deaf and disabled people provoked a lively exchange that garnered support for striking inmates and for at least three deaf people who were deported from a federal facility in Miami without the benefit of interpreters or assistive technology.
Despite these alliances, Wong and most of the contributors to Resistance and Hope believe progressives can do more to promote inclusivity. “Every movement must be accessible,” she says. “We are part of every community and when your activism is inaccessible, it sends the message that we are not wanted and don’t matter. Activism should be more flexible, and all kinds of activism should be valued, including actions taken from our laptops or in our homes. There’s more to activism than attending a rally, wearing a pussy hat, or making phone calls.”
Over the past year, the Disability Visibility Project has partnered with #CripLit to create a series of Twitter chats for disabled writers to discuss the ways disabilities are portrayed in literature and in publishing generally; DVP activists have also worked with disabledwriters.com, an online database that connects editors and publishers with disabled writers and story sources.
“To piece together a ‘me too’ might require more of me than there is to go around.”
In addition, the group has paired with Rooted in Rights to collect #MeToo experiences. This has led to a series of blog posts and a video about the sexual harassment of disabled people. Contributor Nina Ferrar explains that her disability makes coming forward extremely difficult. “My ‘me too’ comes out garbled, if at all,” she wrote, “[and I’m] usually too busy fighting for survival to speak out against the predators that have been harassing me since I was a girl. To piece together a ‘me too’ might require more of me than there is to go around.”
Finding a voice to express rage is key and Wong sees Resistance and Hope as another tool in the growing arsenal of fight-back tools available to the disabled. Furthermore, she hopes the anthology will be used to educate those who may never have thought about what it means to have a disability or have to deal with sexual harassment or abuse as a disabled person.
The idea for the book, she says, began to take shape on Election Day 2016 when, like many of us, she watched in disbelief as the results trickled in. “I wondered what I could do to fight back and create something of value for all of us,” she recalls. ”I realized we weren’t entering into a new moment; every moment is cyclical and tied to living, resisting, dying, and rebirth. We are all linked to one another for survival.”