“Nothing About Us Without Us.”
By John Loeppky
Alice Wong was at a StoryCorps event in 2014 when she had a realization. She had planned to continue working in academia, but saw a gap in the media landscape — and a way to fill it.
“I thought I could form a community partnership and encourage disabled people to tell their stories about the everyday experience of being disabled in America as a way to capture disability history in the present,” she says.
Influenced by the discussions happening in the disability community at the time around the 25th anniversary of the Americans with Disabilities Act (ADA), a hardfought flagship piece of legislation for American disabled people, she founded the Disability Visibility Project (DVP). Working with StoryCorps, an American non-profit dedicated to recording oral histories, it has since turned into a long-running podcast, a site with guest hosts, a recording app, and two book anthologies — including the newly-released Disability Visibility: First-Person Stories from the Twenty-First Century, an anthology of renowned disabled writers which is currently ranked number seven in Amazon’s literary essays category and number one in their disability studies section. In June, the podcast reached over 7,000 downloads and the website had over 54,000 views.
There is an often repeated refrain in the disabled community: Nothing About Us Without Us. It’s an ethos that is rarely reflected in leadership positions at legacy media organizations. With physical, educational, and financial barriers to access the media industry, disabled people are more likely to see an op-ed labelling us burdens worth discarding or a headline announcing us as inspirational for merely existing than we are the authentic representation we crave as an audience.
But because of the work of disabled independent media creators, and a plethora of freelancers from a variety of backgrounds, this is beginning to shift.
One of the projects that has been financially supported by the DVP is Disabled Writers, a database co-founded by Wong, s.e. smith, and Vilissa Thompson, fellow disabled writer and founder of Ramp Your Voice. The database connects media outlets with disabled writers and writers with disabled sources. Disabled Writers uses the same model as the database Editors of Color, highlighting and facilitating diversity in media via submissions of profiles that are then posted publicly. Disabled Writers supports diversity in media by removing the excuse often given in media discourse that finding disabled talent is too hard.
The project started because of frustration with a lack of disability representation in the media, according to smith, particularly around coverage of the enactment of the Affordable Care Act and disabled people’s protests against its attempted dismantlement by the GOP.
Early in their career, they were often met with offers of exposure, a continuing concern for those from diverse backgrounds looking to work in media.
“Certainly, especially early in my career, I got a lot of like, ‘Well, you should be happy for whatever you can get,’ or, ‘Well, we just want to have diverse representation on our site.’”
According to smith there are around 150 active profiles on Disabled Writers.
One of those active profiles is Ace Tilton Ratcliff. They have published bylines with outlets such as Huffington Post and Bustle. Their advice as a business owner and disabled artist to disabled people who are looking to start their own business is to be persistent.
“I would say you are going to have to be one of the loudest people in the room. Because of the way everything is set up, your voice is frequently going to be left on read. And so, you kind of have to be a pain in the ass. You have to be the person who is yelling and saying, ‘No, we have to do things differently.”
Ratcliff says the key is for accessibility and inclusivity to be part of “structural design,” what smith calls the need to “build accessibility from day one.”
Wong increased the audience of the Disability Voices Project by making it a platform for all kinds of people: accepting guest posts from various creators, including A.H Reaume, Laura Dorwart, Zipporah Arielle, and making a podcast with titans of the disability space like blogger Carly Findlay and comedian Maysoon Zayid.
Wong has also heightened her own profile. She’s an award-winning writer and editor of two anthologies. Outside of her work with the DVP, Wong was a consultant on the Netflix film Crip Camp, an unapologetic look at the history of the disability rights movement from the vantage point of those who were there from its modern American beginnings.
Wong has a list of questions new independent media creators should be thinking about when they are starting an outlet.
“Seriously ask yourself what your capacity is and what your timeline looks like in the next year, five years, and beyond,” she says. “How long do you think you want to do this? Ask yourself if your idea is unique and needed. Is someone else doing this better? Are you the right person to be working in this area? Who can you support or collaborate with instead of starting something from scratch?”
In the news
And one more thing…
From Popula, a necessary reminder that being a young journalist in the middle of a pandemic is no easy thing.
“All of our documentaries are like time capsules, reminders of what it was like for all of us to be sequestered and separated. Maybe in the future, people can use them to learn about this surreal moment in history. The country’s unending traumas—the coronavirus and racism and police brutality and every other problem—aren’t going anywhere. But we can still try to communicate with people who can teach us about their lives, despite a system that seems to want to see us fail.”