Wong is a Staff Research Associate at the Department of Social and Behavioral Sciences at University of California, San Francisco and has authored and completed research for the Community Living Policy Center, a center for rehabilitation research and training funded by the National Institute on Disability, Independent Living, and Rehabilitation Research. She has created the Disability Visibility Project with the goal of amplifying the voices of those with disabilities, voices who often get shouted down by the media. The site is also a partner with StoryCorps, a non-profit organization that allows people to record their stories and share with others, as well as provide a way to create an oral history of families and communities. I was excited to interview Wong and get her perspective. In this email interview, you’ll read her thoughts on how disability is treated in the media, what non-disabled people can be better allies to their friends and family members with disabilities, and how you can contribute to the Disability Visibility Project.
What led you to start the Disability Visibility Project?
Alice Wong: I listen to NPR a lot and every Friday on Morning Edition they broadcast a short piece from StoryCorps. I also love their animated stories from their website and appreciated the wide diversity of stories. Later on I discovered that San Francisco had a StoryCorps recording booth and attended one of their live events and that’s when I first came up with the DVP.
StoryCorps is a fascinating initiative to the partnered up with. How did the Disability Visibility Project and StoryCorps join forces?
At the StoryCorps event I attended in SF around 2013, they mentioned how they have various community partnerships and I immediately thought there should be a disability-specific partnership since the SF Bay Area has large and vibrant disability community. I reached out to them and after a series of conversations on how a partnership would work and what’s involved, it was relatively easy. What’s great about StoryCorps is they have the infrastructure in place: the people, the equipment, and the relationship with the Library of Congress to archive these oral histories. Our goal as a community partnership is to make sure our people are represented.
There are some inherent problems in how the media portrays disability. What are some of the biggest problems you see in the media when it comes to reporting on disability or portraying disability in entertainment?
So many problems! I’ll focus on one: media (both creators of popular culture and professions such as journalism) is overwhelmingly non-disabled. When you have non-disabled people pitching, writing and editing stories about disabled, you’re missing the lived experience that’s intimately tied to accurate depictions of disability. And it’s more than a matter of hiring more disabled people in media–there’s also a need for a culture shift to examine how ableism is entrenched in the media. I spoke about this issue here, here and here for more information.
How does the Disability Visibility Project aim to uplift the voices of the disabled? What kind of impact do you think the Disability Visibility Project has had?
The word ’empowerment’ is overused but the DVP truly does empower people—the tools and resources are there for disabled people to use. They can shape their narrative in any way they want and by creating new media that’s more authentic, it will amplify and uplift those voices. Not really sure what kind of impact the DVP has on mainstream media but the disability community seems to dig it and that means the world to me. I hear people are using the content from our website in classes and that’s awesome. As the DVP evolved, it created a space online for people to have conversations outside of the recording booth. Our Facebook group has over 5000 members and it’s a place where I curate links to blog posts and information about disability culture. Some interesting debates take place in that group, sometimes very heated and contentious but overall folks are respectful of one another. I also host Twitter chats on specific issues such as a recent one on 4/14 on North Carolina’s bathroom law and the conversation was about transgender and disability solidarity w/ 2 disabled transgender people as the guest co-hosts. These kinds of activities energize me.
Have you seen any improvements in the media when it comes to showcasing the disabled, the issues affecting the disabled, etc.?
It’s still pretty sucky. The recent report by the Annenberg Center that was widely touted as the go-to report on diversity in Hollywood completely excluded disability in their report. It’s hard to improve things when you’re totally erased at the outset. However, there are many people working hard to start those dialogues and slowly work their way in to a ‘seat at the table.’
Social media is great in trying to balance out this lack of representation where there is room to create and signal boost great work that’s diverse and authentic.
There a lot of diversity fights out there, but unfortunately, we don’t see too many groups who advocate for the marginalized extend that fight to the disabled. What are ways the non-disabled can support the disabled in the fight for inclusion?
I know there are lots of folks tired of supporting others while others don’t support them. I noticed the conversation during the Oscars when there was pushback of Asian Americans who talked about the lack of diversity in Hollywood in response Chris Rock’s comments. It can sound like, “What about me?” and the push to de-center any specific conversation or focus.
I’m probably guilty of that too or may seem like it because it is rare that disability is ever mentioned so I have to say, “What about us?” to even introduce the notion. At the same time I genuinely try to be a good ally and support activism across movements and intersectional identities.
One thing non-disabled people can do is think, “Who’s missing?” and do something about it whenever there is a discussion of diversity. It’s not only about race, gender, age, sexual orientation, and gender identity. Plus engaging with disabled people is another step after asking that initial question.
We know about Black Lives Matter, 18 Million Rising, CAIR, NCLR, etc. But even though disability and racial issues overlap, it doesn’t seem like they’re always focused on at the same time. With that said, who are some disability advocates/advocacy groups the non-disabled should get to know?
I’ve had to good fortune to come across some amazing disabled people of color in my local community and online. Here are some disabled people of color your readers should check out (among many others):
Mia Mingus, a queer disabled woman of color who writes about and works in disability justice and transformative justice community organizing
Showing Up for Racial Justice has a Disability and Access toolkit that folks can use
Dior Vargas, a Latina feminist mental health activist who is the creator of the People of Color and Mental Illness Photo Project.
How can individuals contribute to the Disability Visibility Project?
There are several options—folks can record their story using the StoryCorps app, if they live in San Francisco, Atlanta, or Chicago they can go in person to the recording booth. We also accept guest blog posts for as another option for those who prefer to communicate via written or visual language. We also partnered w/ another organization’s Instagram campaign #365DaysWithDisability where people can submit photos. Details on how to participate here: https://
What’s your vision for an inclusive America?