Activist Alice Wong On The Joys And Challenges Of Being Disabled
Disability activist Alice Wong has been recognized by former President Obama, Time Magazine and most recently British Vogue. She’s editor of "Disability Visibility," an anthology featuring writers who give their take on living with disabilities today.
"For me this book is a snapshot of what the disabled experience is like for some people."
Click the play button above to listen to the interview.
This interview first aired in September, 2020.
JENEE DARDEN: Something that changed your life was the Americans with Disability Act. You’ve said that basically helped you live the life that you had envisioned for yourself. Where were you when that came into effect and what were the changes that you foresaw for yourself?
ALICE WONG: So I was a sophomore in high school in 1990 when the law passed. I have to be really, honest. I don't remember noticing it. It wasn't something that registered deeply into my brain. It really wasn't until I graduated from high school and needed to go to college that I really realized, wow. You know this law came right in time to really ensure that I do have the ability to request reasonable accommodation. It's been a real key in order for me to go to school, to get what I need. I have a law that I can call my own. I can say, hey this is something that I need to perform my daily activities and just not have to beg for it. Even though I think the experience now is still very difficult. A law doesn't change the world. I think it's really about people power.
DARDEN: You figured out this life that you wanted. The ADA helped. You say, “Hey, I can make this come true.” Then you told your family, "I want to move to California." How did your family feel?
WONG: I think they knew because I really felt suffocated and stifled in Indianapolis, and I thought hey the San Francisco Bay Area is such an epicenter of like a huge, vibrant, active disability community. You know they were the heart of where a lot of the independent living movement happened. You have a large community of disabled people, just like any other community where when you're seen, the vibe is different.
DARDEN: You write in your book that people with disabilities are more visible than ever.
WONG: Speaking for myself, I think the Internet has been a game changer. The ability to blog on your own, to have a Twitter account. There are so many really, really cool disabled and deaf artists that are just everyday people creating content. We don't need to write an op-ed and just cross our fingers that the editor is going to run it. We can just publish our own stuff. And I think that's giving so many marginalized communities a base. To be on social media does have its huge risks. I mean, it is a dumpster fire.
DARDEN: And that's a mild way of putting it.
WONG: Yeah, it's a bag of burning poop. When I talk about visibility I'm not sugarcoating it. It's about being comfortable in your own skin. But the fact that there are people who are telling their stories by being visible, hopefully it gives permission to other folks who are still figuring stuff out. Like you're not alone. You're not alone. One of the ways that helps is seeing yourself represented in different ways.
DARDEN: I know one thing that's come up for people with disabilities is for a long time, they would ask when there’s an event or conference, can it be streamed. And these organizations would say they don't have the capacity. Now people are home and they can’t go out. And all of these organizations and companies are streaming. That’s why I say COVID is a reflection of some of the issues in this society.
WONG: It's super interesting to see when non-disabled people suddenly have something taken away from them. "Oh, this is unfair. Oh, what are we going to do? Oh my gosh, I can't believe this. We gotta do something, you know?" Suddenly there's capacity. But when disabled people ask, usually a few things will happen. Usually we're not believed, or "complaining" or “asking for too much.” I think again the pandemic has shown that suddenly everybody is impacted and they're just making things happen without the years of efficacy by sick and disabled people. What's also realized during this pandemic is what kinds of people are disposable. Right?
WONG: It's really shown how much the racists, xenophobic and ableists really feel about the people in our community. Right? It's also seen as this like acceptable loss. Right? We don't see the country really responding, acknowledging the systemic inequality. I mean you see people in prisons and they're dying at alarming rates.
Any why don't we give a sh*t about people behind bars? I mean, we can't see them. It's because they're separate from us and when you add a system that perpetuates segregation, it allows us to devalue people or just render them as invisible. And this is Black, brown, older people and disabled people. It's all interconnected.
DARDEN: This conversation has taken an intersectional term and your book is super intersectional. I mean, it's about, of course living with disabilities. It's about race. It's about class. It's about gender, culture, religion. I mean, it's so intersectional. What have you learned from this book?
WONG: Oh, thank you so much, for noticing that. I wanted to show not tell. You know, for me, this is just the tip of the iceberg. This book is just one of many books out there by disabled people. I think there's room for so much more. I think for me, this book is a snapshot of what the disabled experience is like for some people in our current time period.
You know there are some very serious pieces, but there's a lot of beauty and joy as well. And I think we don't see enough joy. I think one of the ways we do stay alive is finding joy in one another. I mean that to me what's helped me: relationships I have with people, taking time for myself, eating desserts. But yeah, we have to make space for joy and we have to take pleasure in what we can. Because there is joy in being disabled. I think that goes against almost every major idea, or portrayal. If you actually talk to people who have these disabilities, it’s like, “I'm just living my life the best way I can. Just like everybody else.” It's really the expectations people have of us that's really super, super toxic. And that's what needs to be dismantled.