Alice Wong with the Disability Visibility Project

Alice Wong with the Disability Visibility Project

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When talking about social justice, race, gender, sexuality and class readily come to mind. What often gets overlooked, however, is disability and the intricate ways ableism can perpetuate oppression on all fronts. As we celebrate Women’s History Month, we recall the amazing strides we’ve made thus far. We’re also taking stock of what we’ve neglected to talk about. With tonight’s show, we put a spotlight on ableism and what we need to do if we’re to truly move forward in the name of liberation and justice, now.

Here’s a powerful segment from guest producer Geraldine Ah-Sue.

Ah-Sue: Today we’re talking to Alice Wong, founder of the Disability Visibility Project, otherwise known as the DVP. The DVP is an online community dedicated to recording, amplifying and sharing disability stories and culture. In partnership with the national oral history project, StoryCorps, the DVP has not only collected over 100 disability stories told in the voices and words of those who live them, but they’ve also archived them in the Library of Congress for future generations to find. We caught up with Alice to talk about disability culture, Asian American identities, and the intersection of political movements. Just so you know, Alice uses a BiPAP machine, or a Bilevel Positive Airway Pressure, which helps keep her airways open. You might hear it during our conversation.

[Music Begins]

Ah-Sue: Part of the Disability Visibility Project is having folks narrate their stories in their own voices and in their own words. What would be the first sentence of your story?

Wong: Hmmm. “On a dark and stormy night! A baby was born in Indianapolis, Indiana. She was a very strange child….”

[Music End]

Wong: Something like that. Something melodramatic. And very gothic and dark. You asked!

[Music]

Ah-Sue: Do you remember the first time you saw yourself represented in mainstream media?

Wong: Hmm. I’ve seen people with disabilities and other wheelchair users, you know, ever since I was a kid. But, I always felt like, especially for girls of color, if we’re talking about girls of color and women of color who are disabled, I think there’s very few images out there. If we look at even just some of the TV shows with disabled characters, they’re usually white! And oftentimes, you know, it might be a wheelchair user, but that might not include all kinds of disabilities. And we all know that, for the most part, most people have invisible disabilities. And that’s something else that’s really missing in our kind of representation of disability and popular culture.

Ah-Sue: What do you think are some of the stereotypes that people of color, and particularly Asian and Asian American folks, are contending with when it comes to being visible in the disability community.

Wong: Well, I think there’s a lot of the model minority myth. You know, there’s all these stereotypes of the quiet, meek, you know, Asian Americans that either are, like, too shy to say anything, or people are not interested in getting involved. And I think a lot of that is just, you know, for a long time the disability community has never really made any explicit outreach to communities of color. If we look at especially immigrant communities, you know, we come with a lot of different ideas and values and conceptions of what disability means. And what independence means. And I think this is where there’s that big gap, that much of the disability activists in our community has been built around these American individualist notions. And I think that’s where we’re going to lose a lot of the people from Asian American communities, because have a different point of view.

I think another area that’s really, needs a lot more understanding, is, you know, a lot of the stigma and shame around disability within Asian American communities. And that’s really not well-understood by the broader disability community. Things like mental illness is still often seen as something very private, that’s not seen as a disability, or something that you can actually get treatment for. You know, this aversion to maybe getting help or asking for help is often culturally based. And I think there’s, not enough, healthcare providers that are culturally and linguistically competent, but also, I think there aren’t enough people really talking about the experiences of people who are Asian American with disabilities to really talk about what they’re living through and what their stories are and you know, where they find support. Or where they find strength. Because it may not be from the typical places that the disability community usually relies on.

[Music]

Ah-Sue: Here’s a clip from one of the interviews in the DVP collection. It’s an interview between Alice and community educator and organizer Mia Mingus. They’re talking about their lived experiences of the intersections between race, gender, sexuality and disability – points of intersection that aren’t always talked about.

Wong: I’d like for you to tell me a little bit more about, I think, being kind of, things you’ve learned from queer culture, queer movements, and other movements, and how that really fed into your understanding about your politicization as a disabled person. Because, I think so many things are balkanized in terms of various movements and groups, and I don’t understand why people don’t realize the strengths and parallels that can really feed into one another. So, tell more more about queer culture, queer movements, and how that really helped you in terms of your growth.

Mingus: Yeah, I mean, absolutely. I think — well, first off, I think being somebody who lives with multiple oppressed identities. It was just, it has always just been kind of ground level for me. Like, it was something that was instinctual. And so, even coming into political movements and people being like, “well talk about that! That’s a new thing! What do you mean by that? What do you mean your race is connected to your queerness and your sexuality is connected to being disabled?” like, is even, you know, has been something I’ve had to figure out how to do. And I think that’s probably true for all of us, right? But I think though, like, I mean, really explicitly, there are so many examples. But, an explicit example I feel like is, or a really concrete one is, I think about the ways that through my upbringing in a really close knit feminist community, I learned about, like, you know, just, the value of what it means to love yourself in a world that doesn’t love you. Right? In a world that – especially for women of color, not just women and girls, but women and girls of color – Is trying to erase us. And what it means to love us is profound. And that that is something that gets pathologized all the time. That gets demonized all the time. We get told that it’s wrong, and that it’s not ok to do that, and that you should be, all of the regular stereotypes, you should be more kind of like, quiet about–, and you should always be a little bit more self deprecating to yourself, and what have you. I feel like that helped me so much and was so aligned with like a queer narrative and a queer politicized understanding of what it means to love who you love. Whether that’s yourself whether that’s other people whether that’s other queer people. Like, that who you love is a beautiful thing. And that love is a beautiful thing. And with that, sexuality and who you desire, those are, those are magnificent things as well. And those are as well politicized things that are important. And I feel like that type of — those two really close paths and frameworks of like, loving things and desiring things that like, as women, that we would desire other women, right? Whether it’s a romantic relationship with other women, whether it’s friendships with other women, whether it’s supporting other women, whatever it is, that we would desire each other, is so powerful and that those things, that path, really lined up with disability. Because, disability is something, that, I mean at least in my life, I was consistently told and received all of the regular messages that everybody else receives. That disability is wrong, that it’s something sad, it’s something that, even if you have it it’s kind of like a tragic flaw and you should be trying to get away from it, or you should be trying to kind of like, sadly bashful in it, like, oh I had this horrible thing and I’m just making the best of my life

Wong: Well, And, also its an individual problem…

Mingus: Totally!

Wong: Versus a community…

Mingus: Exactly!

Wong: You know something that’s shared…

Mingus: Right. And it’s always like, ‘you’re just Mia, you just happen to have a disability.’ You know? And I think without queerness, I never would have — even though I was disabled, I still had so much internalized ablism inside of me.

Wong: Absolutely.

Mingus: Like, ‘oh, this is something that I should be ashamed of. I should never talk about it like it’s something good.’ But it’s like, so crazy because — or not crazy, but, it’s so strange and like bizarre because, and complicated, because inside of me, like, deep down, I knew it wasn’t bad. But I knew I wasn’t allowed to say that. So I never said that. Do you know what I’m saying?

[Music]

Ah-Sue: You’re listening to APEX Express on KPFA 94.1 FM. We’re talking with Alice Wong about the Disability Visibility Project, an online community dedicated to recording, amplifying and sharing disability stories and culture. Alice started the project in 2014 in anticipation for the 25th anniversary of the Americans with Disabilities Act, which was in 2015.

So what does it mean to you, what is the power for you, when you describe yourself as an Asian American disabled woman.

Wong: Yeah, I guess the power is that, you know I’m a lot of things. But also, it’s not that unique. We’re all a lot of things. But it’s because I name them, I give power to that. And I think there’s a lot of, a lot of Asian Americans I know that have disabilities but they don’t, you know, identify that way. Either because they’re embarrassed or they’re just like, not comfortable. And I think that’s where, I want to share the message that it’s just as much as a politicized identity as saying ‘I’m Asian American.’ So, I really want people to feel like being disabled is a great politicized point of identity that, you know, you are part of this history of people that you may not even realize you gain your strength from. So, I think there’s power in how I identify, and I really encourage people to embrace all of who they are. Even though it’s a journey for everyone. Everyone works through their stuff. But, just to know that, I guess to bring it back to disability visibility. But, it’s not about literal disability, but it’s about claiming who you are. Who your true selves are. And it can be more than one.

Ah-Sue: Here’s Alice and Mia again.

Wong: I think sometimes, you know, I myself feel like, I’m a 40 year old on paper. I feel 75. You know, just the energy, the wear and tear, and I think also just the psychic or, you know, psychological, the microaggressions that can really erode sometimes a person’s feeling of self and a person’s personhood. It really ages you. And, I’d like to talk to you about what you think about in terms of aging and the process and kind of your body changing over time. Because, you know, there are so many amazing people with disabilities. And they often die way early in their lives. And I think part of that is why I’m doing this project. Is that, we really need to capture as many people’s stories. I really do feel like we’re like an endangered species sometimes. We’re really precious, our DNA, our contribution to the gene pool of society is really unique. And we are dying out. Dying out for a lot of reasons. A lot of societal reasons. We’re not getting enough support. Poverty. You know, oppression. And our own bodies wearing out. So, tell me a little bit about your thoughts about changes in your body, and how you feel on the inside. The elder in you!

Mingus: Oh god. Oh, the elder in me is –! That conversation feels so far away from like, the changes that are happening inside of me [laughter]. I mean, I do — We talk about this all the time. That, it’s like disability ages you faster, and you have to think about things differently than, like –. We might be young in a kind of traditional, ablist, able-bodied, supremacist understanding of age, but in terms of disability, we’re actually [laughter]…

Wong: We’re pretty old!

Mingus: We’re pretty old! I feel like, my body, you know, the chronic pain is definitely getting more and more and more intense with every year. Every half year. And, you know, sometimes I don’t even know how to measure that anymore because I have such a — my baseline of like what ‘regular,’ my ground level kind of zero, you know, of pain, is just, who knows.

Wong: Well, it’s a cumulative effect. Where, you know, things are just happening so gradually. And you know, sometimes people really plateau for a while. But then some people will really go down sharply. I think sometimes it happens so gradually that it’s really hard to have a baseline.

Mingus: It is! And you have to, you have to try to prepare for the gradual, or the quickness. Like, and you don’t know when it’s going to happen. I feel like for me, you know, I can read all the stuff about post-polio that I want to, but it doesn’t… who knows how it’s going to happen in my own body, and when it’s going to decide to come and be more intense, or, you know, whatever that process is going to look like. And, yeah, and I definitely feel a difference, a huge difference, from even just like five years ago, of like things that my body used to be able to do, and things it can do now. And you know, a part of that is also, like, I was, I had so much internalized ablism growing up that I think I definitely pushed myself way too far, and so, was not even cognizant of things that I, that I shouldn’t have done. Or things that I could have been doing to make myself more sustainable. But because I was living in this ablist world with this ablist understanding of my disabled body, and because I didn’t have any type of disability framework to understand my disability in, in some ways, it was not even a choice. It was sink or swim. Otherwise, I wouldn’t have had any friends. I wouldn’t have been able to have a social life. I wouldn’t have been, you know — and I was adopted. And so it’s also like… yeah. There are so many complications there as well, right? And the ways that the Korean community hasn’t been accessible. And the ways that queer Korean community is totally inaccessible. And the ways that queer POC community is totally inaccessible also. And the hard complications around that. That so many queer people of color, yeah, it’s even [beep] hard to build queer POC community because you’re like, building it underground and you don’t have a lot of resources either. But there are so many queer disabled people of color who need access to queer POC community too. And how do we build access when under a capitalist system, access is always about money, now. And is always about exploiting more resources. And.. so, I mean, I’m just saying, I don’t, I think it’s complicated.

And I think that, like, for me, aging has become something that I think about really differently, I feel like, than a lot of able-bodied friends that I know. I’m thinking about retirement, or, not even retirement, but what gets coded as retirement. Like, I’m thinking out, aka when I’m not able to work anymore. When my body is not able to work anymore. And what I’m going to have to do and think about when that happens. Whereas, I feel like, you know, the kind of like, woman of color trope is like, you just work and work and work and work, and you know, that’s part of like, such a huge part of our identity I think as women of color. And so, what does it mean then to be a disabled woman of color and to really be putting forth questions around work. And what does work mean? What does it mean to be a woman of color who can’t work? Or who is not able to work as much, right? And in some ways, I feel like it’s totally oppression that like, makes us work harder. We’re forced to carry the brunt of a lot of ‘women’s work’ as well as just work in general as women of color. But then at the same time, it’s also like, we have this like, attachment to that too. That’s also really ablist. That we do to ourselves. And each other. And, it’s a catch-22, oftentimes.

[Music]

Ah-Sue: You talked a little bit about disability culture. What is that?

Wong: Well. It can mean a lot of things. But I guess disability culture is really, you know, things like, our stories, the way we create, the way we organize our lives, the way we do things, the way we relate to others, the way we socialize, the way we create works of art. So, there’s writings, there’s poetry, there’s music. You know, there’s stories. But there’s also just, you know, the way we gather and fill up a space. The way we share our culture by being in the spaces. It changes spaces due to our physical presence. And that to me is disability culture. When I am in a room with a bunch of disabled people, I can feel the power. And I can feel the community and the spirit. And a lot of times you know, I really wish that more people see us within these larger groups. Because oftentimes nondisabled people, maybe there’s one person with a disability, and oftentimes it’s always within this very individual aspect. But when you see a community-based aspect of disability culture, it’s really special. When we gather together, and share space. There’s something magical that happens.

Ah-Sue: Do you feel there is an Asian American disability culture?

Wong: I’m sure there is. I think um… I’ve been very fortunate I think with Twitter and Facebook. That I’ve met quite a few Asian American disabled people. And we always joked about, oh when we grew up we always felt like we were the only ones. And now that we can have these online communities, where we know that we’re not the only ones. There are people out there who I’ve actually semi-stalked. And, I’m like, oh my gosh, there’s this other disabled person who’s Asian or Asian American. And I’m like, I’m going to find out about this person, and I’m going to try to casually introduce myself. And most of the time this has happened, it’s always been really exciting relationships. Because we do feel a kinship. And because, sometimes, unfortunately, we’re still, we have this sense that we’re unicorns. That we’re just, one of a few within Asian American circles, and one of a few within disability circles. So, that once in a while, it’s like, oh my gosh! Hey buddies!

Ah-Sue: So, is part of the project, or part of your work, dispelling the myth of unicorns.

Wong: I hope so. I just want to, hopefully through these stories, show the richness and the real wide variation in terms of the disability experience, by, just the way that people approach it, or the way that people see themselves. And also, by how people, what they’re doing with their lives. And I think this is where, the more people can say, you’re a part of this, the more people see the huge variation of diversity. So, that would be a real goal of mine is to really look for – and I’ve been very explicit about really wanting to highlight the most marginalized disabled people. So to me, my role is really just to facilitate that and to make sure it gets out there as much as possible.

Ah-Sue: This is just the beginning for Alice! To learn more about how you can get involved, visit disabilityvisibilityproject.org