On June 4, 2015 Ellen Wu interviewed her childhood friend Alice Wong at StoryCorps San Francisco for the Disability Visibility Project. Below are some condensed and edited excerpts from their conversation.
Origins of the Disability Visibility Project
Ellen: Okay. I’m going to go serious. We’re here today because of a project that you were instrumental in launching, which was the Disability Visibility Project. Tell me about the disability visibility project. How did you come up with the idea? What inspired you to get involved, and what are your hopes for it?
Alice: About three or four years ago I went to a StoryCorps event in San Francisco. It was a live event where they had actual participants who were featured in StoryCorps including their animated shorts and broadcasts on NPR’s Morning Edition. These are some of the people that I listened to and really enjoy having met them. They talked about their experiences and that was really exciting. As a listener and a fan, those stories really were like pictures in your mind. You really felt such connection to them. They’re short, but they have an impact.
During that event they talked about various community partners they have. I thought, “Oh, I’m in the Bay Area. I wonder if they’ve ever done one with a disability organization since there’s such a large and vibrant disability community.” I approached somebody and I think after a year or two, about a year of emailing back and forth, I proposed, “What do you think about a disability community specific partnership?” The people I spoke to were really receptive to it. It was a matter of getting the parameters down. This was in the early 2014, 2013/2014, and I thought, “What’s going to be the big theme behind this project?”
Already, people in the disability community were planning events and talking about the 25th anniversary of the Americans with Disabilities Act. Which was going to be this big time celebration this past July 26, 2015. Back in 2014 I thought, “This could be the launching pad or a theme to jump on this bandwagon.” I thought the timing was really lucky in the sense that I had enough time to think about it and to really push it out.
It launched July 2014. The purpose is to document and record the stories of people with disabilities doing whatever. It’s illuminating what people are doing, what they care about. It doesn’t even have to be about disability rights, or politics, or about the ADA. It’s really about how are people living now.
I also created a tagline for the project: “Creating disability history one story at a time.” I do believe that through story telling, we are going to create an archive that one day people can use for, hopefully, historical purposes, or just educational purposes.
Ellen: I total am with you there. I’m really psyched that you did this. As a historian I think this will be a very rich archive down the line.
Alice: I think people don’t realize, in the current day, that what we’re doing is historic. I think it is important to remember what we’re doing now so that it can be preserved for the future. As a historian, what are your thoughts about utility of our history? Is that something that is still a really important resource in terms of research?
Ellen: It definitely is for people … Well first thing, you probably have to do more recent history, but for folks that are more ordinary folks who are not necessarily in positions of power, sometimes oral history is the most effective way of capturing the, I guess Clifford Geertz would call that kind of thick description of that, right? That texture of people’s lives that you can’t just get from reading government documents.
For some people, maybe other traces they leave behind in a written sense, like maybe a birth certificate, maybe a death certificate, maybe a library card. That’s not enough to get a full look into somebody’s life. I love embracing the ordinary. I think that’s why I started off with the coffee question because we know a lot about you, but knowing how you take your coffee and your former addiction to sugar. Yes, I think it’s great.
Alice: I do think that there is a thing about the ordinariness of everyday people. There’s a lot of beauty and significance on how we live our lives. I think for people with disabilities, I think in whatever is published, it’s often the big names; Helen Keller, FDR. These are all good, but there’s such a wide variety of people. So many marginalized people that aren’t of interest to the people who write history books. That’s why I chose this type of crowd-sourcing, self-voluntary creation. That’s what’s so empowering and exciting about StoryCorps as an organization.
Childhood Memories Growing Up in Indianapolis
Ellen: It is good. One of the best things I remember … do you remember … well, I want to hear your take on this. The time we were probably in 12th or 11th grade when your parents really kindly … well, you orchestrated a field trip up to Chicago.
Alice: Yes. So fun!
Ellen: You tell the story.
Alice: I guess I really was into the arts, not as an actual participant. More as an admirer. I think the Art Institute in the early 90’s had a visiting Claude Monet exhibit. You could buy tickets ahead of time and I thought, “Road trip!!” We, as a family, and as a lot of Chinese families, would often just take a day trip to Chicago specifically for dim sum and grocery shopping.
Ellen: It’s like a three-hour ride to have lunch and buy groceries.
Alice: That’s what you do as Chinese Americans who have no decent groceries or dim sum in Indiana in the 1990’s!!
Ellen: Sheer desperation would drive you.
Alice: I’m sure now it’s better, but they didn’t suffer like we did. I think that that kind of distance made you appreciate it so much more; the effort it took to enjoy that food. I thought while we’re out there we can go to the museum and why not have our friend Simon and Ellen join us. It was a ragtag van full of us kids. We definitely ate something before or afterwards.
Ellen: I think we went to Giodarno’s stuffed crust pizza.
Alice: That was good. We went to the museum. It was fun. it was a road trip without us having to drive.
Ellen: You blew my tiny mind. That’s really the first time I can remember going to a serious art museum. There was a huge collection of Monet paintings.
Alice: They were really good.
Ellen: This was the thing. You always knew, for my birthdays you would give me literary books for gifts. One year it was Angels in America. Another year it was a book about coffee. You planted the coffee snob seed in my head. I don’t know how you knew about this stuff. Once you forced us to watch a David Lynch thing [Twin Peaks].
Alice: That’s the nerd in me.
On being disabled and growing older
Ellen: I appreciate that, because I think recently you had published an essay in Amerasia Journal, sort of reflecting on growing up with a disability as an Asian American as well. What really struck me, as long as we’ve known each other. I didn’t realize …
Alice: The anger?
Ellen: The anger and the depth. Again, I think it goes back to the original things that we were talking about. Just the ordinary things that we mostly take for granted as able bodied people. Just how you have to think out so many things so far in advance. They don’t always work out, but also the emotional consequences of that. The psychological, I don’t know what you would call it, effective or something. The consequences of those challenges.
It makes me think of another question I had for you. Going back to living with disabilities. You have muscular dystrophy, and you were born with it. Of course we know that it’s a debilitating disease. I know it’s a big part of your life. I wanted to ask you to reflect on how it’s shaped your views on living, on dying, and your own mortality in particular.
Alice: I’m so glad you asked me this, and I do want to thank you. You were the one who shared the call for submissions to Amerasia because they … I think it was their very first special issue on illness and disability. It was so exciting to see a journal about Asian American studies take this subject on.
I asked you, “I don’t know, what should I do? What should I write about?” I don’t have anything scholarly but maybe they’ll publish an essay. It was a really wonderful exercise to put my story out there. It’s one of the first my own personal stories really being out there. I want to thank you for that, for encouraging me to do that. You did encourage me.
I’m very in touch with my body and the changes with my body. I think people with disabilities who have similar conditions, we all realize that what is normal is on a continuum, and so is my functioning and my independence. It means it’s very fluid. People think independence means being able to do everything yourself, by yourself. That’s one way to look at it. Another way is to say, “As long as I can direct my own services, and direct my own care I am still being independent.”
Ellen: Sort of an autonomy or decision-making power.
Alice: That to me is the essence of what it means to be independent. A person that exercising their autonomy. People with disabilities are in a world that is still hostile, I think, to disability. We have to defend out autonomy everyday in these micro aggressions. Like you said about only navigating through physical environment, there’s really the social environments where kids make fun of you.
I remember where people were not just being very nice. In second grade a kid pushed me down in the playground because I was very wobbly and uneven and he just walked in. A kid pushed me and I hit my head and had to go home. Things like that happen, and those were really … it made you grow up really, really fast. It helped me become a sociologist because I really did learn about power, about different groups, about shared meanings. That, to me, was great about having being involved in sociology. It gave me this framework to think about disability as more than just an internal, biological difference. That really helped me channel my anger in lot of ways too. To become more of an advocate and to use that individual anger to help other people
I joke about being an angry, disabled Asian girl but it is something I’m proud of. It’s formative…I learned, as a disabled person in a non-disabled world, you really are acutely aware of certain cues and how far you can push things and how to frame things in a way. Sounds very manipulative, I know, but you have to be savvy about interpersonal relationships. I feel like growing up disabled really helped me in that sense. I had a very early education on that. People who become disabled later on, they really do suffer a real loss and grieving. This is what’s always, when I’m down …
Ellen: You hadn’t loss anything.
Alice: I don’t think so. I am conscious that my body has really changed a lot. I’m do think about my death and it might be another reason why I started this project is that I do wonder, I don’t think I’m going to have any children. I don’t really know if my siblings will have children. I think about my family, the Wongs, when we’re dead and gone who’s going to remember us and what we did, and what we were like? I do wonder what kind of mark I’m going to leave. I think about that a lot. That’s another egotistical, narcissistic reason for starting this project! The Library of Congress will have at least fifteen interviews I’ve done with people, and this one with you so that somebody will listen and maybe take notice.
It is weird. I do think about what’s it going to be like.
Ellen: Being dead?
Alice: Dying. I do think about that because I am basically weaker now than I was three years ago. I can definitely see differences within even ten years, like night and day. I really changed the way I’m able to do things. That’s just a reminder of, Gosh, that’s really coming up. Who knows for anybody right? All we can do is have coffee, enjoy life.
Ellen: Post pictures of everything you eat on Instagram.
Alice: Yes, and be with the people you care about. Enjoy every moment. I think about it a lot. Hopefully this is something for people, not just something for myself. Hopefully this is something you can leave for everyone to enjoy.
Ellen: If you don’t royally screw things up, at least trying to leave things at least a little bit better for the next person.
Alice: I think that’s the rule. I feel very honored that you interviewed me. You were really the first one so I’m really touched that you came here.
Ellen: I’ve been really honored to be asked.
Alice: Thanks Ellen.
Ellen: Thanks Alice.
For more: http://disabilityvisibilityproject.com/about/
Ellen D. Wu is assistant professor of history at Indiana University, Bloomington. She is the author of The Color of Success: Asian Americans and the Origins of the Model Minority. From Dr. Wu’s profile from Indiana University: “Questions of relationships between the foreign and the domestic also fuel my work as a teacher. As an historian of the twentieth century United States, I offer a range of classes from the modern U.S. history survey to an upper-division intensive writing course on Cold War America. I also teach the histories of Asian Americans, the inextricable connections between immigration and the race in the United States, and America’s Pacific entanglements.”