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“Hell-raising Disabled Asian American Woman” Preserving Stories from Disabled

Alice WongBy Ellen D. Wu for AsAm News

Next year marks the 25th anniversary of the Americans With Disabilities Act (ADA), the landmark civil rights legislation that literally opened doors to millions by outlawing discrimination against disabled persons in the United States. The Disability Visibility Project (DVP), a yearlong grassroots campaign to preserve the stories of people with disabilities, has just been launched to commemorate this momentous milestone. In partnership with StoryCorps, the national oral history organization, DVP will facilitate the recording and archiving of personal experience at recording studios in Atlanta, Chicago, San Francisco. StoryCorps’ mobile recording booth will also travel throughout the country to collect interviews for DVP.


DVP is the brainchild of Alice Wong (pictured), a self-described “wheelchair-using, hell-raising disabled Asian American woman.” Born and raised in Indianapolis, Indiana, she now calls San Francisco (more specifically: the Mission) home. In addition to working as a staff research associate at the University of California, San Francisco’s Community Living Policy Center, Wong also serves as a presidential appointee to the National Council on Disability. She is also active in the world of the interwebs, contributing occasionally to various disability and social justice-oriented blogs, including the Asian American/Pacific Islander-focused 18MillionRising, and her own highly-trafficked Twitter timelines (@SFdirewolf and @Disvisibility). Here Alice tells how she got the idea for DVP and explains why it is important for Asian Americans and other people of color to participate in the project.


What inspired you to launch the Disability Visibility Project?

I always loved listening to the StoryCorps segments on NPR’s Morning Edition and watching their animated shorts. One of my personal favorites was of Kay Wang, which reminded me of lots of cantankerous and stubborn Chinese aunties and grannies I know.

After attending a StoryCorps event in San Francisco and hearing about their community partnerships, I thought it would be an exciting prospect to form something specifically for the disability community since there’s such a long history of activism in the SF Bay Area.

After several months of discussion, I pitched this idea and framed it as part of a year-long celebration before the 25th anniversary of the Americans with Disabilities Act in July 2015.

To me, talking about the lived experience of disability IS a part of preserving disability history and I thought it would be a great fit with StoryCorps’ mission.


How did you become involved with disability issues?

I think the first time I ‘spoke out’ as a person with a disability was when I was a teenager and read an article in TIME magazine about accessible public buses. I was so excited about this idea that I wrote a Letter to the Editor and it was published! The letter said something to the effect that I hoped more cities would have accessible mass transit. I believe this was around 1990 or 1991, when many cities still did not have fully accessible bus/train lines.


Most of my activism began later on as a graduate student when I had to deal with a lot of accessibility issues at my campus. I was at a graduate health sciences campus and was one of a handful (less than 5) of wheelchair-using students. Quickly, I realized systemic and policy changes would benefit everyone rather than working on things that would help me as an individual. Most of my accommodations had to do with the location of my classes and accessible housing and buildings. While the university made many of these changes in preparation of my arrival and during my time at the school, I wanted to make sure that administrations understood these changes weren’t just for me. A very small group of students (including me) formed the first campus organization for students with disabilities and we called it DIG (Disability Interest Group) and it included both staff and faculty. As a result of substantial advocacy activities by DIG, we lobbied to the Chancellor to have a Chancellor’s Advisory Group on Disability Issues. The campus already had advisory groups on the status of women, the LGBT community and other groups and we made a case for a place at the table. These advisory groups are charged with advising the Chancellor and examining policies and practices at all levels. I was the Co-Chair of this committee for several years and it was a great forum to bring people together who want to improve accessibility and highlight emerging issues facing the campus community. This is something that will endure as students, faculty and staff come and go.


I want to see more students with visible and invisible disabilities in graduate school and part of that requires more ‘visibility’ of a campus that values people with disabilities, especially by educators, supervisors and the administration. From that, I became connected with other people in the Bay Area disability community that opened me up to a whole new world.


Long story short, my experiences as a graduate student led to my activism in the disability community in addition to my research.



Do you see yourself as an activist in the disability rights movement? Would you characterize your work as part of a “disability rights” movement?


Yeah, I’m not really sure if people in the disability rights movement would see me as an activist. I’m someone who does research and writes about disability. I use various social media platforms to speak out and comment on current issues facing people with disabilities such as racial/ethnic disparities among people with disabilities, the sexual rights of people with disabilities, bioethical issues and the importance of community living options rather than institutions for people with ‘severe’ disabilities who use personal assistance. However, I never attended a direct action or engaged in civil disobedience. I never worked at a non-profit or provided services to people with disabilities.


I think today, more than ever, being an activist/advocate can come in many forms. While activism isn’t my ‘full-time job,’ I see it intrinsically linked with my identity and my work as a researcher. I do believe that people who conduct research about people with disabilities or disability-related programs/services are obligated to make that information as accessible and useful for advocates and other stakeholders. Researchers should also include the perspectives and input by the disability community if their research focus is about them.


Through conversations via social media and in person, participation in community organizationsm and my role as a Council Member in the National Council on Disability, I do think that part of my life’s work is part of the disability rights movement.


When and how did the disability rights movement emerge? What does that movement look like today? Are Asian Americans an active part of the push for disability rights?


Many people might think the disability rights movement is a recent phenomenon but it’s not. There have been efforts since the 19th century and most likely before but that history is not as well known or documented.


The disability rights movement really galvanized in the 1970s as people with disabilities throughout the country began to advocate for the right to live independently with adequate services and supports and equal rights in housing, transportation and employment.


Now the movement is more diffuse and diverse. It’s an exciting time where I think people with disabilities can more easily connect with one another and not feel so isolated. There are more efforts that are cross-disability including partnerships with other allies that can be very successful and beneficial.


Despite all the progress, I don’t think things are super great for people with disabilities, (e.g., employment rates, disproportionate rates of suspension and discipline of students with disabilities), but things have improved quite thanks to the hard work, civil disobedience and activism of people with disabilities from previous generations and now. With a generation of young disabled people who never knew life before the ADA, their perspective and frame-of-reference is completely different. This can bring about some new ways of thinking about disability in a broader, more expansive notion.


Other than Yoshiko Dart and people I know locally such as Stacey Milbern, Mia Mingus and Jean Lin, Outreach Coordinator of APIDC, I don’t know of many other Asian-Americans who are prominent in the disability rights/disability justice movement. Again, this may be my own lack of knowledge and I am sure there are many who are active but may be unrecognized or unknown. I talked about this several times and I’ll say it again: It is so odd that there are so few disabled people of color in leadership positions in the disability rights movement. Sure, there are people who work in the field and advocate in their local communities, but when it comes to national and state organizations, where are the disabled Asian-Americans, African-Americans, Latinas/os, Native Americans among other racial and ethnic minorities? There are organizations such as the National Black Disability Coalition and APIDC (Asians and Pacific Islanders with Disabilities of California) but organizations like those are few and far between. Many independent living centers have outreach programs to diverse communities, but that’s something different altogether. I really wish there were more disabled people of color in prominent roles in disability rights organizations—it’s not just about representation but giving voice to the unique experiences of minorities with disabilities and pushing back at the forces that continue to marginalize and exclude us.

How does your identity as an Asian American (woman, etc.) shape your identity as a disabled person, and vice versa?


They’re all mixed together for sure. My various identities all shape my interactions and experiences and they color one another. These different vantage points highlight the similarities more than the differences, in my opinion. Sexism, ableism and racism are all part of the intersecting axes of oppression. It’s basically all about power. I will say that I have encountered more discrimination and stereotypes based on my disability rather than anything else about me although my gender, class and race undoubtedly inform those interactions.

Why do you think it’s particularly important for Asian Americans to get involved with the Disability Visibility Project?


One of the goals of the project is to highlight the stores of all people with disabilities, not just the people who are already well-known. I hope Asian-Americans with disabilities participate because their stories need to be told. The Asian-American experience is unique and even more so for Asian-Americans with disabilities. It still feels like there’s a lot of shame and stigma about disability in various API (Asian Pacific Islander) communities. Many don’t even think of their disability (e.g., mental illness) as a disability. Many may still exclude family members with disabilities from social gatherings. Stereotypes, low expectations and superstitions still persist about disability in some API communities. This isn’t to say it’s all doom and gloom. There have always been Asian Americans with disabilities in the U.S. The challenge is encouraging Asian Americans to become active in the disability community and to embrace their disability identity in addition to their other identities with a sense of pride.



What would you say to someone who thinks, “Oh, my life story isn’t interesting enough to be recorded?”


I feel that way about myself! So it’s a little funny as I do all this publicity and outreach telling people to participate in StoryCorps I wonder what I would even talk about during a 40-minute session. However, I recently interviewed a good friend of mine, Ingrid Tischer, and the time just flew by—I only asked 2 out of the 10 questions I prepared! I believe the key is to find someone who knows you well, someone who you’ve experienced a lot with or someone that shares the same interests as you. Everyone has a lot of good stuff to talk about. The stuff of our everyday lives, like how I like to make my coffee or my unhealthy love of Game of Thrones, those things are just as important and historic as my work at the National Council on Disability. There are no rules on what a person should talk about for the Disability Visibility Project, but if they could focus it on their experiences as a person with a disability, their passions, work, relationships, activism and personal reflections, that would be just great.


For more information on the Disability Visibility Project, go to http://disabilityvisibilityproject.com


Ellen D. Wu is Associate Professor of History at Indiana University, Bloomington. She specializes in issues of race, immigration, citizenship, and nation through the lens of Asian American history. Ellen is the author of The Color of Success: Asian Americans and the Origins of the Model Minority (Princeton University Press, 2014). Follow her on Twitter @ellendwu.



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