I was immediately inspired when I discovered the Disability Visibility Project, a community partnership with StoryCorps aimed at collecting and preserving the stories of people with disabilities. Founder Alice Wong, Staff Research Associate at the Department of Social and Behavioral Sciences at UCSF, began the project in July 2014. Here, she talks about the project’s lasting impact and what she sees as the biggest barrier in society right now with regard to the disability community…
Can you tell me a bit about yourself and how the DVP came about?
I live and work in San Francisco as a researcher at the Community Living Policy Center and I’m an active member of the SF Bay Area disability community. I’ve always enjoyed listening to StoryCorps stories every Friday on NPR’s Morning Edition. I attended a live event at StoryCorps in San Francisco about two years ago and I learned about their community partnerships with various organizations and that sparked the idea of one that’s specifically aimed at people with disabilities.
Why is this project so important, not just for the disability community, but for society as a whole?
There aren’t enough stories and history about people with disabilities in their own words and on their own terms. With the legacy of institutionalization and rampant discrimination, people with disabilities have been integrated into American society for less than 50 years if you think about it. Also, media and news about people with disabilities is usually through the non-disabled person’s perspective and that can create stereotypes and cliches about what life is really like. We’re not angels and inspirations nor are we monsters and parasites.
What can the able-bodied community learn and take away from the stories shared in the DVP?
We are the largest minority in the United States; there are approximately 57 million of us and we’re everywhere! Not everyone has a visible disability, but we are present in almost every aspect of community life.
The ADA is all about breaking down barriers for the disability community. What do you see as the biggest barrier in society right now? How have you personally experienced this in your own life?
One barrier that’s really tough to combat is having low expectations. I experienced this first-hand as a kid with a disability. Kids know when adults look down on them and they can feel it when you don’t think they’re capable or as valuable as other kids. This barrier can’t be solved with a law, but in the way we think about disability, that it’s about doing things differently rather than being ‘less than.’
In what ways do you think society’s attitude toward the disability community has changed in recent years? Why do you think it’s changed?
I’d like to think that people are less surprised or shocked when the see a person with a disability out in public or in a position of power or prestige. There should be diverse views on who we are — we can be talented, jerks, millionaires, or slackers — just like everyone else. This culture change takes time and it happens as more people with disabilities are visible in their communities (and I don’t mean literally visible, I mean as an identity). Being ‘out‘ and open about being a person with a disability is the start to greater acceptance and understanding by non-disabled people.
If you could tell the world one thing in honor of the ADA’s 25th birthday, what would it be?
Easy! Use the new StoryCorps app and record a story for the Disability Visibility Project or go in person to a StoryCorps booth! Our project will end December 2015 and there is still time to be part of our archive. Anyone with a disability is encouraged to record a conversation alone or with a friend and there are no guidelines on what to talk about as long as it’s about the lived experience of disability.