Thanks to social media, I recently learned about an important grassroots initiative in the US to gather stories from persons with disabilities about their experiences. To celebrate the upcoming 25th anniversary of the American with Disabilities Act (ADA) in 2015, the Disability Visibility Project is encouraging persons with disabilities to have their stories recorded and available to the public in an effort to preserve and make these histories accessible.
Founded by Alice Wong in 2014, stories from Americans with disabilities will be collected and archived at the American Folklife Center at the Library of Congress. Persons with disabilities who want to participate can make a reservation with StoryCorps San Francisco and record their story. By tagging their interview as part of the Disability Visibility Project, individual stories will become part of a larger grassroots tapestry that will highlight the lived experience of disability.
As a researcher, the appeal of initiatives like this are in their power to position persons with disabilities as the experts in their own experiences and needs. Additionally, individual stories are important as they help counter the existing history of disability – which is largely dominated by a medical model that erroneously frames disability as an individual tragedy and/or uniform experience. Documenting and sharing individual stories counters this problematic history through the preservation of narratives that celebrate the knowledge, skills, and individual and collective power within this diverse community.
I had the opportunity to briefly speak with Alice Wong about this important project, below are some of her answers.
Q: How did this project start?
A: I went to a StoryCorps event in San Francisco and they talked about the various community partnerships they had with different groups. I went up to them and asked if they’ve had any partnerships with any disability organizations and they said not yet. It sparked an idea that I could do something with StoryCorps about disability history with the upcoming anniversary of the ADA in 2015.
Q: Can you speak to what you believe to be the power behind sharing personal stories?
A: Talking and sharing about your life with someone is a powerful act. It’s an act of bravery to reveal your thoughts and emotions with someone. When you’re vulnerable and open yourself to an intimate and honest conversation, these interactions can change lives and this can have a ripple effect among the people around us.
Q: The project celebrates the upcoming anniversary of the ADA, what do you think are some of the most significant accomplishments of this legislation?
A: The ADA prohibits discrimination of people with disabilities and mandates equal opportunity and access in some of basic life activities (e.g. employment, transportation, public facilities and government services). While there have been many important pieces of legislation impacting people with disabilities such as the Rehabilitation Act of 1973 and the Individuals with Disabilities Education Act, I think the ADA is ‘our’ civil rights law that identifies us as a protected class, this means that we have some basic rights and that there are legal means to ensure those rights when they are violated. It’s not a perfect law (no law is), but it provides a tool to advocate for full participation in society.
Q: Lastly, while the collective benefits of the Disability Visibility Project are clear, what are some of the individual benefits for participants?
A: I hope people have fun with this experience—there are no rules on what a person should talk about. Ideally, two individuals who know each other well will take some time to have a conversation about things that are important to them such as their connection to each other or their passions in life. Overall, I’d like people with disabilities to celebrate and discuss their lived experiences because every story matters.