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.
