Alice Wong, who has spinal muscular atrophy, knew that it was important to get regular pelvic exams. But the woman’s health practice where her doctor works did not have a single adjustable height exam table. So instead, Alice went to “the clinic upstairs” where they had just one adjustable exam table. There she was seen not by her own doctor, but a nurse practitioner.
“Part of the job of having a disability is living in a world that is hostile toward you programmatically, structurally and socially,” said Alice. “It’s normal to go though hoops to get the basic health care that everyone else has–and takes for granted.”
We first heard Alice’s story on the Disability Rights Education and Defense Fund (DREDF) Healthcare Stories Project, a program that the Special Hope Foundation provided funding for.
Alice, a researcher and disability advocate, is also the founder of The Disability Visibility Project. The project is partnering with NPR’s StoryCorps, launching a year-long campaign to encourage Americans with disabilities to record stories like Alice’s at three StoryCorps locations: The San Francisco Bay Area, Chicago and Atlanta (and their mobile tour) from July 2014-2015.
The Disability Visibility Project aims to record and preserve disability history by creating an archive that will be included in the American Folk life Center at the Library of Congress celebrating the upcoming the 25th anniversary of the Americans with Disabilities Act (ADA).
“The ADA was a landmark civil rights law that prohibited discrimination based on disability. In the year leading up to the 25th anniversary, says Alice. “We are taking this opportunity to remember and reflect as a community on the tremendous changes we’ve experienced so far.”
“The history of people with disabilities rarely makes it in textbooks so our project’s slogan is simple: ‘Recording disability history, one story at a time.’”
For more information on how to participate in the Disability Visibility Project, go to:
Feel free to contact Alice if you have any questions:
Alice Wong, Project Coordinator
Disability Visibility Project