My initial newsletter draft was to comment on the attempted gutting of the Department of Education in late October when all but one employee of the Office of Special Education was fired. Without these resources, the 24 million disabled children in America would be at risk of losing the advocacy of ensuring that states comply with protecting their rights to a public education in the enforcement of the Disability Education Act (IDEA). Before IDEA, disabled children were commonly refused admission to public schools and may have been institutionalized. But on Friday, I heard of the death of Alice Wong.
Alice Wong was a wonderful writer, community organizer, and advocate. She was born with spinal muscular atrophy. This progressive condition ravaged her muscular system during her 51 years of life. She went from walking to a wheelchair in elementary school, experienced life-threatening respiratory arrest in college and in her last years of life was dependent on text to speech assistive technology to communicate. Her “robotic” visit to the White House was a first. Her access to public education was a pivotal topic of her life’s work.
Wong, born in Indianapolis, attended public schools and was in general education classrooms during that time. She wrote of her feelings of loneliness in that she was often the only disabled student, paired with being just one of a few Asian Americans in the class. She was in high school in 1990 when the Americans with Disability Act was signed to law. The affirmation of her rights, through the ADA, did much to ensure that accommodations were provided for her successful completion of undergraduate and graduate degrees. Her inability to obtain consistent Medicaid support for her personal care needs while at college forced her to move back home and live with her parents. During her studies at IUPUI she studied the history of disability and learned about the independent living movement which prompted her move to San Francisco where she completed a master’s degree in medical sociology.
If you haven’t read her memoir Year of the Tiger: An Activist’s Life I would encourage you to put it on your reading list. While it doesn’t paint Indiana resources in the best light, she does highlight some of the teachers and supports who helped pave the way for the disability rights advocate that we all came to know.
Much of Wong’s work as founder of the Disability Visibility Project (DVP) was centered around storytelling and changed the landscape of disability. In partnership with NPR’s Story Corps, DVP encourages the disabled to share their personal stories of encountering ableism, self-advocacy and dismantling the system that further “handicaps” those with disabilities.
Ms. Wong reminded us that “All people need to exercise……their right to speak out” There is no better messenger for that sentiment than one who has literally lost her voice, but continues to exercise that right. We all have a story to share. If you need help in telling your story and in finding your voice, consider exploring the Leadership Academy of the Inclusion Institute. https://the-league.org/leadership-academy/