Alice Wong

In 2015, under the administration of President Barack Obama, Alice Wong became the first individual to visit the White House by way of robotic intelligence. Wong, an individual with Spinal Muscular Atrophy, chose what she would term as a more accessible form of transportation. Via a camera on motorized wheels, she was able to communicate with the President from home, while also maneuvering around the White house. Accessibility, collective access, and inclusivity are all words that have driven Wong’s personal and public life. She has been an important advocate, author, and project coordinator within, and for, the disabled community.

Born in 1974 in Indianapolis, Indiana, Wong was a first-generation child of Chinese-American parents. At birth, she was diagnosed with spinal muscular atrophy (SMA). SMA is a genetic disorder that causes an individual to lose nerve-functioning in the spinal cord. This loss of nerve stimulation results in the inability of muscles to function properly. Finally, atrophy is the medical term for shrinking, which is what generally happens to muscles that are not being stimulated by nerve cells. In Wong’s eyes, her “disability” has not been a “disability” at all. Rather, it has been an outlet to communicate the experiences of the disabled community with the wider society in important ways, writing: “Art is supposed to make you feel something, and I began to realize my appearance was my art. My body, my face, my scars told a story—my story. But I guess that’s how life works sometimes—noticing beauty only in retrospect and poetry, in silence.”  In her novel, Disability Visibility, Wong writes of the importance of sharing one's story in any way possible. “Storytelling,” she explains “can be more than a blog post, essay, or book. It can be an emoji, a meme, a selfie, or a tweet. It can become a movement for social change.” One example of this “accessible” mentality can be seen on her website, The Disability Visibility Project. All photographs, for instance, are carefully described for individuals who are visually impaired.

Alice Wong’s development in Criplit (literature of individuals with disabilities), disability culture, and disability studies evolved over time. In 1997, Wong received a BA in English and Sociology from Indiana University. In 2004, she received a Masters's Degree in Medical Sociology from the University of California. Medical Sociology is a niche discipline that remains underdeveloped. It studies the dominant society's perception of the disabled community and its socio-cultural impact on the disabled individual. Furthermore, it looks at inequities in the medical field, in schools, in legislation, and so on. Upon completion of her master's in medical sociology, she worked at the University of California, San Francisco as a Staff Research Associate for over 10 years, publishing scholarly articles such as,  “The Work of Disabled Women Seeking Reproductive Health Care.” Throughout her education, Wong had noticed the scarcity of literature within the field of disability studies and devoted herself to its growth.

Currently, Wong is the project coordinator for The Disability Visibility Project (DVP). The DVP’s fundamental belief is that individuals with disabilities must share their stories. The DVP publishes works on ableism, intersectionality, and disability rights. Wong states, “This may feel true for every era, but I believe I am living in a time where disabled people are more visible than ever before. And yet while representation is exciting and important, it is not enough. I want and expect more. We all should expect more. We all deserve more.” This sentiment drove Wong to a life of activism for the disabled community. Channeling this energy allowed her to assume positions on an advisory board for Asians and Pacific Islanders with Disabilities of California (APIDC). Moreover, from 2013 to 2015, Wong became a presidential appointee to the National Council on Disability. This is a federal agency that advises the president, Congress, and other federal agencies on disability policies, programs, and practices. Thus, Wong has radically accelerated the development of inclusive legislation.

Wong has received many awards for her championing of the disabled community. These include the Mayor’s Disability Council Beacon Award in 2010, the first-ever Chancellor’s Disability Service Award in 2010, and the Martin Luther King, Jr. Award of UCSF in 2007. Moreover, in 2016, Wong received the AAPD Paul G. Hearne Leadership Award, an award for emerging leaders with disabilities who exemplify leadership, advocacy, and dedication to the broader cross-disability community. Finally, in 2020, she was noted as a Ford Foundation Disability Futures Fellow.

Alice Wong’s work as a founder of The Disability Visibility Project and active presence on social media is revolutionary. Wong has been able to fuse together her two degrees (English and Sociology) to ensure that her community does not suffer from the crippling effects of isolation, which is an obstacle for many disabled individuals. Criplit, disability culture and accurate representation empower individuals with disabilities. Agency, which the community has historically been denied, is therefore taken back. Wong states, “I don’t understand it...these things, they just keep happening, and I know it has to mean something. It has to. I want my suffering to mean something. I want this pain to matter.” Wong’s legacy is found in her own pain, a pain that resulted in a vibrant and proud community that is now heard more clearer by our larger society.

Sources:

Lunn, Mitchell R., and Ching H. Wang. "Spinal muscular atrophy." The Lancet 371, no. 9630 (2008): 2120-2133.

Wong, Alice. "The Disability Visibility Project—About." Disability Visibility Project (2014).

Wong, Alice, ed. Disability visibility: First-person stories from the twenty-first century. Vintage, 2020.

“5 American Disability Activists You Should Pay Attention To.” Idealist. Accessed June 23, 2021. https://www.idealist.org/en/careers/american-disability-activists. 

“Activist Alice Wong On The Joys And Challenges Of Being Disabled.” KALW. Accessed June 22, 2021. https://www.kalw.org/show/crosscurrents/2020-09-10/activist-alice-wong-on-the-joys-and-challenges-of-being-disabled.

Women, BBC 100. “Alice Wong @SFdirewolf ‘The World Has Changed a Lot in 2020, and I Don't Ever Want Things to Return to 'Normal'." 📷 Eddie Hernandez Photography Pic.twitter.com/darr6yQCvF.” Twitter. Twitter, November 24, 2020. https://twitter.com/bbc100women/status/1331193214695567365?lang=en. 

Wong, Alice. “The Work of Disabled Women Seeking Reproductive Health Care.” Sexuality and Disability. Kluwer Academic Publishers-Plenum Publishers. Accessed June 23, 2021. https://link.springer.com/article/10.1023/A:1005602512300.