Year of the Tiger: An Activist's Life

Alice Wong is a disabled Asian American activist, media maker, and founder of the Disability Visibility Project, an online community dedicated to amplifying disability media and culture. Year of the Tiger: An Activist's Life is her memoir, structured as a hybrid collection of original essays, previously published pieces, interviews, graphics, photos, and commissioned art spanning seven thematic sections: "Origins," "Activism," "Access," "Culture," "Storytelling," "Pandemic," and "Future." Wong wrote the memoir during the COVID-19 pandemic, motivated by the precariousness of her existence as a high-risk ventilator user deprioritized by California for lifesaving vaccines and sheltering in place with her elderly parents amid anti-Asian violence.

Wong was born in 1974 in Indianapolis, Indiana, to Chinese immigrant parents. Diagnosed at around age two with a form of muscular dystrophy, a progressive neuromuscular disability, she was told by doctors she would not live past 18. Her parents, new to the United States and unfamiliar with disability, raised her with common sense and high expectations as the eldest of three daughters. Wong walked as a toddler, began using a wheelchair by age seven, and transitioned to an electric wheelchair at eight, an experience she describes as liberation and the beginning of her autonomy. She grew up within a small Chinese American church community that served as a cultural anchor, attending Chinese school where community elders taught basic Chinese characters and calligraphy. She reflects on the significance of these traditions and on the meaning embedded in her given name, 王美華.

Wong's school years were marked by inaccessibility and discrimination. She rode a segregated bus that arrived 45 minutes early, sat alone in dark cafeterias, and had her locker placed in the nurse's office because all standard lockers were inaccessible. A pivotal experience occurred at Carmel High School, where her drama teacher refused to advance her to a second-level class because a pantomime requirement was deemed too physical for a wheelchair user. Wong felt powerless to fight back, but the experience politicized her. During lunch periods in the school library, she read about the independent living movement, a disability rights movement advocating for self-determination and community-based living rather than institutionalization, and Berkeley, California, and began to understand disability as a social and political identity. At 16, she wrote a letter to Time magazine about the Americans with Disabilities Act (ADA), the landmark 1990 civil rights law for disabled people, and it was published.

At 14, Wong underwent spinal fusion surgery at Riley Hospital for Children. She spent six weeks in the hospital, mostly in the intensive care unit, enduring complications including repeated intubation, internal bleeding, and a weakened diaphragm. The surgery left permanent marks: metal rods fused to her spine and a diminished respiratory capacity that would later necessitate a BiPap machine, a noninvasive ventilator that pushes air into the lungs through a mask.

Wong enrolled at Earlham College, a small Quaker liberal arts school in Indiana, but cuts to Indiana's Medicaid program, a government health insurance program for low-income and disabled people, reduced her personal care assistance hours, making it impossible to live independently on campus. She transferred to Indiana University at Indianapolis. She later moved to San Francisco for graduate school at the University of California, San Francisco (U.C.S.F.), where the university retrofitted faculty housing with an accessible bathroom. She struggled in her Ph.D. program and left with a terminal master's degree—a master's degree awarded when a doctoral student exits a program without completing the Ph.D.—a decision she frames as an act of liberation driven by the need to prioritize her health. She worked for over a decade as a staff research associate at U.C.S.F.

The "Activism" section traces Wong's relationship with Medicaid, which she calls a life-giving program. Her father told her at 18 to apply, and she initially felt shame about receiving benefits. Medicaid enabled her to hire attendants and live independently, but its bureaucratic demands are relentless: strict eligibility rules, a $2,000 asset limit, annual redeterminations (yearly re-verifications of eligibility), and constant anxiety about service cuts. Wong explains the 1999 Olmstead decision, a Supreme Court ruling establishing the right of disabled people to live in the community rather than in institutions, and its direct impact on her life through programs that provide the care hours she needs to remain out of a nursing home. In 2016, she cofounded #CripTheVote with fellow disability advocates Andrew Pulrang and Gregg Beratan, a nonpartisan online movement encouraging political participation by disabled people that engaged the community on issues including Medicaid and health care legislation.

Wong founded the Disability Visibility Project in 2014, initially as a one-year partnership with StoryCorps, the national oral-history nonprofit, to record the stories of disabled people for the Library of Congress. The project grew into a blog, podcast, and broader media platform. The "Access" section examines barriers Wong faces in daily life. She opposes plastic-straw bans, arguing that plastic straws are necessary for her hydration and nutrition and that bans place unfair burdens on disabled people. She describes progressive difficulty with eating that led her to adapt her diet to soft, fatty, liquid-based foods rather than accept a feeding tube, framing these adaptations as creative acts of bodily autonomy. With fellow disability justice advocates Mia Mingus and Sandy Ho, Wong co-created the Access Is Love campaign, which expands the concept of access beyond legal compliance to an everyday practice of love and solidarity.

The "Culture" section explores disability representation, daily life, and identity. Wong critiques portrayals of disability in film, challenges assumptions that disabled life is not worth living, and provides a detailed account of her daily routine, including the labor of managing health and bureaucratic requirements. In a StoryCorps interview with her mother, Bobby Wong, she records their family's Lunar New Year traditions, centering on a tradition from China's Shandong region of making money dumplings with dimes hidden inside. Both reflect on food as a love language, with Bobby noting that northern Chinese families show love through feeding rather than words.

The "Storytelling" section traces Wong's creative evolution, from cofounding the Disability Interests Group at U.C.S.F. with three disabled and Deaf students to arguing that public radio should include disabled voices. She reflects on her first audio story about the relationships between disabled people and their personal care attendants. In her essay "About Time," she rejects prescribed productivity norms, arguing that disabled life, where getting through the day is itself an achievement, adds complexity to creative output.

The "Pandemic" section documents Wong's experiences as a high-risk person during COVID-19. She expresses alarm that medical rationing frameworks deprioritize disabled people and argues that eugenics, the ideology of eliminating those deemed genetically unfit, remains embedded in contemporary culture and policy. She constructs a timeline of her fight for vaccine access, documenting California Governor Gavin Newsom's elimination of the priority group for high-risk people under 65, her creation of the hashtag #HighRiskCA, and her eventual receipt of a first dose on March 13, 2021, through a one-use code obtained from a disability community leader. In diary entries, she recounts learning that a manufacturer recalled ventilator machines, including her model, due to degraded foam releasing toxic particles. She declares that returning to pre-pandemic normalcy is a false goal, arguing that the pandemic revealed how accommodations became available only when nondisabled people were inconvenienced.

The "Future" section looks both backward and forward. Wong memorializes her friend Stacey Park Milbern, a disabled activist who died on May 19, 2020, and describes the pain of protecting Stacey's legacy from performative allyship. In a speculative talk set in 2029, Wong imagines a fictional Disabled Oracle Society confronting the threat of commercial human gene editing, framing eugenics as an ongoing existential threat. She outlines a vision for future care infrastructure that is free, fully funded, portable, and designed by disabled people. She writes a speculative obituary set in 2070, imagining herself dying at 96 after founding a disability-centered publishing imprint and witnessing the abolition of carceral institutions—confinement-based facilities such as nursing homes, psychiatric hospitals, and prisons.

The memoir closes with Wong returning to her first-grade teacher, Dixie Shrock, who held her hand and walked at her pace while the class followed behind. In a 2020 letter, Mrs. Shrock recalls that six-year-old Alice once asked whether she was going to die, and Mrs. Shrock assured her she was not. Wong frames this exchange as evidence that key people opened the door to her future. The book ends with an imagined dialogue between Wong at 6, 48, and 96, reflecting on the improbability and wonder of her survival.