Alice Wong

By: Afsana Islam

Alice Wong was born in Indianapolis to immigrant parents Bobby and Henry Wong from Hong Kong on March 27, 1974. She was the eldest of three daughters, a writer, editor, organizer, and one of the fiercest disability-rights activists to date. Her work is instrumental in advocacy and imbues the movement with a sense of radical love, anger and humanity.

At the age of two, she was diagnosed with spinal muscular atrophy Type II, a genetic disease that involves the loss of nerve cells called motor neurons in the spinal cord, causing severe muscle weakness and wasting [1]. As her muscles weakened, she was forced to stop walking at the age of eight. This led to the reliance on a motorized wheelchair, eventually an assistive ventilator machine, and, towards the end of her life at the age of forty-eight, a text-to-speech app to communicate. At the age of twelve, Wong was advised by doctors to undergo spinal fusion surgery, an intensely painful and invasive process that would improve her breathing and fatigue. It was two years later, towards the final window of the surgery, that she yielded to the doctor's requests. She insists that she has no regrets about waiting and is forever grateful that her parents afforded her autonomy to choose. This marks when she became, as she described herself, a “cyborg,” reclaiming the machines that helped her live, not as obscene obstructions, but as a diverse part of her identity [2]. This gives a glimpse into the inherent pride that her activism is rooted in, juxtaposing the historical notion of equating disability to tragedy. However, at the time, she had not developed this sense of security with her identity. 

Her early experience in Indiana had an instrumental impact on her work. She attended Carmel High School, which she described as a “hell hole” in her memoir, Year of the Tiger: An Activist's Life. It was a place that she “was so eager to leave,” due to the inaccessibility, exclusion, and discrimination as she discussed in a 2020 interview with WNYC’s Death, Sex and Money podcast. Riddled with the aches and woes of being a teenager, exacerbated by the internalized racism and ableism instilled in her, Wong said that those moments enabled her to get in touch with her rage at an early age, which she says has served her well [3]. It was in response to such arduous conditions that her journey in literature and advocacy ensued. In one of her first public displays of activism, she spoke at her school’s board meeting in 1991, demanding better accessibility at the high school. Her school had a literary magazine named The Prerogative, where one could find her poetry, making it some of her first published work. Though she was unable to retrieve copies of her work at the time, she shared lines from her poem that had not left her memory:

I have a tube that feeds me

I have a tube that breathes me

Beeeeeep! 

She cringes at her own macabre displays of emotion as a teenager, but applauds her younger self's intuition and prophetic foreshadowing of her theories and co-founding of The Society of Disabled Oracles. Editors at the time thought her work was too dark, but thanks to her friends, it was reinserted into the final proofs [4].

After her long-awaited graduation from high school, Wong attended Earlham College. However, she transferred to Indiana University-Purdue University Indianapolis (IUPUI), closer to her home in Indianapolis. This was following an episode of respiratory failure that was exacerbated by state cuts to Medicaid that increased her cost of care and made it inaccessible [5]. She graduated with a B.A. in English and Sociology in 1997. Her poetry served as a way to process and verbalize the trauma her and her body had endured. Thanks to a family friend, Wong had found two of her issues of The Fine Print, a college literary magazine from her years at Indiana University: 

Hooked Up Online (1995)

I have a tube that pees me

I have a tube that feeds me

I have a tube that breathes me

fluids dripping while others

swim in a raging torrent

urgently delivering goods

importing necessities

exporting wastes along these

worn down roads

no orifice left

un plugged

all functions hygienically

maintained

plastic wrapping

hermetically sealed

plastic straws

stick

rub

itch

the skin

sweat and dirt builds up around

the point of insertion

with a mound of ragged stained bandages

gauze and tape securing

the connections down

despite the incessant mosquito bite itch

tube upon tube,

intricate byways that laugh at nature

interconnecting, overlapping

the interstate of my body

*

Time Restrained (1996)

a fiberglass corset

a hull with

foam padding

the brace was constructed to slow the curvature of the bones

pressure on the structure

weakens the stature

like the one for that lady in new york 

hers was made of iron and steel

to hold up her bulk

even she had problems with posture

old men surrounding her in

her underwear

applying plaster and

creating a mold of a girl aged nine

now you won’t waddle like a duck

they said

when the orthotist presented her with this

new appliance

now you’ll need to wear this every day

so it can hold you up

and give you balance

it’ll be part of your normal routine in no time

in no time

encased in this insulated shell

is a soft mass of flesh

atrophied and decaying with

pockets of larvae wriggling for space

yearning to breathe

as the girl goes to school and sits

under the hot sun during recess [6]

Her morbid curiosity with her own health defines how she conveyed her lived experiences. There was a beauty to her fate, not just tragedy, that Wong captured in her writing. Gothic descriptions of her medical procedures and the aches and pains that remained leave the reader's skin prickling and squeamish. In her essay for Time, she wrote that “Death remains my intimate shadow partner” who she will “waltz together into the ether” when the time comes [7]. Mary Shelley had Frankenstein, Alice Wong had cyborgs and oracles. 

At the age of eighteen, unknown to her at the time, Wong developed severe sleep apnea. This led to respiratory failure and her hospitalization, where the medical staff attempted to intubate her. Wong luckily had the ability to not consent and opt for a bi-pap instead as a less invasive option. Following this incident, she started seeing a pneumologist who advised her to have a tracheostomy done. Wong responded with concern, wanting to stay with the bi-pap as it was a less invasive method that was already successful. In response, the male doctor assumed that Wong's concern is grounded in “vanity” since she is “a young woman who’s concerned with how they [she] look” [8]. As if the prospect of a tube in the throat was not enough cause for concern, it is coupled with the fear of infection and dependency on a device with batteries. This instance she recalls highlights the intersections of medical racism, misogyny, and ableism she experienced  that informed her activism. 

Simple annual procedures, such as getting weighed and pelvic exams, were inaccessible. Out of the eight available exam rooms at her doctor's office, not one had a height-adjustable table. A height-adjustable table meant that exams would require much less lifting and fussing for Wong to sit on the table. Fortunately, the clinic upstairs had one requiring her to go to another facility for one test result. Similarly, there was no wheelchair-accessible scale at her pediatrician, so she was not weighed until around fifteen years of age. She found it ironic that, eventually, when there was a scale that was accessible, it was a Hoyer lift. Not one where a wheelchair can be rolled onto it independently, but where the individual has to be transferred to a sling [9].

During her undergraduate studies, she learned about the independent living movement in Berkley, California, and was exposed to the work of Paul Longmore, a disabled activist, San Francisco State University professor, and historian. He encouraged her to move to the West Coast and she enrolled in the University of California, San Francisco (UCSF), where she earned a Master's in Science in Medical Sociology in 2004. As a graduate student, she chaired the Disability Interest Group, an organization that sought more participation with people with disabilities in all aspects of the University [10].

Once she graduated, Wong worked as a Staff Research Associate at UCSF for over a decade. She participated in qualitative research projects and co-authored the digital curricula of UCSF's Community Living Policy Center. She also extended her research to personal care services for those with disabilities in the larger community. She served as Vice Chair of the UCSF Chancellor's Advisory Committee on Disability issues, as well as on the San Francisco In-Home Supportive Services Public Authority boards and Asian and Pacific Islanders with Disabilities of California. While in the position, Wong advocated for UCSF's professional schools to include a disability-related curriculum in their cultural competency courses. Not only that, she led the creation of UCSF's Access, a website highlighting the accessible features of all significant campus buildings. Amongst this, Wong fought for other accommodations on campus, such as wheelchair-accessible buttons on the elevators and text telephones for deaf learners [11]. 

In 2013, President Obama appointed Alice Wong to the National Council on Disability, where she served until 2015. This independent federal agency advises the US government on programs, practices, and policies that influence the quality of living for people with disabilities. She attended a White House reception for the 25th anniversary of the Americans with Disabilities Act in 2015 through a telepresence robot. She was the first person to visit the White House and a U.S. President – in this case, Barack Obama – via a robot [12]. In 2014, Wong started the Disability Visibility Project, initially a partnership with Story Corps. Wong had struggled with representation as a woman of color with disability, so she aimed to create it herself. Eventually, this became a published anthology called Disability Visibility: First-Person Stories from the Twenty-First Century in 2020. 

Wong led an active life, collaborating on several disability access initiatives, including DisabledWriters.com, which connects editors with disabled writers and journalists. Wong also contributed to projects like #CripLit with Nicola Griffith, the non-partisan hashtag forum for disabled writers, the #CripTheVote campaign promoting political participation among people with disabilities, and Access in Love, which frames disability as an act of love rather than a burden. She was also a board member of 18 Million Rising and Disability Rights Education & Defense Fund (DREDF). Wong was named one of 16 notable people fighting for equality in America by Time in 2020. She was featured on the September cover of British Vogue under the theme "The Faces of Hope" and wrote for Teen Vogue on voter suppression faced by those with disabilities during 2020 from Covid-19. Wong was named a Disability Futures Fellow by the Ford Foundation and the Andrew W. Mellon Foundation as well [13].

Wong received numerous honors in recognition of her advocacy work. In 2007, she was awarded the Martin Luther King, Jr. Award. She later received the Beacon Award from the San Francisco Mayor's Disability Council in 2010 and the Chancellor's Disability Service Award from UCSF in 2011. In 2016, the American Association of People with Disabilities presented her with the Paul G. Hearne Leadership Award for her work with the Disability Visibility Project. She was honored with the Indiana University Bicentennial Medal in 2020, and in 2024, she received a MacArthur Fellowship.

At the time of her death, Wong was being profiled as part of The Washington Post’s “Post Next 50,” which lists individuals who are shaping society in 2026 [14]. Well into her last moments of life, she wrote. Her most recent work is a collection of first-person stories, Disability Intimacy: Essays on Love, Care, and Desire. She truly lived by the fact that storytelling is proof that we were here. Her work has always been rooted in the intersections of our experiences as disabled people, and she is aware that care for the collective is the end goal. One of her final projects was Crips for eSims for Gaza, which she co-founded with writers Jane Shi and Leah Lakshmi Piepzna-Samarasinha. They raised over $3 million to help connect people living in Gaza to the Internet and the rest of the world [15]. 

Wong was taken from us by infection on November 14th, 2025, at the UCSF Hospital. Her parting words were delivered by Wong’s friend Sandy Ho, per Wong’s wishes. The post reads, “Hi everyone, it looks like I ran out of time. I have so many dreams that I wanted to fulfill and plans to create new stories for you. There are a few in progress that might come to fruition in a few years if things work out. I did not ever imagine I would live to this age and end up a writer, editor, activist, and more. As a kid riddled with insecurity and internalized ableism, I could not see a path forward. It was thanks to friendships and some great teachers who believed in me that I was able to fight my way out of miserable situations into a place where I finally felt comfortable in my skin. We need more stories about us and our culture. You all, we all, deserve the everything and more in such a hostile, ableist environment. Our wisdom is incisive and unflinching. I'm honored to be your ancestor and believe disabled oracles like us will light the way to the future. Don't let the bastards grind you down. I love you all" [16]. 

Alice Wong spent her waking moments telling her story in hopes that others would see themselves in her work. In between her time spent advocating, storytelling, and community building she was a foodie who loved cooking. She is survived by both her parents, her two younger sisters Emily and Grace Wong, and her two cats Bert and Ernie. Her wit and candor captured the hearts of millions, and her legacy will inform generations of fervent advocates.

References 

[1] Muscular dystrophy association. (2018, August 2). Spinal Muscular Atrophy | Muscular Dystrophy Association. Muscular Dystrophy Association; Muscular Dystrophy Association. https://www.mda.org/disease/spinal-muscular-atrophy

[2] ucp-sarah. (2025, November 17). Remembering Alice Wong: Disability Advocate and Changemaker - United Cerebral Palsy. United Cerebral Palsy. https://ucp.org/remembering-alice-wong-disability-advocate-and-changemaker/

[3] Long, K. (2025, December 3). How Alice Wong’s life in Indiana shaped her work as a disability-rights activist. WFYI Public Media; WFYI. https://www.wfyi.org/news/articles/how-alice-wongs-life-in-indiana-shaped-her-work-as-a-disability-rights-activist

[4]Wong, A. (2022). Year of the Tiger (pp. 95–96). Vintage.

[5] Hernandez, Angie Orellana, and Erica Werner. “Alice Wong, Disability Rights Advocate and Wordsmith, Dies at 51.” The Washington Post, 16 Nov. 2025, www.washingtonpost.com/obituaries/2025/11/15/disability-activist-alice-wong/. Accessed 17 Feb. 2026. 

[6] Wong, A. (2022). Year of the Tiger (pp. 103–108). Vintage.

[7] Wong, A. (2024, March 27). Living With Muscular Dystrophy Makes Death My Shadow Partner. TIME. https://time.com/6960765/alice-wong-muscular-dystrophy-essay/

[8]dredf. (2025, November 18). In Memory of Alice Wong (1974 - 2025) - DREDF. DREDF. https://dredf.org/in-memory-of-alice-wong-1974-2025/

[9] Ibid 

[10] A review of the incredible life of Alice Wong. (2025). Rosariumhealth.com. https://www.rosariumhealth.com/blog/a-review-of-the-incredible-life-of-alice-wong

[11] Ibid

[12] Veltman, C. (2025, November 15). Disability rights activist and author Alice Wong dies at 51. NPR. https://www.npr.org/2025/11/15/nx-s1-5609903/disability-rights-activist-author-alice-wong-dies-51

[13] A review of the incredible life of Alice Wong. (2025). Rosariumhealth.com. https://www.rosariumhealth.com/blog/a-review-of-the-incredible-life-of-alice-wong

[14] Hernandez, Angie Orellana, and Erica Werner. “Alice Wong, Disability Rights Advocate and Wordsmith, Dies at 51.” The Washington Post, 16 Nov. 2025, www.washingtonpost.com/obituaries/2025/11/15/disability-activist-alice-wong/. Accessed 17 Feb. 2026. 

[15] Luterman, S. (2025, November 17). Alice Wong, disability justice advocate and author, dies at 51. The 19th. https://19thnews.org/2025/11/alice-wong-disability-justice-advocate-author-dies/

[16] Marke Bieschke. (2025, November 15). Quotation of Alice Wong’s final message shared on Instagram [News article excerpt]. 48 Hills. Retrieved from https://48hills.org/2025/11/disability-activist-and-oracle-alice-wong-passes-away-at-51/