Doctors told Alice Wongs parents that she wouldnt live to adulthood. She was born with spinal muscular atrophy, a neuromuscular genetic disorder that gradually weakened her muscles. She stopped walking at around age seven, began using a power wheelchair, and eventually developed difficulties breathing, swallowing, or talking.But even though Wong passed away from sepsis last Friday at the age of 51, during her lifetime, she distinguished herself as a prolific queer disability justice advocate and author. Related My first hook-up called me a pity f**k. Disabled queers are so much more. She graduated with a double bachelors in English and sociology and a masters in medical sociology. She also founded the Disability Visibility Project (DVP) and the Disabled Writers project, two initiatives to help disabled people tell their own stories.Through the DVP, she built a media platform that included podcasts, videos, educational outreach, and collaboration efforts with other community organizations, and also published four essay collections from disabled writers. Never Miss a Beat Subscribe to our newsletter to stay ahead of the latest LGBTQ+ political news and insights. Subscribe to our Newsletter today Acknowledging that most mainstream conceptions of disabled people are largely created by able-bodied people, Wong noted, Disability is so much more than pain, trauma, and tragedy. Theres creativity, adaptation, and talent that come from living in a non-disabled world.As a writer and editor, I address the lack of disabled voices in publishing, journalism, and popular culture, and illustrate the systemic ableism that renders disabled people as disposable burdens and objects of pity, she said. Storytelling is a powerful form of resistance. It leaves evidence that we were here in a society that devalues, excludes, and eliminates us.Wongs writing and activism not only shed light upon the optimism and resilience she shared with other disabled people, but also revealed the many ways that societal ableism hides disabled people from public view, weakening understanding, empathy, and the chance for a more just world. In a 2024 interview with Bloomberg, Wong who was born in the U.S. to parents from Hong Kong noted that many states have biases in Medicaid funding that push people with disabilities into institutional settings rather than caring for them with community-based services that allow them to stay in mixed communities or with their families.Many people think skilled nursing facilities, assisted-living facilities, and nursing homes are safer because a person can get 24-hour care, but no one should be separated from society and hidden from the public, she told Bloomberg. And by the way, institutions are not necessarily safe. In fact, theyre rife with [mistreatment] and neglect, especially ones that are for profit, owned by private equity companies.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. I did not ever imagine I would live to this age and end up a writer, editor, activist, and more. Alice Wong in a final message published after her passingI would like to see a world where no one goes hungry and has housing, education, and health care, a world where bodily autonomy is respected, a world where communities and neighborhoods take care of one another, a world where disabled people arent siloed by diagnosis, a world where we can rest, dream, and create, she added.She served on President Barack Obamas National Council on Disability to advise the federal government on disability programs and, in 2015, attended a White House event commemorating the 25th anniversary of the Americans With Disabilities Act she attended virtually, using a video and camera display on a mobile device, becoming the first person ever to visit the White House using a virtual robot presence. She also published a 2022 memoir, Year of the Tiger: An Activists Life, cofounded a 2023 effort raising $3 million to fund phone and internet access for Palestinians, played a fictionalized version of herself in the 2023 season of the Netflix cartoon comedy Human Resources, and last year, was awarded a MacArthur genius grant fellowship. The systemic ableism that I and millions of us face every day tells us that we dont matter, that our lives are too expensive and not worth saving, she continued. I want to change the way people think about disability from something one-dimensional and negative to something more complex and nuanced. Theres such diversity, joy, and abundance in the lived disabled experience. We are multitudes.By telling my story and amplifying the stories of others, cultural change can happen, she added, and collectively, we can build a world centered on justice, access, and care.The year before she died, Wong for the first time in her life moved into her own apartment, with a dedicated office (rather than working from her bedroom, like she had for decades) and two cats, Bert and Ernie, who she called her chosen family.I know people pity me and cannot imagine living like me, but what I have achieved and lost made me who I am, and I dont take anything for granted, she said. Every moment with friends and family is a treasure, and I find joy amidst all the struggles and pain. View this post on Instagram A post shared by Disability Cultural Center (@disabilityculturalcenter)In her final message, shared online by her friend Sandy Ho, Wong wrote, 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, her message continued. We need more stories about us and our culture, she wrote. You all, we all, deserve everything and more in such a hostile, ableist environment. Our wisdom is incisive and unflinching. Im honored to be your ancestor and believe disabled oracles like us will light the way to the future. Dont let the bastards grind you down. I love you all.Subscribe to theLGBTQ Nation newsletterand be the first to know about the latest headlines shaping LGBTQ+ communities worldwide.