A Tribute to an Oracle, Alice Wong

Has Alice Wong in the spring of 2010. I oversaw diversity and inclusion efforts in the Obama administration, and the White House hosted a video competition for Asian American and Pacific Islander Heritage Month. People from all over the country sent President Obama videos sharing what they thought he needed to know about the Asian American experience. My colleague Gautam Raghavan curated this and received a huge number of videos to watch, so he asked around to see if anyone would volunteer to watch them. I happily took the stack and one afternoon, having collected the lists of candidates for political office, I began to look through them.

In my stack was a video from Alice Wong. She spoke about the stigma of bringing home care workers into her family's very traditional Chinese household in San Francisco. Living with muscular dystrophy, Alice explained how outside help made her feel uncomfortable and at the same time made her more independent, and that more people like her need access to high-quality home and community services, rather than being forced into care homes against their will.

She was about to turn 40, only a few years older than me, and the fact that she was afraid of the possibility of institutionalization angered me. The way she described the mystery she faced was both informative and moving, and it made me angry that I was sitting in the White House while Alice had to fight just to live in her community.

I immediately picked up the phone and called her to tell her that the video she presented had amazed me and to ask her permission to share it. I also asked her if she would be interested in serving in National Council on Disabilityif we could find a way to make it work given her inability to travel.

That was the energy of Obama's first term: If we could figure out how to do hard things, we would do them. And so during the remaining Obama years we found ways to redesign the table during Council meetings to make it work for Alice and other people for whom travel was a problem, and thanks to Maria Towne we ensured that Alice managed to meet President Obama via iBOT at the Americans with Disabilities Act celebration. I'll never forget turning the corner and seeing our “Robot Master” Alice Wong circling the East Wing.

Alice's contributions to federal policy included everything from the need to strengthen existing policies such as the Americans with Disabilities Act and the right to access home and public services, to accessible currency and the right to higher education.

Alice constantly observed what people were doing and encouraged people whose work she felt deserved attention and dissemination. This was the basis of creation Disability Visibility Project. Alice was the first person to recognize my work as part of the “Visibility of Disability: The People We Love” That this recognition comes from someone I respected and loved as much as Alice still means so much.

Alice loved science fiction. We jerked off X-Files, FringeAnd Orphan Black. She began using the word “Sister” to describe the women in our circle of friends. We talked about how disability either did or didn't exist in these spaces. This was part of Alice's ability to see into the future and into a world where laws and attitudes did not leave people with disabilities poor, miserable and isolated.

When Covid-19 hit, frankly, none of us in our company were surprised. Alice wasn't kidding when she took on the Oracle title, as many in our friend group predicted bad things were on the horizon when we noticed that the first major industry to face deregulation after the 2016 election was the nursing home industry, specifically its work on infection control standards. Her opposition to wearing masks and vaccines did not change and continued until the day she died. Her piece is in Teenage fashion in January 2024″Covid is here to stay, masking up could save my lifeIt was our duty to each other, regardless of the tendency of the federal, state, and local governments to abdicate any authority.

But 2020 was a monumental year for the disability community in terms of redefining our place in our democracy as the pandemic hit and political campaigning went virtual. CNN's Jake Tapper discussed #CripTheVote, which was founded in 2016 by Alice and fellow disability rights activists Andrew Pulrang and Gregg Beratran. #CripTheVote is an online movement, primarily on Twitter, that focuses on discussing issues that matter to people with disabilities and highlighting how the community is participating in our democracy. Over the years, the founders organized debates, State of the Union watch parties, and Twitter town halls for three presidential campaigns, allowing people with disabilities to interact directly with candidates. In response to this organization, the 2020 campaign season included debate questions that mentioned the disability community for the first time, and candidates went so far as to reframe non-disability issues in ways that emphasized the impact on people with disabilities and their families.

When Alice was given the award MacArthur Fellowship in 2024, we were so excited, and at the same time, those of us who knew her understood how difficult it was to have her work recognized. This award, which was more than deserved for a man who had demonstrated “exceptional creativity, a demonstrated record of significant achievement and a clear promise of important future achievements,” meant that our friend could live a little longer in society. That didn't mean she could bask in the sun on Lake Como while pitching the film of her life to George Clooney. This meant she could pay someone to get the support she needed to perform basic functions such as eating, dressing and using the toilet. I often wonder what her communication might have looked like if these basic needs had already been met at the level and quality she needed.

Despite the enormous honor, the scholarship has sparked a new wave of online attacks against Alice, particularly for her support of the Gaza Strip. But she never refused. Anyway, she did what she was inclined to do and doubled down. Her work on “E-Sims for Gaza” with Jane Shea and Leah Lakshmi Piepzna-Samarasinha was very important in her efforts to coordinate the efforts of people with disabilities around the world to support people in Gaza who have lost access to the Internet due to the war.

It was incredibly powerful to see the impact her life had on people around the world.

In many ways, Alice Wong was the first public intellectual with a disability, and this “public” article was not necessarily something the disability community was ready for. Over time, people who didn't even know Alice decided that they knew best what she wanted, what was important to her, and took it upon themselves to speak for her. Alice, who had fought for so long for her right to bodily autonomy, was attacked by the very people in her community she was fighting for. When she died on November 14, she left a legacy for all of us to carry on.

As the administration flirts with the idea of ​​returning to institutions, we need people without disabilities and their allies to speak out and say Medicaid cuts are unacceptable. Available bursaries are not enough to keep all people with disabilities out of care homes, and people with disabilities should not be expected to have to do a lot of work to access care. Medicaid needs to be strengthened and reformed so that people who depend on these programs for their very survival, people like Alice and many others, can get the support they need. This includes supporting home- and community-based services to ensure that people with disabilities have what they need economically to not only survive, but thrive. GoFundMe cannot be the answer to absurd Medicaid cuts.

American systems, structures and policies were not prepared for Alice Wong. I dream of a world where her views on disability rights are not “radical” but the norm.