“I'm honored to be your ancestor”

Dear Debriefers,

With a heavy heart I join the disability community in mourning Alice Wong, who passed away last Friday, age 51.

Alice was a disabled Asian American activist who had a profound role in creating twenty-first century disability culture. She used a mastery of digital media to make a fundamental shift in the way disabled stories are told.

I only had a few limited interactions with Alice, short emails congratulating her on her latest projects, or, to my joy, her note on subscribing to the Debrief.

Mainly I knew her through her writing: searing, playful, sexy and fierce. Her words change the way I see myself and our future. In this article I'll share the ones that touched me most.

For a memorial of Alice from friends and close collaborators of hers, see Alice Wong was Crips for eSims for Gaza, and Everything to Us by Jane Shi and Leah Lakshmi Piepzna-Samarasinha.

About this edition

Disability Debrief can cover disability news thanks to support from readers.

Peter Torres Fremlin is editor of Disability Debrief and is from the UK.

Kinanty Andini is an illustrator and digital artist from Indonesia.

“The disabled angels sang”

Alice's parents emigrated from Hong Kong to the United States in 1972. She was born in 1974, in Indianapolis, Indiana, the oldest of three daughters.

By around age two she was diagnosed with a form of muscular dystrophy, the doctor telling her parents that she would not live past eighteen years old.

As she grew up her mobility evolved, she used a walker, and then aged seven a manual wheelchair. That soon led to her first electric wheelchair. Writing later in her memoir, Year of the Tiger, she describes the moment:

“The clouds parted, the disabled angels sang, and I took my rightful place on my motorized throne. It was total liberation: I was in a comfortable position and, most important, in control. [...] I could express myself through movement for the first time.”

Growing up in the 1970s and 1980s United States, she benefitted from a supportive family and community, but not from the accessibility measures or non-discrimination provisions that would be widespread today:

“I can say I had a happy childhood with lots of friends and family support. However, when I look at old photos or reminisce with my sisters, I remember numerous moments of anger and frustration. In large part, having a disability from birth that progressively became more severe impacted my childhood experiences profoundly. Changes in my mobility radically affected my relationships with people and the built environment. At different stages those changes separated me from others.” (Year of the Tiger)

And in her teenage years she also had a six-week stay in intensive care for a spinal fusion surgery: “to say this was a period of incredible pain is an understatement”. Coming out of hospital:

“I had to adapt or die. There was metal inside the core frame of my spine and additional attachments to my external humanoid shell at age fourteen. I had to figure shit out. And there would be more difficult shit to figure out in my twenties, thirties, and forties.” (Year of the Tiger)

Opportunities in California

Alice started as an undergraduate, at Earlham College, a private liberal arts college in Indiana, her “dream school”. However, her health, care needs, and cuts to Medicaid meant she had to return home. She completed her undergraduate degree from Indiana University through correspondence courses:

“The main thing was feeling incredibly jealous of my friends who were living a traditional campus life. It turned out well, in the sense that it gave me time to recoup and to think. During my undergrad years, that is when I really understood more about policies and programs and different opportunities. I read about California and how there were a lot more opportunities and availability of services.” (Year of the Tiger)

Graduate school was the way to get there and she got into University of California San Francisco in 1997 and “never looked back”. While she did not finish her doctorate, she received a Masters degree and continued at the university as a staff research associate at the university's the Center for Personal Assistance Services.

Moving to San Francisco took Alice to one of the birthplaces of disability rights and the independent living movements in the United States. Subsequently it was also the home of the disability justice movement. Alice would go on to share these histories, politics and people with the wider world.

“What is your story?”

Alice founded Disability Visibility Project in 2014. It was originally imagined as a one-year project sharing stories of disabled people.

But, continuing till today, it became perhaps the most important collection of contemporary disability stories and politics online. It features hundreds of guest essays, interviews and blogposts sharing an incredible range of (primarily US) disability activists and thinkers.

Alice dedicated herself to creating platforms to share the work and stories of disabled people. From the website came a podcast and several books, including Disability Visibility, a collection of essays.

Alice's work expanded the possibilities for what disability stories can be, the diversity of those given a platform to tell them, and the audiences they reached. Plus her editorial choices routinely gave space to radical and disruptive politics not given space by mainstream disability organisations.

Disabled storytelling is a way to change ourselves, and the world:

“I think of storytelling as a chance to know ourselves better, to really question who we are, where we’ve been, and who we want to be. Each person has an entire universe of stories inside of us. So my question to you all is, what is your story, and how do you want to share it with the world? If you aren’t ready to share, tell your stories to yourself and let it nourish and guide you. Most importantly, your stories should please you and you alone. And when you are ready to share it, it’ll be out there with other disabled narratives, pushing back at the status quo.” (Year of the Tiger)

“A full-time activist occupation”

Alice was an activist, first by necessity, and then by lifelong dedication:

“I was an accidental activist for the mere fact that I live in a nondisabled world, and surviving in it is a full-time activist occupation” (HuffPost)

Her activism spanned across writing, extensive tweeting, hashtags, memes, organising and campaigning. She was a co-partner in campaigns to promote disabled literature and writing, participation in politics (#CripTheVote), or to show Access is Love:

“Activism comes in all forms. For me, it starts with staying alive, building community, and telling my story. Activism is practice grounded in love.” (Teen Vogue)

Alongside her own campaigning, Alice was always amplifying and supporting the work of others. The way she shared and supported the Debrief is one small example among many of the thousands of efforts that she profiled, disseminated or supported. As she shared in her notes on “activist wisdom”:

“Credit and shout-out people as often as possible. Be enthusiastic and loud about the people you love and those who are doing the work!” (Year of the Tiger)

Disabled rage

As well as love, a key motivator for Alice was anger and disabled rage:

“Disabled outrage is necessary and liberatory; it reveals the fissures in society and the consequences of structural oppression. It comes from a place of hurt and injustice. It is resistance against erasure.” (Disability Visibility Project)

As she wrote in a letter to Asian American disabled women and girls, she encouraged others to push back on the way disability activism can be narrowly conceived:

“Do not feel obligated to represent or speak on diversity, intersectionality, or identity. There will be people out there who see you only in those narrow terms. Those are not your people no matter how nice and ‘helpful’ they seem. You can talk and think about disability however you want, especially the uncomfortable, difficult, shameful, messy stuff. Fuck the rules. Fuck the model minority myth and respectability politics.” (Teen Vogue)

Activism for Alice wasn't supposed to be “palatable or convenient”:

“Change cannot occur without friction in resistance to systems and institutions centered on accruing power.” (Disability Visibility Project)

“So-called good allies”

I write this piece as a white disabled man, and I'm conscious that some white disabled people were the cause of her anger. Alice was a frequent user of the #DisabilityTooWhite hashtag coined by Vilissa Thompson.

For example, in remembering Stacey Park Milbern, who passed in 2020, Alice saw performative posts and that “very few were taking a moment to pause and center those who knew Stacey best”:

“My disdain for the white disabled people who so badly wanted to be ‘allies’ with disabled people of color, who never understood Stacey’s politics or disability justice and never supported her work while she was alive, ignited a flame in me. As someone close to her but not within her trusted innermost circle, I wrote a remembrance, ‘Loving Stacey Park Milbern,’ that very day, because I wanted the public to recenter its attention on Stacey’s actual words and work. This was my small way of honoring her while telling these so-called good allies to back the fuck off.” (Year of the Tiger)

Pandemic and Palestine

Alice's activism continued to build intensely from 2020. Fighting against how public health policies in the pandemic saw disabled people as disposable, Alice campaigned particularly on use of masks.

The pandemic also showed Alice how disabled people's warnings were silenced. It led her to co-create the Society of Disabled Oracles:

“To be a disabled oracle is someone who tells their truths in a hostile ableist world that does not believe you. The pandemic reveals an attitude that disabled, sick, poor and immunocompromised people are disposable. Disabled people already know what it is like to not be believed by the medical establishment when they have a mysterious illness such as long Covid. Disabled people foresaw correctly the need to mask in spite of mask bans and the dangers from lack of masking in healthcare settings.” (The Guardian)

She also protested the genocide in Gaza. The Crips for eSims for Gaza campaign she collaborated on raised over two million dollars. As she wrote at the end of 2023, “Palestinian Liberation Is Disability Justice”:

“Perhaps it’s because I’m turning 50 in a few months and have become more politicized than ever, I no longer care what people think. When the attack by Hamas occurred on October 7th and the subsequent asymmetrical collective punishment of Palestinians by Israel, something changed in me. It was time to take action and speak out despite the risk because the risks Palestinians face just to live another hour is nothing compared to mine.” (Disability Visibility Project)

“Height of my powers”

The last few years saw a series of accolades celebrate Alice's work, including a character inspired by her in a Netflix animation and culminating in a 2024 MacArthur fellowship.

All this happened as her health went through serious crises, including a nightmarish stay in intensive care in the summer of 2022, a “descent into hell and back”. She came out with a tracheostomy and needing to use a text-to-speech app to communicate:

“I live in a world of silence that is not lesser or devoid of richness. My reality is just different. Silence forces me to be more thoughtful and intentional in considering what I want to say and how I say it when I type into my speech-to-text app.” (Teen Vogue)

Or, rather, the assistive technology was just one of the ways she communicated:

“I can still grin devilishly, roll my eyes sarcastically, and my personal favorite, give the middle finger.” (KQED)

By 2024, she observed that she had never expected to reach fifty years old, and how death had been an “intimate shadow partner”, having accompanied her since birth. And at the same time:

“Right now, as my body is at its lowest point, I am at the height of my powers. I have never been more happy, free, and resolute on what I want to do.” (Time)

“I still lust for pleasure”

Through the years, her writing gained increasing boldness and brilliance. There is so much more to quote and share, and I hope you find your own ways into her work, that reveals her love for cats, memes, and food:

“Snacking is good. Snacking often is better.” (Year of the Tiger)

Among the transformative contributions of Alice's writing are the ways she found to describe her physical experience:

“Time and biology shaped my body into a gnarled, knotty driftwood sculpture, marked by the elements and forces of nature into an abstract masterpiece. Joints contracted, muscles atrophied, sinews snipped and stretched to the brink. Great art comes at a great price.” (Year of the Tiger)

The essay of hers that marked me the most is her writing on Disability, pleasure and ageing for Archer magazine. It's a piece that changed the way I think of sex, pleasure, and how we take joy in our lives:

“Because of, not in spite of, the current status of my health, I still lust for pleasure. Hands stroking my thighs, fingers running through my hair, an arm wrapped around my waist. I want to touch, taste, feel everything. My twisted body writhing from delight rather than pain.” (Archer)

“I'm honored to be your ancestor”

As I've read and reread Alice in these past days, my heart has been heavy with her loss and at the same time uplifted by the light she cast onto the most challenging parts of our disabled experiences and fears.

I too have a type of muscular dystrophy, and she shows how things might change for me, how I can face that, and how I can find joy in it. I see the mess of my own body a bit better, the need for radical disability politics more urgently, and hear her reminders to play, snack, and love each other.

Alice's life and work bent time. From believing she didn't have a future, to the certainty that should shape a new one for all of us. She greets us from the past as an ancestor, from the present in the vividness of her writing, and from the future as an oracle.

In her farewell message that she left to share after she “ran out of time”, Alice said how she could never have imagined where she got to, and that:

“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.”

With love back to you, dear Alice,

Peter

More about Alice

Follow the links on this page to get to know Alice and her writing more! Her memoir, Year of the Tiger, is great to read for a collection of her own writing. The Disability Visibility Project website is a treasure-trove to explore, for Alice's own writing, her interviews, and those she profiled and the articles she edited.

Interviewing was a big component of Alice's work that goes beyond the scope of what I could share here. However there is one conversation that I find particularly memorable, applying a disability view to scientific exploration of the natural world: her conversation with Ed Yong on What Counts As Seeing.

There are already countless pieces in memory of Alice. DREDF has highlighted several of them. And Alice's family are fundraising to continue the legacy of her work.

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Acknowledgements

Thanks, first and foremost, to Alice. For everything.

Thanks to Kinanty Andini for a beautiful illustration of Alice, to Celestine Fraser for revisions, and Anne for reading a previous version.

Thanks to the readers and organisations whose support makes the Debrief possible. And to those who grieved Alice with me these past few days.