Episode 55: For Alice Wong

This is Aimi Hamraie. I’m back with a special episode of Contra*, a tribute to a dear friend and comrade, Alice Wong. 

Alice was a disabled oracle, an activist, community builder, archivist, fierce lover of animals and snacks, a companion to cats and snails, one of the funniest people I ever met, and one of the best at setting boundaries. She was involved in many of our projects in the Critical Design Lab, including being on several episodes of the Contra* podcast. She was also involved with our Remote Access Archive and party, the #CripRitual project and exhibition, Labs for Liberation, and, most notably, the Society of Disabled Oracles project, which she founded and which Jen White-Johnson and I worked with Alice to co-create. Alice and I first met in person years before the pandemic, but our relationship deepened since 2020. We collaborated on projects, hung out socially in virtual spaces, and sent snail mail, including a lot of stickers, gifts, and small snacks. Our ways of communicating changed as both of our bodyminds changed, and you may detect some of that in this episode. 

I am deep in grief. It’s been a hard week since Alice transitioned to becoming an ancestor. I have been writing to her and about her a lot. Given the immense archive of letters, recordings, and other things from Alice, I don’t actually believe she is gone. Perhaps just hanging out in another realm, watching or waiting to haunt us like a benevolent ghost. (Unless you were ever a representative of an evil ableist organization, in which case, the haunting may not be so benevolent). Alice and I were supposed to have a Zoom call the weekend that she passed, and as I sat down to write this introduction, my phone lit up with the event reminder in my calendar. A message from beyond. I look at Alice’s post cards, the one that says, “The world is so bleak and filled with grief, isn’t it? For me, it’s been healing to be around nature and cats, fish and plants. I went to the Oakland Museum, where there was an exhibit by disabled artists, and I was reminded of the power and beauty of creativity. And that’s something, isn’t it?” 

There is a card on my fridge, with a drawing by Alice. The text says, “sloth time is crip time,” and there are stickers of sloths: snacking, snoozing, and bathing. In the corner is a clock, it’s arms pointing to the words, “Later,” and “Nap.” This is Crip time. 

Many people have documented Alice’s significant contributions to our movements, especially through the Disability Visibility Project, #CriptheVote, her memorials to Stacey Park Milbern, her immense Palestine activism, and her advocacy for disabled people to access ventilators and vaccines during the earlier years of the ongoing COVID-19 pandemic. In this episode of Contra*, I want to do something a little different as a tribute to my friend. I want to share some of my memories of Alice, and also some of her insight and humor from previous Contra* episodes. 

Alice was gracious about accepting my invitations to be on Contra*. In our conversations, we were trying to articulate early arguments for crip technoscience, such as why non-disabled technologists and designers were so troubling, and what difference being a disabled designer makes. 

Here’s Alice talking about the genesis of the Disability Visibility Project back in 2018, on episode 4 of Contra*, an episode where we talked about crip hacking and tinkering, and Alice’s critiques of bringing in disabled users for design hack-a-thons: 

Alice: It was a year before the 25th anniversary of the Americans with Disabilities Act. And you know at that time, I realized, I noticed there were a lot of organizations, and just different disability communities planning to celebrating this huge landmark anniversary. And I was like, you know, I'm just one individual, and I thought, "Well, what could I do as a disabled person to contribute to this?"

And I didn't have an idea, and I'm a constant listener of Storycorps, which has these short audio stories every Friday on NPR's morning edition. And I realized that there was a Storycorps location in San Francisco at the time. And I attended one of their events. And they had like you know, former storytellers on stage and talk about the power of storytelling. And they mentioned that they have community partnerships, that are vocal partnerships. And then I just went up to them afterwards I said, "Hey do you realize like there's a huge disability community in the bay area? Have you worked with our community organizations yet?"

They're like, "No, not really." So the light bulb went off and I thought, "Well, maybe I could just you know, form a partnership with them." And initially it was just gonna a one-year campaign to encourage people with disabilities to tell their stories and to have it archived as part of Storycorps. You know, part of the impetus was to not only to help celebrate and have like a 25th anniversary, as ADA but I definitely brought it to think about how there's not enough disability history out there. And how it really is so important for us to tell our stories in our own words.

And I think the idea with Storycorps that was such a great partnership is that, you know, people feel really empowered. You know, it's very loose, it's very intimate. There are no rules on like telling your story. And the brilliant part that really encouraged me to do this is that, having participate after their oral history, it has the option of archiving it at the Library of Congress. So to me that's just like, wow you know, I thought if I could get 25, 50, oral histories in a year, that's something that's gonna be there forever. And I think it's so important to capture like a zeitgeist because we don't think about the history of our community right now.

Like you and me talking right now, this is disabilities history, this is disability culture. And we often don't see it that way it's not like, you know, years later. So I thought, What's an idea? I really didn't see enough disability history or media produced by us in a really robust way. So I thought, "Well what should I call it?" I thought, "Oh disability visability is a mouthfull but it rhymes." And I thought, "Oh yeah let's just do that.”

Aimi: One thing I loved about Alice was that she was always leaving traces of disability culture for future people (maybe activists or historians) to notice. She was aware that we were part of history in the making, and marked this whenever possible. She was also frequently using the language of partnership, to establish the power dynamics of a collaboration. On the Society for Disabled Oracles project, for example, she explained to Jen and myself that we were “co-partners,” and sought to nurture collaborations with and through us with our other collaborators, as part of the broader web of disability culture. She used any resources she had, whether money or time or love, to nurture the many tendrils of our networks. As she writes in her memoir, Year of the Tiger, “The real gift any person can give is a web of connective tissue. If we love fiercely, our ancestors live among and speak to us through these incandescent filaments glowing from the warmth of memories.”

Here’s Alice discussing how she benefitted from the wisdom of disabled women elders and mentors, from the same episode. 

Alice: I think I owe a lot to the generations disabled women who've really just been, shared so much of theirselves and their lives with me. That it just made feel so welcome when I first moved out here to the bay area about 20 years ago. You know, they were the ones that were really that I [inaudible 00:27:41] of. Like this is, you know, part of us and I'm just like, "Wow," you know? Yet, Corbett I think in particular of us, somebody who just had this like kind of no-nonsense bad-ass style.

That really a way and I guess I was just a baby Crip you know? Get the diapers, just you know starry-eyed, and just trying to find community really. And she was one of the ones that like, "Oh yeah, you want to do this? Let's do this." You know, she's made everything seem possible. And that just you know, I will always feel like that's kind of she gave so much to so many. And it really made me think about like my own kind of responsibilities. And you know, that paying it forward as well.

So I do want to acknowledge the elders in our society that just inhabit so much wisdom that I feel like, you know, so much of that wisdom is just unless they write a book, or unless they tell their stories, it's like such anxiety that's like we're gonna lose this history. And that we need to tell our stories, because I think that sometimes the other thing about storytelling is that we don't realize what we've achieved, right? Sometimes we do things, you know, informally to our lives to make our lives better but just the little hacks and adaptations.

We don't think of it that way, we just think of it as just living our lives. And always, you know, later on upon reflection or upon somebody else's observations. Wow then we realize, "Oh my gosh. Like, I guess that wasn't safe," right? And I think we need to keep saying that these are things. And I think that's, you know, hopefully one of the reasons why you know the Disability Visibility Project exists. This is it, these are things that we should immensely proud about and just you know, embrace.

And just think about this is just the few examples that are our stories. And just perhaps you're like all of your other stories that we just don't know about yet. And that to me is incredibly exciting, the fact that this is just a small sampling that you know, I'm able to have access to in terms of being able to tell their stories. But this is really just an entry into this larger universe, this Crip universe. This Crip Technoscience universe that we're all participates in. And that to me just keeps me going.

Aimi: One of the ways that Alice and I connected was through design criticism. She had, for many years, been a critic of how designers pretend to include disabled people, while also excluding disabled wisdom from design processes. One of the many areas where Alice and others had to exert extra energy to advocate on behalf of different design solutions was the straw bans, which had taken shape in 2018 across the U.S. and many other places. It was something that non-disabled people found of minimal importance, but Alice was not willing to back down. This is from Contra* episode 5, also in 2018. 

Alice: People that I see on Twitter who are disabled this past summer, they're being honest about plastic straws, and usage of products. Non-disabled people were just attacking them right and left! Just questioning their existence! I saw people say shit like "Don't worry about the plastic ban, because you can just bring your own," or that people are gonna be okay, people will make exceptions. If disabled people don't... it is already so hard to just exist in public spaces without any kind of intimidation or skepticism or microagressions -- the sense that we're always "faking it" or trying to get... that we're scammers, we're just trying to get some kind of special privileges, which is really accommodations... the sense that we're always gonna be still under surveillance, and we're always gonna be at the mercy of people who feel entitled to question what we need.

I think that's the thing that really alarmed me about these straw bans, is the cultural message that's coming out, is that your bodymind, your way of functioning is not socially appropriate. It's not socially... environmentally responsible, therefore you must acquiesce and perform to what this... this new way of being because the greater good of saving the planet is more important than the way you survive. And that, to me, I think is the most disturbing, it's very much of a threat on our way of life, and on our right to be in public.

It's not an exaggeration, in my mind, to think about the parallels of straw... bans like this, like straw bans, and things like the Ugly laws, because it's really about disciplining certain behaviors and certain activities in public. It's really not an exaggeration to think about the way we live is... in a way repulsive, is not attractive, is not "healthy." Our needs are asking for too much, that it would be unreasonable, that it would be wasteful. Those are all the kind of moral or value things that are all placed on plastic, and plastic wasn't seen that way in the past. And I understand the need to reduce consumption, but I find it just... it's such an easy thing to place this responsibility on the individual versus the larger forces at play that really are the ones that really drive plastic pollution. That's a lot more difficult for governments and corporations to tackle. They don't want to think about voluntary systemic changes versus changing individual behavior.

Aimi: In addition to moral and political arguments, Alice was concerned with how people with power, such as city officials or corporations, did or did not respond to community feedback. This is a bit of a glimpse into Alice’s activism on the ground. 

Alice: I think the idea at least if tinkering the ideas, I think the amendments in terms of getting involved with political participation and making sure that we tinker with their draft amendments, I think that's definitely what I would do as well. I've observed, and I've also participated in... we had this motto of "nothing about us without us," and these straw bans are a great example of the opposite of that. These things were done totally without us, yet they were about us, and you see how not only governments but also other corporation or entities are playing catch-up, right? They're like, "oh, okay, we see all these crips are really upset, what do we do? Okay, we'll just have these community forums, we'll get their feedback, and we're gonna do a do-over."

So in San Francisco, there was an ordinance passed very recently this year that thanks a lot of people on a local level that said "hey, hold on, hold up, this is not cool, you're... the language of your ordinance is incredibly vague. Are there exceptions?" So they're like, okay. So they held two community stakeholder meetings and they also shared, after those meetings, a draft amendment, and we were also able to give feedback, so I think that, in a sense, was where the tinkering took place.

Aimi: Like her criticism of maker and hacker events, which she had been developing since 2014, Alice noticed that disabled people who gave feedback in political processes weren’t credited or paid, which was a huge injustice:  

Alice: In the end, our names are never gonna be associated with that process. Just like the straw ban, that's... it's the straw ban, none of our names of the people of the people that actually helped improved the amendments will ever be credited with it, because it's really about the politicians who sponsor those bills, that put those bills into action. Again, this is where, time and time again, marginalized communities are the ones with the vision and the foresight to say, "hey, this is not cool," and they're the ones with the burden of educating people. This happens time and ...opportunity, and I think that's another layer of ideas about our experience is not the same as expertise, or that our expertise is just not seen within a professional context.

And I think that's what's really... I can't just... We need your help, but we're not going to pay you or we're not going to credit you in the end, and yet so many of us do this because, if we don't, the end result is... we have to do something, right? And sometimes there's a real tension or market, like a trade-offs. Like I don't want there to be here talking about plastic straws. I did not want to do this at all this summer, and yet here I am doing this, and I do this because I felt we had to do this, because otherwise we're gonna let non-disabled people have total control over it, and that's worse, to me, the fact that, if we just receive any sort of ownership of it, I think that that's part of the inherent power dynamics, is that though we are assisting on a role with this, in a way that our contributions may not be recognized, but in the end, this is for us. This is for our future. This will have an impact, whether we get credited or not. And I think that's what people do when they have love with their communities, have love for their people, right?

Aimi: And that brings us to some of the ideas that later formed Alice’s concept of the disabled oracle, a figure who predicts the future, however dire, and survives through hope and solidarity: 

Alice: And I think, you know, again, just like... the no matter what type of dystopian future or present we're living in. One thing that's always gonna be constant throughout is that we're always gonna be tinkering, no matter what happens, no matter how shitty things get. Within the most oppressive climates, one thing that's so beautiful and so... I guess I don't want to say miraculous but so [inaudible 00:40:59] that we are always gonna be on the edges, we are always gonna be the ones who really see things way before other people see things, because we live on the intersections and we live on the margins, and I think those who are on the outside, on the edges, are always the ones who see things in the future and the consequences that most people in the center have no ideas about. So that's ... no matter how pessimistic, sometimes, I am, or skeptical about the future, I think it gives me hope that I know that within the most dire of circumstances, disabled people are always finding ways to survive and thrive. Not just survive but thrive as well. So, yeah, that gives me hope.

Aimi: Yeah. And I'll just shout out the Disability Visibility Project's anthology, "Resistance and Hope," which is amazing and exists in an audio format on the website as well.

Alice: For that, yeah, I think that's the twin ideas of resistance and activism, but also this idea that, no matter how bleak things seem, the reason why we keep doing things, is because we do this in the hope of a better future, and we do this out of love. And I think that's what really carries us forward as a people, that we do these things for the love of one another. And that's really powerful.

Aimi: Not long after recording these episodes, Alice invited me to join her for a presentation to a corporate accessibility office. We were being asked to do “disability 101,” but we chose to talk about disability culture–and disabled peoples’ expertise–instead. There was a big audience. A year later, the same corporation tried to roll back the ADA through the courts. We did a lot of laugh-crying about it all, not surprised, but a bit like, what are we going to do? What are going to keep doing? This is all so bleak. 

For the 2019 special issue of the journal Catalyst: feminism theory technoscience, I asked Alice to write a creative essay about the straw bans. It was one of my favorite things she ever wrote. The title is “The Rise and Fall of the Plastic Straw: sucking in crip defiance.” It begins with a story. Here’s Alice reading it: 

Alice: [Scene. Exterior. Campfire in a moonless night. A wizened Asian American wheelchair user wrapped in a shawl tells a story to children gathered by the flickering light.]

“There was a day when plastic straws, plastic bendy straws, straws by the pack and individually wrapped, roamed the earth. Some used it for boba, others for their iced coffee. Access was everywhere….and then there were The Bans. The Bans said plastic was bad. The Bans made plastic straws disappear. The Bans wanted to create a gateway to zero waste (Ives, 2017). The Bans intended to remove single-use disposables from this planet. The Bans came in cities big and small, from Seattle to San Francisco, and from companies like Starbucks (Archie & Smith, 2018; Ho, 2018; Starbucks, 2018). Celebrities praised the #StopSucking campaign with the fervor of fornicating sea turtles. Out of the Internets, oozing from the muck and dumpster fires, arose #SuckItAbleism...disabled people telling their stories on social media. These two tags of hash were in an epic narrative battle over the right to be disabled in public, wholly and unapologetically. With each story and selfie, disabled people created culture, knowledge, and visibility against an ableist tsunami of interrogation, disbelief, and dismissal.”

[Camera pans to children spellbound by the tale, their eyes wide with terror and fear. From the west, a dust storm sweeps through the camp, extinguishing the fire as the children and the old wheelchair user retreat to a cave nearby. Interior. Cave. The wizened storyteller coughs, continuing her story.]

“Like canaries in a cave mine, the Disabled Ones said, ‘We need plastic straws to drink, for nutrition and hydration. We deserve access without requests. Exemptions by the non-disableds cannot protect us.’ And like this howling wind, the voices of disabled people were drowned out as accessibility was sacrificed for a zero-waste life, not knowing the value of single-use plastics would have to save the human race post-plague. Now we search high and low for straws for first aid and other plastics to stay alive while the alien strain claim more of our kind everyday. We, the Disabled Ones, had stockpiles for our survival as the Soft Ones [a.k.a. The Non Disableds] withered away with their hemp bandages and pasta straws. We are still here, fighting for everyone. What is the lesson, my little ones?” 

 [All the children reciting in unison against a backdrop of a makeshift clinic.] 

“Believe disabled people!”

[Sounds of a wolf howling. Fade to black. Roll Credits.]

Aimi: Alice seemed to often be thinking about herself in the role of a wisened disabled elder, telling stories of how we survive and thrive despite everything thrown at us. These stories felt like oracular revelations. Reading them, I remember thinking to myself, “Maybe Alice is some kind of prophet,” as if the answer was not obvious. 

As the COVID-19 pandemic began in 2020, our conversations about eugenics, and also about about life and living, deepened. We took every opportunity for remote access and connection. Of this time, Alice wrote in a narrative for the Remote Access Archive, “There is deep disabled joy and love in remote access. This disabled wisdom prepared us for a world that shut down while nondisabled people scrambled to acclimate to a reality we already intimately know.”

Here’s a bit of our conversation in 2020, part of a series of Contra* episodes called “Solidarity Chats”: 

Alice: I think so much of this is also based on judgements of like our quality of life, you know? I think some of the calculus or, you know criteria is often based on like, prognosis and like how many years do you live with treatment, if you recover, for you know, one person compared to another person. And, you know, obviously if you’re older or disabled, you may not live as long if you have all the access to treatment and interventions. And, you know, somehow, because those pure numbers of, “This person might live seven years versus twenty years,” does that—I mean does that really mean that the person with fewer years shouldn’t have the opportunity to live? I mean, I think sometimes the metrics is just really messed up, where it’s just based on like, longevity, which really isn’t a fair measure, because I think as disabled people and older people are just still people, though 00:17:05; it’s really what you do with your time. It’s really about the quality of the time that you have left. And I think, for myself, personally, you know, I don’t take anything for granted right now. I’ve never—I’ve not taken anything for granted for quite a long time with my progressive disability as I really have become weaker over time, just because of the natural progression. I actually feel like, you know, ironically the most excited, the most, like… I’m really at my peak now! 00:17:47 Even though I’m really—if you look just purely based on paper, I’m at like, the most declined in terms of just, you know, functioning and all those biomedical kind of measures. But like, you know, I feel the most alive right now. And I think that’s something that never is going to appear on a questionnaire or on a protocol. You know, we lose so much of the… the qualitative aspects of what it means to be alive and what it means to want to be alive. I think that’s, you know, something that’s missing, and I think that’s why storytelling is so important to me right now.

Aimi: From storytelling came Alice’s prophecy that disabled people are modern oracles, truthtellers whose ideas are often ignored until it is too late. 

Alice: I understand sometimes we feel compelled because of the world around us, and the circumstances around us. But, you know, I think right now, I think at this time and way before this time, you know, disabled people are the— are modern day oracles. You know, we’ve been telling the truth and trying to tell our truth forever. And whether or not people have been listening to us, or not. And if that’s—the one message I would say is that, you know, we have been telling our, you know, real talk about the world. And I feel like this is something that’s so needed right now. 00:20:12 And my hope is that as a lot of non-disabled folks kind of get a small inkling of everything they’ve taken for granted and just that this privilege they’ve had and their loss of—temporary loss of privilege at this point. Or, you know, this kind of temporary inconvenience—that they realize the kind of truth and the power of our truths. So, maybe that’s—that’s what I’ll end with, is that idea that we are the real oracles and, you know, hopefully people will pay attention.

Aimi: I’m holding the Disabled Oracles deck that Alice, Jen, and I created together. It’s the first print run, a sample so that we can print more. The card I pull is called The Wormhole, and it shows a circular portal. The archetypes in the cards were Alice’s ideas. They include the Ancestor, the Alarm, the Root, and the Dream. The last one is the Wormhole, sort of a card of death and rebirth. The questions it asks are, How do you bend and crip time? What value does time hold for you? How do you make time for yourself and others?

Grief makes time feel unstable. It bends back on itself, and you feel like you are transported into other worlds, other timelines. As I told another friend and comrade grieving Alice’s transition into ancestorhood, the deaths I have witnessed often make me wonder if there are other worlds and timelines out there where we are still with our loved ones. Maybe there are some where Alice lives to be a wisened old crone at 100. We just happen to live in this particular timeline. Somewhere out there, the other us’s are still with her. 

Alice writes to me in a letter from the past, dated September 11, 2020. “Strange how it’s only been a week since our hangout on Zoom, and the world feels even more apocalyptic and eugenic than before [...] I hope correspondence like this keeps our connections alive and provides a historical paper trail of our times.” Her signature says, “Alice,” but to me, it always looks more like, “Alive.”