Synopsis: Remembering an icon: Disability rights leader & bestselling author Alice Wong (51) dies; hear from friends & allies on what's next in the fight for health care & civil rights for disabled people. “A lot of Alice's advocacy was focused around the systems that force disabled people to be at the margins . . . Whether it is the Black Lives Matter movement or the pandemic, we see the ways in which our society and political systems respond, and not in ways that prioritize those who are least privileged and have the least amount of power.” - Sandy Ho DESCRIPTION: Alice Wong lived longer than she expected, but not long enough. The celebrated disability activist lived by the principle that disability justice is integral to all liberation movements, and centered disabled stories with the Disability Visibility Project. In this episode we celebrate the life and legacy of Alice Wong with two of her dear friends and collaborators, Sandy Ho and Steven Thrasher. Guests: • Sandy Ho: Executive Director, Disability & Philanthropy Forum • Steven Thrasher: Daniel Renberg Chair of Social Justice in Reporting, Northwestern University; Author, The Viral Underclass & The Overseer Class Full Conversation Release: While our weekly shows are edited to time for broadcast on Public TV and community radio, we offer to our members and podcast subscribers the full uncut conversation. Watch the episode released on YouTube; PBS World Channel Sundays at 11:30am and on over 300 public stations across the country (check your listings, or search here via zipcode). Listen: Episode airing on community radio (check here to see if your station airs the show) & available as a podcast January 14th, 2026. These audio exclusives are made possible thanks to our member supporters. Become a member today, go to https://Patreon.com/LauraFlandersandFriends.
Synopsis: In a powerful tribute to a fearless leader, friends and collaborators share stories of Alice Wong's unwavering commitment to centering disabled voices and challenging systemic inequality in all its forms.
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Description: Alice Wong lived longer than she expected, but not long enough. The celebrated disability activist lived by the principle that disability justice is integral to all liberation movements, and centered disabled stories with the Disability Visibility Project. When Alice Wong died on November 14 at the age of 51, people across social movements shared their grief and awe for her work, such as her bestselling 2022 memoir, “Year of the Tiger: An Activist's Life”. She has been called an oracle, visionary, unapologetic and fearless, and our guests, Wong’s dear friends and collaborators, are committed to lifting up her legacy. Sandy Ho is the Executive Director of the Disability & Philanthropy Forum and partner with Alice Wong and Mia Mingus in the Access is Love campaign. She was asked by Alice Wong to post her letter after she passed, where Wong writes “. . . our wisdom is incisive and unflinching.” Steven Thrasher is an acclaimed journalist, professor and author of “The Viral Underclass: The Human Toll When Inequality & Disease Collide”. He was suspended from teaching classes after speaking out — as Wong also did — on Palestine. Join us as we celebrate Alice Wong and ask what is the work to be done when it comes to healthcare and civil rights for disabled people. Plus a commentary from Laura on imagining the next 100 years.
“A lot of Alice's advocacy was focused around the systems that force disabled people to be at the margins . . . Whether it is the Black Lives Matter movement or the pandemic, we see the ways in which our society and political systems respond, and not in ways that prioritize those who are least privileged and have the least amount of power.” - Sandy Ho
“I remember talking to [Alice Wong] about the ways she had been conditioned as a disabled Asian American woman to try to accept crumbs, to not complain, to be very docile. I thought that she was really brilliant in bridging together not just Asian American communities, but queer communities, LGBTQ communities, all the communities where your body is made to feel like it doesn't belong.” - Steven Thrasher
Guests:
• Sandy Ho: Executive Director, Disability & Philanthropy Forum
• Steven Thrasher: Daniel Renberg Chair of Social Justice in Reporting, Northwestern University; Author, The Viral Underclass & The Overseer Class
*Recommended books:
“Year of the Tiger: An Activist's Life” by Alice Wong, *Get the book
“The Viral Underclass: The Human Toll When Inequality and Disease Collide” by Steven Thrasher, *Get the book
(*Bookshop is an online bookstore with a mission to financially support local, independent bookstores. The LF Show is an affiliate of bookshop.org and will receive a small commission if you click through and make a purchase.)
Watch the episode released on YouTube; PBS World Channel 11:30am ET Sundays and on over 300 public stations across the country (check your listings, or search here via zipcode). Listen: Episode airing on community radio (check here to see if your station airs the show) & available as a podcast January 14th, 2026.
Full Episode Notes are located HERE.
Full Conversation Release: While our weekly shows are edited to time for broadcast on Public TV and community radio, we offer to our members and podcast subscribers the full uncut conversation.
Music Credit: 'Thrum of Soil' by Bluedot Sessions, 'Steppin' by Podington Bear, and original sound design by Jeannie Hopper
Support Laura Flanders and Friends by becoming a member at https://www.patreon.com/c/lauraflandersandfriends
RESOURCES:
Related Laura Flanders Show Episodes:
• “The Future is Disabled”: Leah Lakshmi Piepzna-Samarasinha: Watch / Listen: Episode Cut and Full Uncut Conversation
• The New Disabled Population in Gaza: Comedian & Disability Advocate Maysoon Zayid: Watch / Listen: Episode Cut and Full Uncut Conversation
• Anita Cameron & Keith Jones on The Americans with Disabilities Act: A Civil Rights Milestone With Miles To Go: Watch / Listen: Episode Cut
Related Articles and Resources:
• Disability Visibility Project, Founder: Alice Wong
• A Tribute to an Oracle, Alice Wong, by Rebecca Cokley, November 26, 2025, The Nation
• Trump Gutted AIDS Health. Care at the Worst Possible Time, by Steven W. Thrasher & Afeef Nessouli, December 1, 2025, The Intercept
• On Valentine’s Day, Let’s Recognize Why #AccessIsLove, by Alice Wong, February 14, 2019, Rooted In Rights
• Remembering Alice Wong: Writer, Advocate, Friend, by Steven W. Thrasher, November 17, 2025, LitHub
• Crips for eSims for Gaza, chuffed.org
• Alice Wong Interview with Steven Thrasher with subtitles, Watch
• Alice Wong, 2024 MacArthur Fellow, MacArthur Foundation
CHAPTERS: Remembering Alice Wong: A Visionary Activist's Profound Impact
00:00:00
How Sandy Ho and Steven Thrasher Connected with Alice
00:02:09
Alice Wong's Vision for Disability Justice and Bridging Movements
00:06:16
The Evolution of Disability Activism: From ADA to Disability Justice
00:12:29
Alice Wong's Fight Against Inaccessible Healthcare and Systemic Ableism
00:15:17
Navigating Political Attacks and the Complexities of Assisted Suicide
00:19:55
Imagining a World Budgeted for Access and Bodily Autonomy
00:24:40
Alice Wong's Unapologetic Humor and Generous Spirit
00:29:39
Sandy Ho Shares Alice Wong's Moving Posthumous Message
00:34:16
The Enduring Impact of the Disability Visibility Project
00:38:38
Reflecting on Activism's Future and Supporting Progressive Media
00:42:54
123.
While our weekly shows are edited to time for broadcast on Public TV and community radio, we offered to our members and podcast subscribers the full, uncut conversation.
These audio exclusives are made possible thanks to our member supporters.
0:24
Alice Wong.
She lived longer than she ever expected to, but absolutely not long enough.
When she died in November 2025, public grief showed up everywhere.
She was hailed as an Oracle of visionary, the first disabled public intellectual, and her loss was mourned by disability justice activists, writers, readers, journalists, editors and colleagues in the movement against genocide in Gaza and beyond.
0:50
She was mourned by feminists, scholars, health care workers, hackers, masses of social media followers and Story Corps colleagues, by people inside the institutions of philanthropy and government where she'd served, and by the many, many so-called outsiders who read her stunning memoir, Year of the Tiger.
1:10
An activist's life.
So who was Alice Wong?
For us, she was one of those great guests who got away.
We never got a chance to talk with author, editor, activist Alice Wong in her life.
So today we have invited two people who knew her well and collaborated with her in her work.
1:29
They're here on the program to celebrate her astonishing life.
Sandy Ho is the executive director of the Disability and Philanthropy for Forum and partner with Alice Wong and Mia Mingus in the Accesses Love Campaign.
Steven Thrasher is the author of The Viral underclass, The Human Toll, When Inequality and Disease Collide, and a professor.
1:51
He's the Daniel Renberg Chair of Social Justice Reporting at the Medill School of Journalism at Northwestern, but he was suspended from teaching classes there after speaking out, as Alice Wong did, too, on Palestine.
He wrote a gorgeous remembrance of Wong on the literary platform Lit Hub.
2:09
Welcome both.
I am really so honored and happy to be with you today.
And I want to get started.
But in the spirit of access and inclusion for all those who might be helped with it, I'm going to invite us to start with a little self description.
I mean, I'll do mine this way.
2:25
I'm blondish, grayish hair, messy with glasses, white skin, stripey shirt, black jacket, and happy to be here.
What about you, Steven?
I am sitting in a hotel room in Johannesburg, South Africa.
2:43
There is a painting of the Nelson Mandela Bridge behind me.
I am a balding black man and I am wearing a black T-shirt and a rainbow cathea in honor of Alice.
And I also just wanted to say, Sandy, I wanted to offer my condolences to you and my gratitude for everything you've been doing to help keep Alice's spirit alive.
3:04
Absolutely.
And that work continues today.
Sandy, what about you, if you were to describe yourself?
Here everyone my name is Sandy Ho.
I'm a Asian American disabled woman.
I'm sitting in my wheelchair.
I have short dark curly hair and I'm wearing a blue button up shirt.
3:21
Behind me the pink and yellow couch and then on the wall is a Lego Galaxy and some flowers.
Beautiful.
Thank you both.
I appreciate that.
How did you both meet Alice Wong?
How did you first encounter her, Sandy?
3:40
So much of my friendship with Alice was over text and emailed.
I first met her back in the days of Skype.
And this was about 15 years ago.
And at the time I was working at a young women's mentoring program for young disabled women who were mentored by older disabled women.
4:00
And I myself was also seeking my own role models.
And I came across Alice Wong's letter to a her own younger American disabled girl.
And I essentially called, emailed her and very generously responded and we just fell into a very long conversation where she asked me a lot about myself and and my family.
4:29
Beautiful.
What about you, Steven?
How did you and Alice connect?
We first connected through Twitter and as other people noted, Alice was the epitome of the good days of Twitter.
And I believe we first started interacting around 2014, 2015.
4:46
I was a writer for The Guardian and I was reporting on the Michael Brown shooting in Ferguson, MO and really covered the Black Lives Matter movement in depth for a couple of years.
And I think I started interacting with Alice about that.
She was both interested in a supporter of the Black Lives Matter movement.
5:02
But I think we first initially interacted when we were writing about how many people who are disabled were affected by police violence.
And there was this, this run of time, I'd say six months, 12 months, where there's all this really good and interesting data coming out challenging policing and looking at different ways of it.
5:20
And it wasn't just that Black men were disproportionately being killed by police, but it was people who are disabled who often either didn't know how to respond to police commands or were confused by them or, of course, the police were not, you know, taking notice of people who are deaf and what not and communicating with them.
5:37
So that's how we first started.
And like Sandy said, it was a lot of texts, a lot of phone calls.
I only got to meet her once in San Francisco, which I can tell you about in person.
But she was one of the main intellectual interlocutors and writers that I was in contact with over the last decade.
5:55
And there were a few days, I think over that time where I was not in touch with her or affected by the things that she.
Well, so that our audience can meet her, at least virtually, we're going to play a part of the video that the MacArthur Foundation made when they awarded her their much vaulted 2024 Genius Award.
6:16
Here's some of that.
Disability is so much more than pain, trauma and tragedy.
There's creativity, adaptation and talent that comes from living in a non disabled world.
I'm Alice Wong and I am a writer, editor and disability justice activist.
6:36
Disabled people hunger to see themselves accurately depicted, and I built my platform because there are so few spaces for us and by us.
As a writer and editor, I address the lack of disabled voices in publishing, journalism, and popular culture and illustrate the systemic every lism that renders disabled people as disposable burdens and objects of pity.
7:03
Storytelling is a powerful form of resistance.
It leaves evidence that we were here in a society that the values excludes and eliminates us.
Eugenics is not a thing of the past.
Many people think having a disability like mine is a fate worse than death.
7:24
The systemic every realism that I and millions of us face everyday tells us that we don't matter, that our lives are too expensive and not worth saving.
I want to change the way people think about disability from something 1 dimensional and negative to something more complex and nuanced.
7:44
There's such diversity, joy and abundance in the lived disabled experience.
We are multitudes.
In your gorgeous remembrance on Lithub Stephen, you wrote quote Alice helped decolonize disability communities of their often white centered nature and acted as a bridge between so many interdependent related struggles.
8:09
Can you elaborate on that?
Yeah, it's, you know, Sandy said.
Alice was very much an Asian American woman and a lot of disability writing as I first came to it was, was often quite white centered.
Alice was brilliant in writing about her own experiences of an Asian American woman.
8:27
And particularly I remember talking to her.
I interviewed her at length for for my book, The Viral Underclass and ended up quoting her.
She's the first page of my book, a quote from her.
But she was a very funny and also a very angry person.
And I remember talking to her about the ways that she had been conditioned as a disabled Asian American woman to be conditioned to try, you know, to accept crumbs, to not complain, to, to be very docile.
8:52
And so I thought that she was really brilliant and bridging together, not just Asian American communities, but queer communities, LGBTQ communities, all the communities where your body is made to feel like it doesn't belong.
And I think that she did that, you know, really brilliantly and drawing upon her own experience as an Asian American woman, but understanding that she was also an ally in in all other communities.
9:19
And that was a way to to under that people could understand that we are not independent, we are interdependent.
And so I initially saw that, you know, most, most strongly with the Black Lives Matter movement, we connected a lot talking as, as COVID started talking about my own research on HIV and AIDS and the ways that LGBTQ communities, many are disabled and many were disabled through the, through the experiences of COVID.
9:44
And then towards the end of her life, of course, she just went full tilt for Palestine.
And you showed the, the clip of her from the MacArthur Foundation.
She got in a lot of she got in a lot of trouble and a lot of abuse for her stance on Palestine when she got that an award and she still refused to back down.
10:04
And the fact that she and her two friends raised $3,000,000 for E Sims for people to use phones was really amazing.
And she did, I think she had a straight up interest in the Palestinian community and alliance, but she also really used a disability frame that was a you know, that was a powerful.
10:23
We were seeing people made disabled on videos.
We ended up having the the biggest cohort of disabled children ever recorded through this event.
And she had such compassion.
I think at times fear, you know, but but a lot of compassion for the very frightening ways people with Down syndrome where people who were, who had deafness were experiencing the genocide.
10:45
And she just went full tilt for those people and is beloved.
You know, it's really, really touching seeing how beloved she is in Gaza.
Yeah, we, we've had the actress, comedian May soon said on this program who's talked about the Palestine crisis.
11:01
It's a disability crisis, a mental health crisis.
I'm coming to you.
Sandy Stevens already talked a little bit about how Alice Wong broke down silos.
But speaking specifically as an Asian American woman, what would you add to this picture of how she, as he said, it sort of decolonized our sense of disability?
11:23
Yeah, I think that made Alice's storytelling and her just very inquisitive and excellent journalist question was that she got down to right right down to what are the issues and the big matter that both were not necessarily you know willing to go there and and she always was and you know as an Asian American disabled woman, we also like were friends and so we talked about our our experiences.
11:55
So one that comes to mind is we were actually very proud of being both having been Chinese school dropouts you.
Mean failing to learn Mandarin properly.
Exactly, and you know that the idea in the ways that ableism right as a system of oppression and as a force that required and expect not just our body mind to produce, but also to fit into a certain way with constantly that point in which Alice's storytelling and her disability visibility project media platform really pointed towards.
12:30
Yeah, well, the movement around disability has changed a lot over the decades.
And there's a lovely video where Judy Human, who was one of the great activists for the Americans with Disabilities Act coming out of the 60s and 70s through to the 80s, sits down with Alice Wong for one of her shows, the human perspective.
12:51
And it's a charming conversation and they compare notes.
But but Sandy, how would you say when it comes to disability, disability activism, the movement and the ideology behind it has changed in those generations?
You know, when I was coming up into the disability community and learning about my own rights as a disabled child, I started kindergarten in 1990 when the Americans with Disabilities Act was packed.
13:19
So there's not been a day or reality that I had in the world where my civil rights did not exist in this country.
Thank you.
Movement in particular in the US, of course, the federal administration has gone on to attack, they're very civil rights, but I would say that the movement that started around independent living and disability rights were really about equality and access.
13:45
And then shifting to this movement around disability justice, which is a framework of 10 principles that was established by the way Patty Byrne of Sind invalid alongside Stacy Park and Mia Mingus and others who are especially are disabled people of color and queer and trans books who as a community of people who experience ableism and disability.
14:14
The intersections of other marginalized identity like this is where disability Justice says actually rights are not enough to address equity and justice.
And when I think about the storytelling and the advocacy and activism work that Alice does, it was always a focus on those who are most marginalized, those who had the least power and privilege in our society and in our global context.
14:43
And it is not that necessarily right that we need one over the other, but we need both and can also have really transparent conversations across movement to recognize that, you know, this is not about having one that is more justified than the other.
15:02
But especially in this moment when the civil rights are being attacked, we're not going to have a the crew liberation from ableism that we all deserve without the interdependence that we're speaking about across both.
Intersectionality.
15:19
It was a big part of what Alice Wong embodied and talked about and worked on and and her work around the making those intersections visible started long before she won a MacArthur, or even before she started that disability visibility project, which we'll talk about in a minute.
15:35
Here's her telling one of her healthcare stories for the Disability Rights Education and Defense Fund back in 2012.
And I was like, well, you know, I don't really need it now.
I feel like I like using the Bipap.
I don't want to get too invasive.
15:54
And this is what he said.
He's like, oh, is it an issue of vanity?
And I was like, vanity?
He's like, oh, yeah, I understand you're a young woman.
You might be concerned about how you look.
And I was like, that is the least thing I really cared about.
16:14
I mean, I was concerned about infections.
I was concerned about being dependent on the machine.
I mean, when the battery dies and you know, to me that's really frightening.
And I was trying to, you know, convey that these are my wishes that in our conversations, in our long range plan, I want him to know I'm the kind of patient that wants non invasive measures as much as possible until I really need it.
16:49
But I feel like it didn't really reach him because I guess, you know, why wouldn't a patient want an intervention?
So that was to me, it was interesting that there's an interception of gender where he thought it was a vanity issue.
And to me that was totally like not on my mind at all.
17:08
And it really annoyed me And it really, I'll be really angry.
So that was Alice Wong talking in 2012.
And we should say there's much more of that.
And she goes on and talks about how she doesn't get the pelvic exams that the GYN exams that she should because there isn't a single table at her local gynecologist that can accommodate her comfortably.
17:28
Coming back to you, Sandy, you know how much has changed.
That was 2012.
You know, I wish that I could say and tell everybody that we've made significant gains in progress, but the reality is that we have not.
And a lot of Alice's advocacy, which focused around also the systems that force disabled people to be at the margins and not have the kind of powerful political voice and attention that her for a telling and advocacy constantly shone a light on.
18:01
When we think about the whether it is the Black Life movement matter that Steven was talking about or the pandemic, especially, we see the ways in which our society and political systems respond, and not in ways that prioritize those who are least privileged and have the least amount of power, but those who are already expecting a certain way of normalizing how we go about doing things.
18:32
And as the pandemic continued, so many of our peer or other institution and, and just social gatherings even have returned to this idea of going back to, you know, pre pandemic, this myth of normalizing what it was like beforehand.
18:50
And the reality is that it wasn't better and it wasn't good and there was no equality or equity prior to the pandemic in terms of the ways that people were able to or not able to get access to a basic fundamental resources like healthcare, like housing, like access to employment.
19:10
And now Fast forward, the same administration that is sending arms and weapons around the around the world, Stephen is shredding safety Nets back home.
Not that they were in great shape before, as Sandy pointed out, but it wasn't even days into the new administration, but Donald Trump was out there blaming non existent disabled traffic, air traffic controllers for that American Airlines crash in DC.
19:33
He's then gone on to basically, you know, expunge enforcement of accommodations for people with disabilities.
There's no ASL interpreters now at the press conferences at the White House.
And then there are the cuts to education, education and all the rest that are taking effect as we speak.
19:55
How are you interpreting this moment in terms of this movement that that you're and Alice is so much a part of Stephen and and what's at stake right now?
What are you seeing?
Well, a couple of things.
Yeah, you're listening.
All these examples, and some of it might seem small, like a Secretary of State.
20:12
Rubio just changed the font back from Calibri to Times New Roman.
And I didn't even know until I was reading about this that there are many reasons why people who experience low vision might have a, you know, the font might be better for them.
And the administration is going out of its way to try to torture people who are disabled the way that I think.
20:32
Elaborate what you mean by that, because that's a big statement.
Sure.
They're even making fun, you know, under this word that I don't even like to use woke because it has a, it is a noble black vernacular origin of what it means to be, you know, waking up to the world and understanding the world.
20:49
And they're sort of saying this font is woke, You know, we're going to get rid of it.
But they know they're just doing it to distress people who are disabled and to create the idea that, you know, doing anything that accommodates people is somehow weak.
It's also very misogynist.
I think that, you know, they think it's feminine.
21:05
They'll say it's gay.
This is the undercurrent of all they're doing, but they're really trying to torture people and exclude them who are trying to participate in their government.
I think about, I think about Alice a lot and you know, I feel very sad that that of course that she's gone and, and there's so many times that I'm thinking about her.
21:24
And one of the first disabled activists I ever knew who was named Beverly Edmonds.
She was a friend of my parents.
She worked in anti apartheid campaigns.
And I think one of the things that the Trump administration probably doesn't consciously know they're doing, but it's going after disabled activists who use their time to try to create change.
21:41
And I think that's one of the things that they really despise.
You know, it's that people, they think anyone who's disabled should be doing nothing, grateful for whatever crimes or Thrones on their way, and they resent the fact that people who might have time are using that time to provide care to other people.
21:58
And so I, I wanted to, you know, to share one thing that I've been thinking about with Alice.
I don't want to claim that this is how she'd think, but I want to say this is how she's influenced my thinking.
It's the passage this week of two maid bills, medical assistance in death bills that pass both in Illinois and in New York State.
22:18
And I had a, this is one of the issues that Alice changed my mind on 180°.
I had been very supportive of assisted suicide laws.
And in some level, I do think that that if people want to end their lives without stigma, they should be able to.
I've had, I've had suicides in my own family.
22:36
But from a disability perspective, Alice really encouraged me to, to look at what was happening in Canada, to read the accounts of people who who were living with disability.
And there in Canada, there was a lot of economic pressure to think about doing made.
And it is undeniable that it is easier to get an appointment and get permission to seek out death than it is to find pain medication, that is to find physical therapy and certainly defined housing.
23:02
And this is one of the ways I think Alice was really great at at focusing the most marginalized.
She would think, don't don't think about the situation of a person who's maybe not been disabled their whole life.
And now they're looking for kind of the, you know, the least painful way to end their life.
23:19
Think of it from the perspective of someone like Alice, who's had a, you know, a lethal disease her whole life and face pressure her whole life to be institutionalized and face stigma and pressure whole life to, you know, to kind of go away and refused to do so and said I live a life of meaning and value.
23:35
It is a deep and examined and joyful life.
And so the way that she helped me think about that has really made me, I think, think about this legislation a lot differently.
And to think about how many Western countries, the United States, Canada, you know, New Zealand, Australia, several European countries in the UK are all advancing right to die bills under Liberal governments while not saying Healthcare is a human right, while not saying rent is a human right.
24:04
She made that point repeatedly that it was part of our the failings of what she called our hyper capitalist society that while we give lots of rights to products and this and that and rights as corporations, we don't as people have rights to healthcare.
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24:27
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I mean, coming back to you, Sandy, I do want to talk a bit about vision and future and how do we make the kind of society that Alice Wong imagined.
24:54
But she first taught us a lot, I think, about what it takes to be disabled in this country in this time.
We should say she had a form of, of muscular dystrophy.
And over her life, as you're seeing even in these clips, she, she changed.
25:10
It took effect towards the end of her life.
She wrote devastatingly about what it was to have that tracheotomy and to have to use speech to text to speech software and how it made her have to slow down.
And time was different.
And she talked about cripping the world, what it was to to crip the world, to crip, something she wrote in Teen Vogue, is to bend compressed, twist, subvert, imbue disabled wisdom into systems, institutions and cultures.
25:38
So I would ask you, Sandy, you know, what is it?
What is the cripping you're looking for from the society we live in?
Well, one thing that I often think about and and particularly my role of leading an organization in the philanthropic sector is what would it look like if our country actually budgeted for access.
25:58
And I don't mean, you know, in the ways that perhaps some of us may think of people with disabilities as a wheelchair user who nobody that I know in the disability movement is going around with the tape measurer trying to see if the bathrooms dogs are wide enough, right or the doors are wide enough, etcetera.
26:17
I do have to stop you right there and say that's exactly how I grew up with a father in a wheelchair.
We spend a lot of time measuring doors.
So just saying that's going back.
That, you know, the ways that our movement perhaps has evolved since then is also, you know, what does it look like for people with disabilities to belong and to not just belong in kind of the participatory sense of like, yeah, you know, I get to be able to vote.
26:48
And still in this country, there are so many going places that are inaccessible but actually be able to take up space, take a political and economic power.
And the world that I imagine as disabled Oracle Alice Wong perhaps envisioned as well, is one that allowed all of us to just not just move about really, but also on our own terms and with full bodily autonomy, right?
27:22
That there is no hindrance to the ways in which people with disabilities can green and can have families and have jobs.
And also it's also OK if you don't want any of those things like that.
27:38
That was something that was really powerful that Alice taught me is in our friendship very early on, too.
She, I think, was aware in the ways that I was being pressured by others in my career to go in a certain direction.
27:55
And she would say, well, Sandy, you should really only do this if if you're actually interested and want to do it right, like screw everybody else and and what they think you should be doing.
And that was really just my own personal day-to-day experiences of Alice.
And there was that she just mental ableism in a really intimate way.
28:15
And when I think about that future, I am very concerned about the present in which that future is even going to happen.
Because when we hear about the right dismantling of the special education department in the US, the largest budget in our country and of course students with disabilities spans into adulthood as well.
28:38
But I think about the opportunities that I had right coming up as the Americans with Disabilities ackward path and some of the vastly now different experiences that students with disabilities in public schools and private schools and colleges and universities are having their their early education shuttered already.
28:58
And the reality is if we are not going to have a a thriving young people with disabilities, then we're not going to have disabled adults.
We're not going to have disabled elders.
It's a conversation that we have had repeatedly on this program in the last 12 months and more that while we are at the fate, at the stage in many of our movements of looking forward and creating and understanding that inclusion is not enough.
29:29
Rather that imbuing with disabled wisdom or, or cripping or queering our our world is good for everybody.
We're put on the back foot again of defence.
And Stephen, I wonder what you're making of that.
Like, how do we fight that rearguard action?
29:46
I mean, I think Alice wrote about it, about her ambivalence, about defending flawed institutions, but flawed institutions that were the ones that we were under attack.
How do you think about it in this moment?
Well, I think Alice, I, I, I'm, I'm thinking so much of Alice and I feel like I'm about to cry.
30:06
She went on the offense, you know, she did not just go on defense, which I admired.
She believed that we had the right to be whole people, you know, in our sexuality and our bodies and our careers and our emotions.
She went on the offense with the Democratic Party.
You know, on the one hand, I think she understood very clearly.
30:22
And I interviewed about it, you know, for my book, You know, she understood the danger of the Trump administration.
But she also said she wasn't going to vote for Kamala Harris over Palestine.
And so she went on the offense to the Democrats and say, no, you earn my vote.
Don't, don't make me come, you know, come to you to vote for you.
30:39
And she went on the offense with humor.
Everybody.
This is one of the things I loved and, and so many remembrances about her.
She was one of the most funny people, you know, so many people had ever met.
And I won't use the language in it because I know this is a family show.
But you know what?
30:54
One time I met her, she couldn't, you know, I knew she it was after the, the tracheotomy.
We had talked on the phone before we had, we'd Skyped.
But when I met her, she, you know, she could no longer speak with her voice.
And she served me cookies and I was like, I don't want to eat this to myself.
Like I don't want to eat these cookies.
31:09
You can't eat.
And she told me with very salty language, eat the cookies.
And I thought those beautiful.
She baked cookies and something to me.
She baked cookies and sent them to others.
She hosted dinner parties.
And I think that's a really deep thing about how she understood we all have different abilities, we all have different things we can offer and, and enjoy, you know, and I think that's a really helpful frame for thinking about disability.
31:33
It's not just I can't, you know, I have, I've had major foot problems over 15 years.
Sometimes I can't walk without a cane.
You know, it's not just I can't walk.
So I'm angry other people can walk.
You know, it's understanding we all have different experiences of the, of the earth.
And, and I think that's a great frame for thinking about disability, about trans issues.
31:51
You know, some people are as tall as cream Abdul Jabbar and they play basketball a certain way.
Some people have as big an arm span as Michael Phelps and they can swim a certain way.
Some people have higher levels of estrogen or, you know, testosterone and they, you know, and they perform certain ways.
32:07
And that's OK.
Like we can all take joy in the things that we experience and offer joy to others, even if we can't experience them.
And that's one of the deepest things I think I will remember from Alice that that that, you know, that she would serve me food when she couldn't eat.
32:22
And that, I think, helps me try to be more expansive at how I engage with other people.
Is there anything you'd want to add to that Sandy related to her going on the offensive and her sharing and relishing in other people's joy?
Yeah, I mean, there were not a ton of moments when I can think of that.
32:38
Alice gave me instructions.
I mean, we really deeply believed in each other as equals, even though that was really humbling for me.
But the once week when expression she gave me was come with an appetite.
And it was just very clear, like either coming with an appetite and also you're going to come with Tupperware because there's going to be leftover for you to take home.
33:03
And, you know, having the privilege and and real honor of experiencing our friendship in person after I moved to the Bay Area a little years ago, you know, she was often somebody who wanted to be out there, right?
33:21
It was always Sandy.
Let's go check out the latest museum exhibit at the SF MO Ma also was not one of the San Franciscan people who resisted crossing the Bay Bridge over to Oakland, which is where I live.
And I, I think the joy of Alice is that she, in addition to just being hysterical, had a sarcastic journalist in her own practice.
33:50
She was always very clear who her audience is.
It didn't matter to her whether you were somebody who had a very public official title or she was talking with a group of young people.
She was always going to tell it like it is.
And in that moment, it was always like, OK, this is somebody who is always going to level set and and you're you know, you're going to get that.
34:14
This recruits when I was.
Now she did give you 1 instruction and it did include a little salty language, but not too much.
After her passing Sandy, she asked you to post a message to social media.
Do you have that there?
34:30
Would you be willing to share that message?
Yes, yes.
And I just also want to preface this saying that at the time of her passing, I was in Boston.
And so where I said my first hellos to Alice was also where I said my goodbyes.
34:49
I I got the the text message from her sister letting me know that Alice wanted me to post this this message that I I can read.
Hi everyone, it looks like I ran out of time.
I have so many dreams that I wanted to fulfill and plan to create new stories for you.
35:08
There are a few in progress that might come to fruition in a few years if things work out.
I cannot 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.
35:27
It was thanks to friendships and some great teachers who believed in me that I was able to fight my way out of miserable situation 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.
35:44
In such a hostile, ablest 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 bastard grind you down.
I love you all.
36:02
Thank you, Sandy.
Now she talked about some projects that might be coming into fruition in the future and you're stewarded with her Lost anthology.
Is there anything you feel you can share with us about that or others of her wishes?
36:18
You know, when I as I continue to reflect a lot over somehow it's already been a month since her passing.
The one thing that we all know about Alice is that she was incredible planner write so much so that for folks who may not have read her memoir of the tiger, she'd already written in her obituary in one of the last chapters.
36:42
And it got to the point where I was like, you know, I wish these reporters would just stop asking me questions because it was very intentional that in the days ahead, myself and her friends and close great crusted circle went back and relied on Alice's own words, right?
37:02
Because we want to extend her voice and her own language and her own words as much as possible in the ways like, you know, she thoughts so, so much.
And her activism was centered around was extending and making sure that disabled people have the autonomy to tell our own stories.
37:21
And so with the the legacy that I I'm taking a small part and playing is, yes, ensuring that her next technology disability vulnerability, ironically.
And so you might imagine it's been a lot of just not just tears and sadness, but a lot of reflecting on my own part.
37:45
And again, in the ways that Alice continues to do as she had throughout our friendship, like open doors for myself to, you know, get to a place where I'm comfortable talking about disability, vulnerability.
And the incredible SAS who are included in this biology agreed for their grace and patience.
38:11
And also, I'm really excited and honored to be ushering this into the world at a time when, again, Alice continues to show up when the world needs her most.
And that disability, that disability visibility project that she began years ago is still going strong.
38:30
It's still out there.
People are recording their stories.
What began as a collaboration with Story Corps continues, and it's gotten much bigger.
Steven, you interviewed Alice for your book on the viral underclass.
When you think about her contribution and the contribution of DVP, what do you want to pull out and lift up?
38:53
Well, I mostly the the first words in my book are the world is 1 big Petri dish, which is something Alice said to me, but that I think it's so cosmic and it's scale of how we have to think about relating to other living beings, including microorganisms we can't see.
39:10
But I think the the main thing I want to do is try to let her speak for herself.
So my contribution that I'm, that I'm trying to make to this is that I, I had a 70 minute Zoom interview with her for my book.
And we talked about when she, when she could no longer speak, we talked about, you know, do you want to release this?
39:27
And she thought about it and she was actually thinking about using it for some process, maybe to make her text to voice sound more like herself.
And after she passed, I made the decision that I would make it public.
I think she would be fine with that because I want people to be able to hear It's, it's 70 minutes mostly just of her.
39:47
And she's so wise.
And I really do think that she's going to be a philosopher of our time.
That's, you know, that that lasts for decades and centuries because she was such a unique and beautiful and forward thinker.
So yeah, the main thing I would say I want to leave people with is it's easy to find on the Internet the interview that I did with Alice and you can hear her talk herself.
40:08
All right, well, we're going to end with her talking herself as well.
This is one of those stories that she recorded with her friend Mia Mingus for the Disability Visibility Project.
Here's the two of them.
It was released in 2016 in.
Your blood, you write.
40:23
We must leave evidence.
Evidence that we were here, that we existed, that we survived and loved.
Evidence of who we were, who we thought we were, who we never should have been.
Evidence.
And there are other ways to live past survival, past isolation.
40:42
I do wonder, we're going to mark our leave.
I think about that a lot.
And I don't believe this is something we can leave for everyone to enjoy.
Sandy, the work of the Disability Visibility Project continues and other work like it is out there inspired by her.
41:03
Alice Wong.
Are there examples, projects of world creating with that disability wisdom that you are excited about right now that you want us to find out more about?
Sure.
41:19
And the other piece that I would also add to this is that in the ways that Alice did not unfortunately and tragically live long enough to see the world that she and Virgin create, I was made aware that WordPress has made the decision to host her website disability visibility Project for the next 100 years.
41:45
And what about the world building and what a privilege that future disabled generations will have already at their disposals.
You know, this is a kind of influence, right and disability legacy leaving that Alice and her advocacy and activism leaves.
42:05
And and so from that it I when I think about other projects, one comes to mind the Society of disabled oracles that she was also a part of.
But it is a people can check it out, but you know, drive from the kinds of disability was done that I was I wrote about so, so often.
42:26
I think about also the incredible center that is now in San Francisco, the San Francisco Disability Cultural Center, the the country's first and only publicly and municipally funded disability Cultural Center.
And this is powerful because, right, it moves us beyond just direct service isn't compliant, but you.
42:46
Will that that?
Storytelling and and the kind of discipline for that that Alice's advocacy built upon.
I'll ask the two of you the question I ask all our guests as we close and that is what do you think is the story that the future, that future that you just talked about will tell of us?
43:05
What do you think the future?
I don't know, 2550, a hundred years will say about us, Stephen.
I think unfortunately we will look at the possibility of what Covad offered us to reorganize the world and and we saw glimpses of it.
43:22
We saw a massive spending on public health.
We saw a lot of interdependence, people acting to save millions of lives, and it gave us a blueprint for how to move forward in a much more equitable way, anchored in racial justice and disability justice.
43:40
And we're seeing a a really terrifying dismantling of every shred of how that happened, not just the vaccine infrastructure, but the vaccines themselves.
And I think Alice's voice will be one that is looked at in the future of understanding exactly what was happening in 2020 as the ramp up happened and as it was dismantled as well.
44:01
Sandy, what about you?
You know, one of the many lessons that I've learned through display justice, organizing and and activism is that in the future, I know that activists and the legacy that had been left by them will continue to shine away on the ways that activism requires us to hold institutions and foundation and organization governments accountable to our communities.
44:32
And you know, as Alice being one of them, I hope that the future also recognizes and tells stories of how communities still found each other and, and not just found respite and care of one another and solidarity, but also found joy because at the end of the day and, and in the end of this chapter of, of our time together, we had each other.
44:58
And that's the enduring lesson that I've learned from the disability movement.
Sandy, Steven, thank you so much for joining us.
It's really been a pleasure to spend this time with you and and your memories of Alice.
Well.
Thank you so much.
45:14
Thank.
You.
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45:30
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