Bay Area Legends: Activist Alice Wong and The Power of Bringing Visibility to Disability
57:46 Share

Hi, I'm Bianca Taylor. I'm the host of KQED's daily news podcast, The Latest. Powered by our award-winning newsroom, The Latest keeps you in the know because it updates all day long. It's trusted local news in real time on your schedule. Look for The Latest from KQED wherever you get your podcasts and stay connected to all things Bay Area in 20 minutes or less.

Hey, have you heard of On Air Fest? It's a premier festival for sound and storytelling taking place in Brooklyn from February 19th through 21st. I'm Morgan Sung, host of KQED's new tech and culture show, Close All Tats, and I'll be there at the fest to give a sneak preview of the show, along with an eye-opening story.

From KQED.

From KQED in San Francisco, I'm Alexis Madrigal. Alice Wong is a brilliant, ribald disability justice activist and writer. She's the author of the celebrated memoir, The Year of the Tiger, and the editor of an anthology of disabled people's experiences with intimacy.

In recent years, Wong's illness took her ability to speak without technological assistance, but she continues to make herself and members of her community heard. As part of our new series profiling legends of the Bay Area, Wong joins us to talk about her joyous approach to life, her recent MacArthur Genius win, and the importance of disability visibility. That's all coming up next after this news. Welcome to Forum. I'm Alexis Madrigal.

For months, we've been dreaming of launching a new occasional series here on Forum called Legends, where we bring you a different kind of show about a local figure who's really made a dent in the wider world. We're looking for people who are generational changemakers, people where you say there is a before and an after they entered the scene. And the happy truth of our area is that there are so many of these people in different realms, culture and tech and activism and politics and food and

We're trying to get after not just who these people are, but their web of influence, the different people moving forward in time who carry a little piece of that person with them.

To kick us off on this series, we are delighted to highlight Alice Wong, a trailblazing activist who has transformed the disability movement. Our area has a venerable tradition in this realm, reaching back to the rolling quads at Berkeley, at Judy Heumann, the Center for Independent Living, and so many more people who've pushed for the passage of legislation to make the inclusion of disabled people in society a necessity.

We're going to hear my interview with Alice in the next segment, but first we're joined by two people who've influenced and been influenced by Alice Wong, contemporaries of hers in the trenches who can describe the landscape of disability rights and disability justice and the impact that she's had in the field. We've got Sandy Ho, Executive Director of the Disability and Philanthropy Forum. Thank you so much for joining us, Sandy. Thanks for having me.

And we've got Yomi Sachiko-Young, an Oakland-based social justice organizer and disability justice dreamer. Welcome. Thank you for having me. So, Yomi, let's start off with you and try to get a sense of the person we're talking about here. How would you describe Alice and how she approaches the world? Oh, Alice is hard to contain in words. Mm-hmm.

Alice is, yes, an organizer. She is my comrade in political struggle. She is my friend. She's a foodie. She's an artist. She's a bit bougie, which I love. She's an

Not unlike yourself, Yomi. Not unlike myself. We have a lot in common. We share a lot of commonalities. She's a first-gen kid. Her parents immigrated from Hong Kong. I'm also a first-gen on my dad's side, so we have that kind of unique experience of being first-gen kids growing up in America. She is my contemporary. We are both from the greatest generation, Generation X. Yes. Yes.

And Alice is a storyteller and a community weaver and an oracle. Sandy, do you want to patch some holes there or add another couple of lines of argument about Alice Wong?

Yeah, absolutely. And I totally agree with everything that Yomi's already said. You know, likewise for me, Alice is first and foremost a friend. I connected with her over the internet back, I think it was around 2012, when I was seeking out kind of my own representation and connections of other disabled Asian American women.

And I came across Alice and we quickly became friends. And most of our friendship was held online. But, you know, I don't want to spoil too much for

who may not have read her memoir Year of the Tiger yet, but in that book you'll also find out about the Westward Ho campaign that she led. And that actually got me to essentially become a Bay Area transplant. And she is a tiger sister and she's somebody who I trust.

Somebody who I admire and the ways that she has made so much happen, not just for individuals, but for our communities. Yeah. You know, Yomi, there is such a long, rich history of disability activism in the Bay Area, kind of mentioned it at the top. But it feels like your generation, Alice Wong in particular, kind of moved things from being about maybe disability rights alone to disability justice alongside disability rights. Yeah.

Yeah, for sure. I mean, the Bay Area should be so proud of our rich history in kind of being ground zero for what I would call the independent living disability rights movement that sprung up out of UC Berkeley, folks like Ed Roberts, Judy Heumann, other folks that then founded the Center for Independent Living in Berkeley. And then

You know, as important as that movement was, as transformative as that movement was, I mean, we saw so many gains in terms of our place in civil society, policies. We saw the passage of the ADA, the 504 provisions of the Rehab Act, which prohibits discrimination in federally funded programs.

We also saw a kind of weird erasure of people who look like Alice and I, right? So people of color, people who have...

experience oppression on multiple levels. And so that's where this framework of disability justice comes in and is so important. Neither Alice nor I, I think, would ever claim to be

You know, the thinkers or the luminaries who came up with that framework. But we're certainly we evangelize it and we certainly try to advance it. Disability justice, just quickly for listeners that are not familiar, is really a political frame for understanding how disability intersects with other forms of systemic oppression.

It requires an analysis, more than a surface analysis, of ableism, how entrenched ableism is in our culture, and how ableism coupled with white supremacy and capitalism and ageism and sexism and homophobia and all of these other isms can change

really wreak havoc in the lives of people who are often pushed to the margins. So people of color who experience disability, folks who are unhoused, folks who are undocumented, those who are incarcerated, trans and non-binary folks, queer folks. And those are the voices and the experiences that are centered in disability justice organizing.

You know, Sandy, one of the mechanisms that Alice Wong has kind of used to push along disability justice and get more political energy and attention around it is the kind of storytelling and bringing people's stories from the disability movement kind of to a broader world. Does that kind of visibility feel particularly political in this moment?

Absolutely. What I so appreciate about Alice's work is first and foremost that it is the way she invites folks who may not even consider themselves initially as disabled or politicized by their disability. And in this moment when we're seeing the

attacks that are happening in real time, the erasure and the complete dismantling of the safety protection policies of our community, including migrants and trans folks, that

This is why our stories and our lived experiences that Alice has so brilliantly gathered in the ways that she does and built a platform that is really a communal space. This is not Alice talking about herself. And it is more of an invitation. It is a call to let's mobilize and realize that if we don't have each other,

then, you know, that's when we've already given up our power. And so just the constant insistence and reminder of that is just such a powerful through line in a lot of her storytelling. The other thing I would add too is, you know, she leads with her boldness and her rage. And

Look at what she'd written about Medicaid. Look at what she'd written about the climate and wildfires. And so these moments that are happening, she has reminded folks that disabled people are not just here.

But we're also a part of what really needs to be happening and what is the future for the work ahead.

You know, that's beautiful. Thank you for that, Sandy and Yomi. One of the things that makes this work so powerful is its combination of kind of the political and the personal, the kind of intimacy of some of these Disability Visibility Project moments. And we actually have one of you and your mother, and we kind of want to play it so people can get a sense of how these particular experiences can be recorded into the record of our country.

Your skull was fractured, your arms, your ribs, your legs. And they said that you would probably die during the night. So the best thing would be to leave you at the hospital. But there was no way that I was going to leave you there. And they had a rocking chair. And I would sit there and hold you. And I remember our hearts touched each other. I used to always say, we have one heart, you and I.

So what was it like caring for me throughout the years? Well, I remember giving you a bath, and you turned your arm, and I heard it. The bone snap? Yeah. And you were crying, I'm crying. I used to keep track of my fractures, but then they just got out of control. I would fall, or I remember one time one of my sisters dropped an orange on me, and that broke something. I mean, you could look at me too hard, and I would break. So I have my down periods.

But I don't always have to articulate every single thing because you get it. You understand. You know, one of my regrets is that I didn't have my own children. And I think one of the biggest desires for wanting to mother is to be able to carry on this legacy of love that you started with me.

You tell me often that you believe I picked you. I think children come as a gift to their parent. I don't know if I've ever told you this, but I also feel like you picked me. If you had walked away and left me there when I was born, nobody would have looked askance. But I felt that you were a part of me. So I knew that I made the right decision. And I've always admired you for that. It was my honor. Mm-hmm.

That was Yomi Sachiko-Young talking with her mother, Sarah Churchill. Beautiful segment played on StoryCorps and was part of the Disability Visibility Project's work as well. That is, of course, Alice Wong's project, and we're going to talk with her right after the break. ♪

Hey, have you heard of On Air Fest? It's a premier festival for sound and storytelling taking place in Brooklyn from February 19th through 21st. I'm Morgan Sung, host of KQED's new tech and culture show, Close All Taps, and I'll be there at the fest to give a sneak preview of the show, along with an IRL deep dive all about how to sniff out AI.

You'll also hear from podcast icons like Radiolab's Jad Abumrad, Anna Sale from Death, Sex, and Money, and over 200 more storytellers. So come level up your own craft or connect with other audio creatives. Grab your tickets now at onairfest.com.

Welcome back to Forum. I'm Alexis Madrigal. Let's listen to my interview with disability justice activist Alice Wong. Alice, you know, two years ago you were hospitalized due to a medical crisis which left you without the ability to speak or eat. In our Perspective series, you talked about what it's like using a text-to-speech app. Can you talk about your recent experiences trying AI-generated speech?

What you are hearing now is from a text-to-speech app that I have been using for the last two years since I lost my ability to speak. It does the job but it mispronounces words and so much of my personality is left out because it doesn't allow for the cadence and emotions that comes with an organic voice.

I'm on the ability to speak and tried a few AI generated voice cloning apps where you upload samples of your voice and they generate something that you can use the same way as a typical text-to-speech app. Alex, this is what I used to sound like when I wore a nasal mask connected to a ventilator that helped me breathe. I was impressed by how accurate it sounded, but I don't use it in my everyday life.

Because number one, it's expensive because there's a monthly fee rather than paying a flat rate for an app. And two, I have deep ethical concerns about AI, how much energy and water it consumes that exploits people's labor and content. For those reasons, I will continue the rest of the interview using my old app, even with its drawbacks.

You're known for being an incredible advocate for disabled people, and of course we'll get to that. But let's start in a little bit of an unusual place. What gives you pleasure in this life? Despite the pain and challenges I experience daily, I am radically committed to a life of pleasure and joy.

I love to cook and feed people. It is my love language. And I make lunch for my elderly parents about twice a week, so they don't have to cook as much. I love to entertain and enjoy hosting dinner parties, often co-hosting with friends for Friendsgiving, Hanukkah, and Lunar New Year.

I love caring for my cats, a bonded pair named Bert and Ernie that I adopted a little over a year ago and being a cat parent has made me more sensitive for the better. And I love amplifying the work of disabled writers and artists who I admire greatly. Being able to use my privilege to pass on opportunities to other disabled people and support projects I believe in brings me so much joy.

We live in such bleak times and what keeps me going is living life to the maximum without apology. How's your view of the politics of pleasure changed over time? Pleasure is definitely political and I want to shout out the work of Dr. Sami Shaikh, author of Black Disability Politics and a self-described pleasure artist who is currently researching pleasure practices.

I also want to cite a book by Adrian Murray Brown titled Pleasure Activism, The Politics of Feeling Good. Brown writes that pleasure activism is based in the belief that we all need and deserve pleasure and allows us to quote, reclaim our whole, happy, and satisfiable selves from the impacts, delusions, and limitations of oppression and or supremacy, end quote.

I lived much of my life without the pleasure that I need and deserve probably due to internalized ableism, lack of access, and lack of politicization. I turned 50 this year and to still be alive in this meat cage of a disabled body contributed to my growing radicalization that every moment counts, that pleasure exists everywhere, and that I have the power to create and pursue it.

Growing old as a disabled person hasn't been easy, especially in the last two years when I have been hospitalized several times. But I can say unreservedly it's also been a gift that I take for granted. You know, people sometimes love to talk about your wicked sense of humor too. What role does humor play in your life?

Oh man, I am a dirty bird. Having a dark, wicked sense of humor is a way I cope from the daily microaggressions and indignities of living in an able-eyed world.

Finding the absurdity of situations such as being stranded on a sidewalk without curb cuts or being infantilized in public by people who presume I have no life makes things slightly better while sitting on the inside plotting against my enemies.

When my memoir, Year of the Tiger, An Activist's Life, came out, a lot of people said they were surprised how funny I was which just goes to show how most people only know me through my writing or activism which tends to be serious.

One of the aims in writing that book is to share that I have multitudes and that being an activist isn't a life devoid of joy and humor. I mean, one reason I'm asking this set of questions is that you've always maintained that people with disabilities need to tell their own stories from their own perspectives. What do you think is so important about creating spaces for disabled people to narrate their own existences?

Things are slowly getting better when it comes to disability representation and self-determination, but there are still many instances, especially in depictions by media, that centers parents, caregivers, or professionals who quote-unquote "know better" and are a voice for the voiceless which makes me roll my eyes so hard. Even people with high support needs who may communicate atypically can express themselves

It just so happens they may express themselves in ways that require accommodation. Rather than perpetuating normative modes that are easy for non-disabled audiences, what if it is on them to do the work to decenter themselves when interviewing or talking with someone? I'd like to challenge any journalists listening to examine their approaches and to do the work of creating access rather than putting that labor on their sources.

See what I did there, Alex? Ha. Ha ha. All right. Let's step back. Where'd you grow up? What was your childhood like in the 70s and 80s? Children, comrades, let's go way, way back to a time before the Internet, a time before the Americans with Disabilities Act.

I was born and raised in Indianapolis, Indiana, as the eldest daughter of Chinese immigrants. There's a misperception that Asian Americans are primarily from the East or West Coast but it's not true. We're everywhere such as the Midwest and Deep South but you rarely see that depicted in the media. To be honest, I struggled a lot as a child.

I was born disabled with a neuromuscular disability and felt so alone and angry. I was mainstreamed in public schools and was usually the only disabled student in a classroom and/or one of a handful of Asian American students.

I had to grow up very fast advocating for myself with adults such as teachers and doctors even though I didn't have the language for what I was experiencing. I also did not feel that I could say no to interventions that were done to me or be honest about the pain and isolation I felt.

I think there's an expectation of disabled children to be brave and compliant to the adults in their lives which is probably how I turned out to be such a non-compliant weirdo. My parents had little to no understanding of disability but they were there for me unreservedly and sacrificed a lot in order to get my needs met.

I don't regret the circumstances of my upbringing because I'm quite glad my parents weren't hovering or overly involved in advocating on my behalf. I had to figure things out on my own which gave me the tools to navigate hostile environments and blatant discrimination as a young person.

Now that I am older, I recognize a lot of trauma I went through as trauma along with the everyday pleasures of being a kid who loved watching cartoons Saturday mornings such as Super Friends and going to the library.

When writing my memoir I intentionally did not include chapters detailing numerous instances of childhood trauma because I was cognizant of the preponderance of disabled narratives laden with tragedy with overcoming inspirational arcs. Those kinds of stories are already out there and I wanted my story to push against those conventions.

So in addition to turning 50, this has been a big year for you because you were awarded a MacArthur Fellowship, also known as the Genius Award. What do you want to tell us about that? It's an honor to be recognized by the MacArthur Foundation and to join an amazing cohort of fellows.

I definitely felt like the odd person out there who wasn't as accomplished as them but I know this is significant not only for me, but for my community. It is somewhat unfortunate that I can count the number of previous disabled MacArthur Fellows on my two hands, including Bay Area folks such as Ed Roberts, Rolf Hotchkiss, and Josh Meehl, all white disabled men.

I would like to become more involved in philanthropy, advocating for more disabled fellows and grantees.

I'd also like to press organizations to fund visibility culture and become anti-ableist. The day the fellows were announced, I published a statement of solidarity with Palestinians and Gaza fighting for their freedom in land. It elicited a huge amount of abuse online, which was just delightful. I believe disabled liberation is intertwined with the liberation of all people.

By being in community with others, I learned that mutual aid and community organizing are acts of love. I also learned that activism isn't supposed to be palatable or convenient. Change cannot occur without resistance to systems and institutions focused on accruing power. As a disabled person in a non-disabled world, I do not have the luxury to be apolitical.

My writing is a form of activism presenting ideas that provoke, inviting readers to interrogate their beliefs, and prompting action against ableism. So eight years ago, you wrote a manifesto about changing radio for transom, this website, and you wrote...

On radio, I want to hear people who lisp and stutter, gurgle, stammer, wheeze, repeat themselves, pause when needing to breathe, make noises when they talk, salivate and drool, communicate, enunciate, and pronounce differently, use different speech patterns and rhythms, use ventilators or other assistive technology, use sign language interpreters or other people that facilitate speech, use computer-generated speech.

I want to disrupt what's thought of as the default public radio voice. You know, Alice, I love that, obviously, and I've got Lisp covered. But as a radio person, I find it quite bracing and maybe even a little challenging to consider putting voices on the air that fall outside the center of the distribution of human speech patterns. Why do you think it's important that listeners not only hear different perspectives, but also different ways of speaking?

Thanks so much for quoting my piece for Transom. You know, I wrote it when I first dipped my toes in producing my first radio piece as a storytelling fellow for Making Contact Radio, an organization based in Oakland. I wrote it in hopes of starting a conversation and engaging with the radio slash podcast community and you know what? Crickets.

I received only a handful of responses and it just confirmed to me that the diversity in radio is just a hollow phrase that excludes disability. And let's face it, public media continues to have this very white, middle class voice in a tone that is supposedly easy on the ears.

Accents and disabled voices challenge those values and force listeners to make an effort which is antithetical to what is considered quote-unquote good radio.

It's easy to say and hard to do, but I would like producers to take risks in the kinds of stories they tell, how they tell them, and who gets to tell them. However, we exist in a landscape riddled by layoffs and cutbacks, where funding is more important than quality.

Maybe this is why I decided to produce and host my own podcast several years ago, Disability Visibility, that resulted in a hundred episodes, because I'm not waiting or begging for inclusion. I used to dream that I would have a podcast reporting on disability issues by a station like KQED and be picked up by NPR.

Nothing like it currently exists and it would be great if listeners right now asked themselves why that is. Just imagine, a program produced, written, and hosted by disabled people featuring disabled guests. Not only is this long overdue, but it's something the public needs and deserves. Again, Alex, see what I did there?

And just imagine I said that with an evil cackle. Oh, I could hear. You went on to record many people with disabilities through StoryCorps. And I was hoping you could tell us a few that maybe remain memorable to you.

About 10 years ago I formed a community partnership with StoryCorps, an oral history nonprofit that used to have a recording booth at the main branch of the San Francisco Public Library. I called it the Disability Visibility Project and encouraged members of the disability community in the Bay Area and across the country to participate by being in conversation with one another.

It became one of the largest partnerships in the organization's history with over 100 oral histories archived at the Library of Congress. It makes me feel really good knowing there's this collection available to the public that's preserved for future generations. For me, the project was a way of creating disability history taught from the people with lived experience and not through the lens of a non-disabled historian.

Several stories were selected for broadcast on local public radio stations and NPR, which made me feel so proud knowing our stories reached a wide audience. So let's listen to one of the stories you've chosen that aired on PBS. This is Colleen Kelly Starkloff talking to her daughter, Megan Starkloff-Breitenstein, about the first time she met her future husband, Max Starkloff, a disability rights pioneer.

Here comes this guy into my office, drop dead gorgeous. I was done, Megan, right then and there. Max was six feet five, sat very tall in his wheelchair. He couldn't use his fingers or his hands, but he could get his left arm around me to hug me, and that was fine with me, and I was smitten. How long did you guys date before he proposed? We dated for two years.

And when I told Grandma and Grandpa that Dad had asked me to marry him, Grandmother said to me, you marry a person because you love them not to be their nurse. And I said, Mom, I love him. And I won't be his nurse. I'll be his partner. I'll be the mother of his children. That blew their socks off. I knew adoption was how we were going to get you guys, but getting you wasn't very easy.

I remember a social worker coming out to the house and telling us how we wouldn't be good parents. I was devastated. Right. But Dad told her how wrong she was, turned to me and said, "Sweetie, get her coat. She's leaving," and kicked her out of the house.

And so when you came along, you changed our world because you were his little buddy. And when you were four years old, you were riding on dad's footrest in his wheelchair. I used to love doing that. Yeah, you had your feet between his feet on the foot pedals and you had your arms resting on his knees riding down the street. And who's at the gas station at the corner but the social worker. And he rode you right up next to her car.

and said, "I'm Max Starkloff and I want to introduce you to my daughter Megan. She's four years old." And then he wheeled away, never gave her a chance to say one word. I just feel very blessed that somebody gave you guys a chance. Everything we did, we did together. Going to your games, going to your swim meets, your father was there. I knew when I met Dad that this was a man who I could stand with and love. He was a man among men. Your dad was a giant.

Disabled love stories are so beautiful, and when was the last time you heard or seen one? Like, seriously. These are the kinds of stories that need to be taught and shared regularly, not as infrequent one-offs. Perhaps that is why I do what I do as an editor of anthologies and essays on my website. Hey, thanks so much, Alex. Thanks so much for having me, Alex.

This was a lot of fun. I'm Alexis Madrigal. We'll be right back with more right after the break. Welcome back to Forum. I'm Alexis Madrigal. As part of our new Legends of the Bay Area series, we've been talking with and about Alice Wong, a disabled activist, writer, and community organizer. You should check out her memoir, Year of the Tiger in Activist's Life.

We're joined by fellow activists who have influenced her and been influenced by her, Sandy Ho, executive director of the Disability and Philanthropy Forum, as well as Yomi Sachiko Young, an Oakland-based disability justice activist. We want to add one more voice into the conversation. Emily Flores is a journalist and founder and editor-in-chief of Cripple Media. Welcome, Emily.

Hi, thank you so much for having me. Thanks for joining us. We, of course, also would love to hear from listeners. Maybe Alice Wong has had an impact on your life or her work has changed the way you think about the world, whether you're inside or outside the disability community. You can give us a call. The number is 866-733-6786.

forum at kqed.org. Of course, you can find us on Blue Sky, Instagram, or KQED Forum. We've got the Discord community, of course, as well. Emily, so let's... You're 22 years old, kind of in the next generation of activists coming up, and you're in Austin. So when and how did you become aware of Alice Wong? Yeah, so...

So I feel like it all kind of goes back to when I was in high school, actually. So I, for anybody listening, I am a wheelchair user and I've always been a power wheelchair user because of my muscular dystrophy. And I actually had not made a disabled friend really until I was like about like 14, 15. And that was through onboarding.

I had growing up, I had a very, you know, kind of narrow minded idea about disability. I consumed a lot of the things that I heard and saw about disability. And it wasn't really until I was, you know, kind of preteen, teenager age that I went online and I found out that I was disabled.

I found this whole disabled community online. And through there, I became exposed to Alice's work. And that was genuinely, honestly, one of the most pivotal moments of probably my life, honestly. It fundamentally changed the way that I viewed myself and my body. Well, and how come? Like, was it just because of the kind of bracing politics of it? Like the humor, what part of it really spoke to you?

Yeah. So, so I think a lot part, like growing up was honestly, I felt really disconnected from, from who I was and, and from my identity. And that was largely because I found out that, you know, in society, we actually largely operate from viewing disability from an

individual model of disability, which means that we kind of have actually have two different models that we view disability through. So one through the medical model of disability and then the other through the charity model of disability. And as you could kind of assume, you know, medical model of disability kind of basically goes on to state that people view disability as something that needs to be cured or fixed.

And then the charity model is like something that, you know, disability is something that needs to be pitied and, you know, something that is essentially charity. And, you know, kind of growing up witnessing that, it was honestly, I don't know, I just felt really disconnected from it. I didn't feel like my life was very sad or charitable. I pretty much just spent most of my childhood watching, you know, Disney and eating Cheez-Its. So...

Not a bad life, not a bad life. Not too shabby, not too shabby. So, yeah, so when I became exposed to, you know, disability justice advocates like Alice and the introduction of a totally, you know, political understanding of my identity of,

of a community and the fact that we have culture that was truly, you know, fundamental to the way that I viewed myself. And I was like, wow, actually it's kind of really cool to be disabled. And that's exactly the way that I felt about it. I just, and so, yeah, so I guess it just gave me a whole new sense of confidence. And a new language and stuff too. Yeah. Yeah. I mean, it's interesting as we're listening to Emily talk,

For listeners, there is kind of a difference, right, from people who were born into a post-Americans with Disabilities Act world and those who came before that. Can you talk about how you've experienced those kind of moving across that threshold? Yeah, absolutely. Yes. Sorry, go ahead. Oh, sorry. I was just going to ask Yomi. Then we'll come back. We'll come back. Hey, Emily. I don't know you, but nice to hear your voice. I'm glad to be in community with you.

I feel like, yeah, I'm like the pre-ADA generation. I'm the generation of Crip Camp a little bit, sort of on the cusp of that. And again, Gen X, greatest generation. And so the ADA came into law in 1990, the year I graduated from high school. So, you know, I did not have a politicized identity around disability. In fact, I...

lived with a lot of internalized ableism and shame. And what I see as sort of this generational shift is not just that people are more politically engaged, and I think that social media, for all of its problems, has been really powerful in terms of building community amongst disparate people, people spread out all over, I'd say, the great disabled diaspora, which is all over the world.

And connecting us. And just as a side note, if you ever go to a dinner party at Alice's house, you might meet somebody from some far flung place in the world who has connected with Alice over social media and somehow made it to the bay and gets invited to a party. It's beautiful. I would say, you know, one of the things intergenerationally that was has had been difficult for me is.

is just terminology, just the way the lexicon changes, just the way language evolves. So when I was coming up, when you talk about charity model, we had the Jerry Lewis telephone and you had where they would trot out these disabled kids on television and beg people for money. And it went on for like hours. And I remember growing up at one point in the Bronx and there would be like a

truck or a van or something that would come through the neighborhood people representing the telethon asking for donations going door-to-door and I would hide because in my like seven-year-old mind they were gonna kidnap me or something and put me in this van and put me on this show it was just very scary and then you have younger generations that are embracing the word crip and

Which for me coming up, that was a super disparaging remark. I was called crippled by bullies. And it was a very painful word to have kind of thrown at you. And now...

I see in community people kind of reclaiming that word and using it. It's very like inside, like you can't call me crew. Yeah. Alexis, maybe we need to be better friends, but like, I don't need to, you don't need to. It's like, you don't need to, it's not a word for you. Right. But it's a word for us in community and we can use it and, and take power and, um,

Pride in that. And so I don't know if that's a veered off of the question, but there is this generational shift and sometimes attention. And I just feel like at this point, I'm not that old, but like I'm old in disabled years. I'm 52. And we and a lot of us, we don't live long. Right. Yeah.

We live lives of precarity, as Alice has often pointed out. And I never expected to live this long. And, you know, my job is to just like keep doing the work and keep organizing and also like yield the floor, like shut up and back off a bit and see what this next generation wants to wants to do and where to take it and like humbly and happily follow. Yeah.

Emily, tell us a little bit about your media enterprise, Cripple. It obviously is taking this reclamation and kind of running with it. Yeah, absolutely. And first of all, that was so incredible to hear, Sandy. Thank you so much for sharing. Yeah, I mean, I think so. Yeah, I mean, I guess kind of going off on that, like Cripple.

When I kind of found this whole disability community online, that's also when I found this really, really incredible movement of this group of young people, which I think was like originated on like Tumblr. It was like this like kind of older social media app. And there's like this group of young disabled people who were like reclaiming the word cripple.

And at first I was, you know, obviously I didn't really know much about it. And then kind of when I started to read more into it, it seemed, you know, like this whole, this whole sense of pride.

pride and community, but also like, you know, spite, honestly. And I just thought that was so powerful. And I really, really resonated with that. And kind of as I started, you know, to work as a journalist and to talk to more people, particularly to young people my age, I was like, oh, my gosh, like,

There are so many kids like me. I just felt so alone a lot of the times. And so when I met other kids like me, other young people like me, also people who were disabled who were slightly older than me and I could look up to, that really, really changed the way that I viewed a disability. So anyway, so I started to think about kind of like a platform and how we could make the biggest impact.

And through that, I was like, honestly, it would, I feel like it would be so great if we could, you know, name it after a movement like cripple. And, and, you know, a lot of people, a lot of the times, honestly, most commonly, it's like, oh, my gosh, like, who would name something for disability cripple? Like, that's disgusting. And I think, hopefully, you know, part of it is like, I really hope that, you know, somebody, if they do have that reaction, I kind of would hope that

you know, that kind of leads them to think that they don't know much about disability that they thought they did. You know, Sandy, in this particular moment right now,

You know, we've had already at the federal level a freeze on civil rights litigation. We've had dismantling of federal diversity, equity and inclusion programs. You know, some of the things that are getting rolled back were pretty hard fought wins. How are you kind of taking this this stance and this foundation of disability justice and kind of approaching these upcoming years?

Well, you know, I think that from Alice's work, what we learned is not only do lived experiences and stories matter, but lived experiences are also facts.

As we see the way the administration is moving, we've got to remember that these strategies, these policies, these programs are actually impacting actual community members and real lives and people. So, you know, as one of the principles of disability justice so clearly emphasizes is leadership of those most impacted. And when...

you know, we consider what is next and what is ahead. Certainly, hearing more, and this is so important,

to why Alice's work is important and vital, but there's also many more Alice Wongs in the disability community. And so there's opportunities for us to continue and build upon what exists. And to the point that Yomi shared earlier about the generational changes and shifts happening,

I came of age as the Americans with Disabilities Act was passed in 1990. And my childhood was a lot of being crowded out and talking about what a quote unquote special child I am. And there's actually...

there's no specialness to what communities are asking for right now. And that's the bottom line and that's kind of the minimum standard. And what we are trying to aspire and organize and build power around is actually how can we thrive and how can what Alice's wife's work has been about, like how can we all experience joy? So that's kind of what

I'm sitting with a lot in this moment. And the fact that we all have a role to play in advancing disability justice, right? That includes philanthropy, that includes media and culture, that includes the fact that another lesson that I've learned from Alice and our friendship is critical thinking. We got to continue to ask, actually really

really tough questions, uh, not just of ourselves, but our public leaders, um, and also the folks who are at the table making decisions. Alice and I have left events because we thought that the panel questions were boring. At a certain point, we've got to go beyond the surface level of, you know, uh, some of the more typical and generic issues. Thank you for staying with us. Um, Yomi, uh,

Here's my question. You know, when I think about Alice's long project of like increasing disability visibility and pairing it with disability justice in this particular moment, visibility strikes me as quite a vulnerable place to be. I mean, people may want to just kind of try and put down their heads for a few years and and wait it out. Where do you find the courage to want to stay visible on these topics and stay pushing?

That's so real, right? I want to say to my community and the folks that I ride with in terms of my political organizing, I get it. Like, it is scary. Just in this first week of this administration, we're just like whiplash from like...

you know, horrible executive order to the next horrible executive order and what is going to happen. And I think that that is both political theater and it's by design, right? I think the design is to, to, um, elicit psychological trauma.

And to push people further out into the margins. And there's a fight or flight, right, instinct. Like we want to put our heads down. I mean, I've talked to people very recently around the executive order to try to end birthright citizenship. They don't feel like it's their issue and they're like, eh. And I'm like, no. First of all, we are each other's business. Right?

We are each other's business and we need to start acting like it. And I, you know, I'm not shrinking. I'm not going away. Alice isn't going away. We cannot fall back. What we should do, though, is strategize. You need to find our people, organize where you can. We need to like flip every lever that we have.

We need to flip the disability rights lever, right? Because we're going to need to defend the civil rights and civil liberties that were hard won.

And also we need to organize systems of care. We need collective action, collective care. And this is not the time to shrink or hide. I mean, I'll just offer a little plot twist on the story core between my mom and I. I now am a parent.

I have a two year old. And like what kind of parent activist woman person would I be if I like grab my child and went, you know, fleeing under a rock or something like that? She deserves better than that. And I know better. And now is the time for us to like stand our ground and stand with each other.

Last few listener comments writing in, Alice Wong is amazing. Another listener writes, absolute legend. And another listener writes, I admire you and appreciate all you do, Alice. We, of course, this has been the first in our new series, Legends of the Bay Area. We have been talking with and about Alice Wong.

disabled activist, a writer and community organizer, founder of the Disability Visibility Project and author of the memoir Year of the Tiger in Activist's Life. As part of giving her her flowers, we have been joined by Yomi Sachiko-Young, an Oakland-based disability justice activist. Thanks for joining us, Yomi. Thank you for having me. Also, Sandy Ho, executive director of the Disability and Philanthropy Forum. Thank you, Sandy. Thank you so much. And Emily Flores, a journalist and founder and editor-in-chief of Cripple Media. Thank you so much for joining us.

Thank you so much. I'm Alexis Madrigal. Stay tuned for another hour of Forum Ahead with Mina Kim.

Hey, have you heard of On Air Fest? It's a premier festival for sound and storytelling taking place in Brooklyn from February 19th through 21st. I'm Morgan Sung, host of KQED's new tech and culture show, Close All Tats, and I'll be there at the fest to give a sneak preview of the show, along with an

IRL deep dive all about how to sniff out AI. You'll also hear from podcast icons like Radiolab's Jad Abumrad, Anna Sale from Death, Sex, and Money, and over 200 more storytellers. So come level up your own craft or connect with other audio creatives. Grab your tickets now at onairfest.com.