Transcript

Ai-jen Poo:
Welcome to Sunstorm, where we get real about what’s happening in the world and what we’re doing about it, because we are the light in the storm. Hello, I am Al-Jen Poo.

 

Alicia Garza:
I’m Alicia Garza, and we are beyond excited for our guest today.

 

Ai-jen Poo:
Beyond. When we say we are super fans, we are not kidding. We have been circling each other and following our guest, Alice Wong, for years now. Alice is a visionary in disability advocacy, the founder of Disability Visibility Project, the editor of two anthologies featuring disabled voices, and her memoir, Year of the Tiger, coming out in 2022, and we can’t wait. Alice, the warmest Sun Storm welcome to you.

 

Alice Wong:
Hello, my ray of sunshine.

 

Alicia Garza:
So Alice, I want to start off just by kind of talking with you a little bit about disability, and who disabled people are. And one of the things I think makes your work not just essential, but critical and powerful, is that you challenge beliefs about what disability is and what it ain’t, and who disabled people are. And over the years, I’m just wondering, have you had to challenge your own beliefs about disability? Even though you identify as disabled, how have you reckoned with that? And what can that maybe offer for other people who are trying to be better community members as it relates to disability?

 

Alice Wong:
Yeah. Thank you for asking that. I would say, first off, disabled people are everywhere. They’re a part of every community. And honestly, the way that my own beliefs had to be challenged, and frankly, unlearned is really because I was made to feel that my world and my lived experience was small and an outlier of what’s considered normative. I was born disabled in the early ’70’s, you know, about to approach 48 next year. And you know, I feel like there’s a constant othering and unpacking I have to do. It took me a really long time to kind of identify and even feel a sense of pride because, let’s face it, like capitalism … normalcy is a scam.

 

Alicia Garza:
Yeah. I love that. Normalcy is a scam. It’s the truth.

 

Ai-jen Poo:
And I think a lot of people don’t realize that there’s this whole history of disability rights activism and movement building. And the movement has been around for a long, long time, and powerful slogans and frames, like, “Nothing about us, without us” have come from this movement. I’m wondering, for those of us Sunstormers who are listening and may not be as familiar with the movement, what are some things that you think every movement can learn from this whole trajectory of activism and organizing?

 

Alice Wong:
You know, so much of this is rooted in being marginalized, and living in a world that was never built for you. And I think people on the margins truly understand power better. They understand who is centered. And I think this is um … this brings a sharper analysis of the way we move in the world. And so many days I’m made to feel like it’s on an individual level, in terms of process or problems or issues that are often reduced to an individual level.

 

But really it’s about systems and I think a lot of marginalized groups understand how systems work in terms of the way they punish, the way they criminalize, and the way they pathologize people. And I think that disabled people, especially, let’s say, disabled people involved in progressive politics and community organizing … they have such a wealth of experiences that I do not think those change-makers, using air quotes, “good progressives,” these well-meaning kind of people, they want to be allies, but they won’t, let’s say, have alt text in their images.

 

Or they might complain about somebody’s podcast not having transcripts. You know, access is for everyone. And when you build your work or when you build anything, think about the people that are missing. Think about who and what is missing. And do not be fragile, do not be defensive when somebody says, “Oh, hey, I’d love to join this webinar that you’re organizing on voting rights, but I don’t see an ASL Interpreter.” Let’s be proactive.

 

And if people really want to build coalitions, they will highly value and pay disabled people to be part of their staff. And I want to see disabled people in leading roles across all social movements. ‘Cause that’s…we should have disabled people leading the way because everything will be better.

 

Alicia Garza:
I was reading our background notes on you, Alice. And there was something that you said that I found very profound. You talked about how being an activist was not a choice for you, but it was an act of survival. You’ve also talked about the ways in which you’ve struggled with being called an activist because of the way that we talk about what activism looks like and what it’s rooted in. So, how did you go from that point to where you are now, which is advocating for others, creating space for others, and also working with others and organizing for systemic change?

 

Alice Wong:
I really didn’t have a choice as a young, disabled child because there just really wasn’t any support or recognition of what I needed or wanted. I didn’t even have … felt like I had permission to sit down. Here I am almost 48 years later, having gone through this pandemic, and I’m still fighting really hard just to survive. Just this past pandemic, we’ve seen so many groups — disabled and older folks — as disproportionately impacted.

 

So many of us are at higher risk for getting the virus, are at higher risk for dying from the virus. I was pretty outspoken last year telling my own story as somebody who uses a ventilator about my fears, because at times of crisis, our society really shows who is disposable. And hospitals, some of them were … they had triage protocols. There was healthcare allocation. They were judging and deciding which patients who deserved care, those who didn’t…those who were going to be deprioritized for care.

 

So much of this is predicated on ableism and racism. And the fact that eugenic ideas, the idea that some bodies, somebody’s experiences, some abilities are much poorer value than others. Eugenics is very much alive today, and I think this is a thing I wish more people understood. 2020 was a shit year. I thought, “Okay, 2021, we’re going to get through this together.”

 

But again, I was really forced in a position to survive and also create as much media and community and ways for us to really push back against all the forces that basically do not care if we die. And I know that sounds overdramatic, but it really isn’t. And you know, the clearest example of that is vaccine equity. And very clearly, a horrible rollout. I wish I didn’t have to survive, to work so hard.

 

So I actually feel like the word resilience is something I try not to use too often because I feel like that is again a focus on the individual, versus the communal, or the collective, or systemic. And that to me is where, why do we consider it a compliment to be considered a survivor, or resilient when we don’t really interrogate the conditions that created this? Anybody who struggles, whether you’re an activist or a movement maker, we deserve rest, we deserve all the flowers while we’re still alive. We deserve luxuries. They may be small. They don’t have to be material. But we deserve it all. And I think-

 

Alicia Garza:
Beautiful.

 

Alice Wong:
… we sometimes feel like there’s another aspect of activism, or maybe just the perception of activism that there’s some sort of weird purity that if you are an activist, if you’re down for the people, you have to suffer. Or that you have to sacrifice. You have to put your literal body on the line, or that you have to live in poverty. And I feel like those things really keep a lot of people out. I want to see community organizers really try to open up and try to meet people where they are. I think that’s the only way to build coalitions. It really is the way to build solidarity.

 

Ai-jen Poo:
I want to talk a little bit about solidarity. Alicia and I have been in the Domestic Workers Movement for a long time. And this is another group that has been treated as disposable and a place in our economy and in our society where you can see, very clearly, that there is a hierarchy of human value. And one thing that I learned early on is that people with disabilities have also been excluded in our law and policy, in all of our systems, but specifically in the same minimum wage laws that domestic workers were excluded from.

 

And that it is perfectly legal to pay a person with disabilities less than minimum wage for working. And that is absolutely unacceptable. And there’s so much potential there if we start to recognize all the ways in which different communities have been disenfranchised through exclusion. And if we were to all come together, like you have talked about and catalyzed in your hashtag, I think that we would have the power to change so much.

 

And one of the things that’s been so inspiring to me in this moment is to see worker rights groups, domestic workers, home care workers, unions join together with disability advocates and older adults and family caregivers to fight for a care infrastructure that actually supports dignity, independence, and quality of life for everyone. I want to talk for a minute about this piece of the Biden jobs plan that specifically invests in home and community-based services for people with disabilities and older people. Can you talk to us a little bit about why that has been a rallying cry for the disability community for such a long time?

 

Alice Wong:
I feel like there have been decades — no centuries — of people who have been segregated and institutionalized, and if we really want to care about collective liberation, our freedom is tied up with your freedom. And institutions, to be honest, long-term care facilities, nursing homes, are forms of incarceration. And I see a lot of potential in terms of so many people that are abolitionists who are also disabled as well.

 

And I think that’s terribly exciting to see, but also I think there’s a policy priority where by saying care work is infrastructure, it really is a statement of how important and how interconnected we are. We’re reaching a window. There’s a real potential to make the entire ecosystem better for everyone. For a long time, I think, still, even now, disabled people have to ask to be included.

 

And just to be a little salty with you both, I see a lot of conversations, panels and conferences about long-term care or caregiving that tend to be centered on providers and advocates and family members and politicians and policy experts, but it’s still actually rare to see a range of actual users of long-term care. Those people that live in those communities and institutional settings.

 

And you know, there’s something also about, that tendency to silo disabled people at conferences where it’s about disability rights or accessibility. When realy, you know, we have such rich wisdom about policies and the way these do or do not work because it’s we’re enmeshed in these systems. And you know, that is something that’s just a gentle call in to people to really be mindful of that. I also think the bar is so low to say we deserve to be included, but I do think, with this, hopefully, this movement, this initiative to have care work funded, fully funded and really robust … I think it’s going to be wonderful in terms of protection for workers and valuing workers, but also really reflective of what disabled people need or want.

 

Alicia Garza:
I think that’s an important point. And I had not thought about the experience of caregiving inside of institutions, and I think it would be a very helpful perspective to help round out how we’re talking about caregiving. So thank you for that. I do have a question for you just following on this continuum of care and caregiving and COVID. We’ve talked about going back to normal. And I know in our conversation today, we do have to be mindful of language because words mean things and words set precedent, they set tone.

 

And so we’ve been using these words talking about this pandemic where we’re talking about going back to normal when things were not actually normal before, and they were not good before. And then we’ve also been talking about where we’re headed. And there were a lot of things in an uncertain terrain that did not go well. We saw the best of each other and we saw the worst of each other. And it was all on display in this last year and a half in ways that I actually think were really important for the country.

 

My question for you, Alice, is, in this moment that has been so indelibly shaped by COVID-19, what can we learn about care? And what would you say about what we can bring forward from this moment about care that really we need to keep doing? And what are some of the things that this moment is giving us an opportunity to just say, “Hey, we’re not doing this like this anymore. We deserve better. We’ve got to be better for each other, for the world, and for our communities.”

 

Alice Wong:
The first response is, all last year during all the stay-at-home from March to December last year, I only went out once in my entire time for the flu vaccine. And even now, in 2021, I’ve only been out twice to get my COVID vaccine. And I know that people are just like, “Get ready for a hot girl summer.” And want to all hang out. And I feel this, but also, I don’t feel 100% safe. And I know that a lot of people within the various disability and chronic illness communities don’t feel safe yet.

 

We still have a lot of people that are not vaccinated, we have people that make mask-wearing a political thing. So, there’s still a lot of danger out there. And I think, for me, what I learned about care is that, every person has the capacity to care. It’s not this kind of one directional kind of relationship where I give you care, then you receive the care. I also think that care is not transactional. Like I care about you, don’t stop because you care about me if I don’t, that would be nice.

 

But I think it’s not transactional and our society loves to monetize things. And at the core of it, care is not transactional. What I love about for disability justice, some of those principles for disability justice, to which, shout out to the Bay Area. It was originated around 2005 by queer disabled women of color. Some of the principles are all of this. That you are perfect as you are. So that’s basically about self love and self care. But also no one gets left behind.

 

And this idea to bring everybody with us. And that, to me, actually is a form of care. Because at the end, liberation is not going to happen until it really reaches everyone. And that’s a further extension of what we mean by care. I feel like interdependence. Like, I would love to see, during the pandemic, see the way mutual aid has really flourished and I would love to see this become more commonplace, not just in times of crisis.

 

I love my friendships. My friends, over the pandemic – as somebody who’s not really seen my friends in a long time – I like to send gifts and cards, handwritten letters, and this week in particular. I sent a few friends rainbow cake for pride. I’m so excited because I’m like, I think to myself, “You get a gift. You get a gift.” Everybody gets all the cakes, all the cookies, all the treats, whatever gets you going. But that’s been my love language and a way to show care. I think we should all be very creative in how we show care, because that shows that they are wanted, that they belong. That’s what care is about.

 

Alicia Garza:
We are all care recipients and providers, and we should be more creative, including sending rainbow cakes.

 

Alice Wong:
Especially rainbows. Just all the glitter, all the rainbows. Just whatever makes you happy.

 

Ai-jen Poo:
You’re making me want to put on my rainbow earrings.

 

Alicia Garza:
I want to talk about your memoir, talk to us about The Year of the Tiger and give our listeners a sense of what they can expect and why they need to hustle, hustle, hustle to get it on pre-order when it’s ready.

 

Alice Wong:
I’m very excited about my memoir. I am turning 48 this year, which is-

 

Ai-jen Poo:
Hey.

 

Alice Wong:
… The Year of the Tiger.

 

Ai-jen Poo:
I’m a tiger too. You and me. Tiger Power.

 

Alice Wong:
Tiger power. I’m so excited. This is wonderful. But I’m really excited about this memoir because I want it to be fun. It’s not going to be full of trauma, it’s going to be embedded in joy, in pleasure, and it’s going to be also about the work. And I do hope that’s where the audience is. It’s really for activists because, I can’t think of another memoir or book by an Asian American disabled activist…about activism.

 

Frankly, one thing that I’m super salty about, that’s why I do my work, is the fact that so much of what they think of as disability rights and disability representation, is overwhelmingly white. Part of the joy and privilege of doing what I do is to really amplify disabled people of color. So I think … I really do hope that this book speaks to so many different groups across different communities. It’s for all my Asian-American homies, all my disabled homies but also to any kind of activist or community organizer.

 

It’s not a blueprint, but really just an invitation to this is how I try to be where I’m at, and hopefully it’ll be helpful because I think there needs to be more diverse depictions of what activism looks like. It’s not glamorous. A lot of people just don’t know what’s involved.

 

Alicia Garza:
I love this. So, basically you’re telling us what we can expect from your book is like you wrapped up in a little package that when we open the book, we get all your sun beams, all your layers, and we get your joy.

 

Ai-jen Poo:
Yes.

 

Alicia Garza:
I’m really excited to read it. Can you tell us when it’s coming out?

 

Alice Wong:
Yeah. So, I think it’ll be out in the fall of 2022. Both of you will get an autographed copy. But this was the one source of joy for 2021 for me.

 

Alicia Garza:
It makes me so happy. Thank you so much, Alice, for all of your wisdom and your work, and for bringing so much joy to us and to everybody else. Please make sure to follow Alice in all of the places @SFdirewolf and DisabilityVisibility. You will learn so much and smile so much. And as soon as you can, pre-order her memoir Year of the Tiger. And then of course, go ahead and get those two anthologies she has also edited. We cannot wait. Come on. Thank you all, and we will catch you next week.

 

Ai-jen Poo:
Thank you fam. Thank you, Alice.

 

Alice Wong:
Thank you, guys.

 

Ai-jen Poo:
Sunstorm is a project of the National Domestic Workers Alliance in collaboration with Participant. Sunstorm is executive produced by Alicia Garza, Ai-Jen Poo and Christina Mevs-Apgar.. Sun Storm is produced by Amy S. Choi and Rebecca Lehrer of the Mash-Up Americans. Producers are Shelby Sandlin, Mary Phillips-Sandy, and Mia Warren. Original music composed by Jen Kwok and Jody Shelton.

 

Alice Wong:
The three of us are sun beams coming right through the clouds, right into the eye of hurricanes.