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Disability Visibility with Alice Wong & W. Kamau Bell

Monday, October 19, 2020
6:00pm Pacific Time
KQED Broadcast: 10/25/2020, 10/27/2020, 10/28/2020

Watch the webcast on YouTube now →

We've made a recording of this event free to all. Please support our institution and these productions by making a tax-deductible contribution.

Alice Wong (she/her) is a disabled activist, media maker, and consultant. She is the Founder and Director of the Disability Visibility Project® (DVP), an online community dedicated to creating, sharing and amplifying disability media and culture created in 2014. Most recently, she is the Editor of Disability Visibility: First-Person Stories from the Twenty-first Century, an anthology of essays by disabled people.

Sociopolitical comedian W. Kamau Bell is the host and executive producer of the CNN docu-series United Shades of America with W. Kamau Bell and author of The Awkward Thoughts of W. Kamau Bell: Tales of a 6′ 4″, African American, Heterosexual, Cisgender, Left-Leaning, Asthmatic, Black and Proud Blerd, Mama’s Boy, Dad, and Stand-Up Comedian.

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City Arts & Lectures Disability Visibility. Alice Wong in conversation with W. Kamau Bell. Livestream, Monday, October 19. 6pm Pacific / 9pm EasternW. Kamau Bell:  Hi.  My name is W. Kamau Bell.  Welcome to City Arts and Lectures.  Tonight I’m in conversation with Alice Wong, my friend and author of the book, Disability Visibility, which is out now.  

I’m excited to be here.  I want to let you know you can submit your own questions in the chat function or by tweeting @cityartssf or with the #DisabilityVisibility.  

Tell you a little bit about Alice.  Alice Wong is a disability activist, media maker, and consultant.  She is the director of the Disability Visibility Project a community partnership with storytellers and amplifying disability media and culture created in 2014.  

Alice has done a lot of things.  She’s one of the people in my life I’m lucky to call a friend.  She’s somebody when she reaches out to me I take it seriously.  She’s one of those people in my life who pulls my coat when I’m going down the wrong path.  I appreciate her friendship.  She’s a Denzealot.  It’s a Denzel Washington zealot.  More importantly, my friend, and I’m honored to be here.  How you doing Alice?  

Alice Wong:  I’m alive Kamau.  How about you?  

W. Kamau Bell:  I feel similarly.  How are you doing is such a loaded question in the 2020 pandemic‑social unrest‑election era.  I would imagine as a person with disabilities it’s always a loaded question.  How are you doing in this doubly loaded time?  

Alice Wong:  I feel like it’s a lot.  You know, there’s just so many things that’s happening every day.  But also cumulatively, I feel like everyone is very overextended, but I feel like not just disabled people, but I think so many marginalized communities are just, you know, at capacity in terms of just the unending kind of existential threats to our existence.  

So there’s that, but I think at the same time, you know, there are pockets of joy.  And, you know, pleasure and just abundance.  There’s a lot that’s still gives me hope.  And I think it’s a very weird time to have a book out.  But I think it’s also a great time because we need culture.  We need, you know, something to give us ‑‑ keep us going and just keep us engaged and thinking.  So, you know, it’s the highlight of my week to me talking to you.  

W. Kamau Bell:  I mean, I think what you said is so right.  Maybe it is a strange time to have a book out, but it seems like a great time for a book like this because many of us who are not disabled are thinking about accessibility, health care, how to navigate the world in a way we weren’t thinking about it before.  Can you talk about ‑‑ what have you seen about non‑disabled people going through things that people with disabilities go through all the time?  

Alice Wong:  First of all, like, you know, I did kind of have to laugh and, you know, privately guffaw.  Because, you know with the lockdown first happened, especially San Francisco was one of the earliest cities in the country to have this, you know, shelter‑in‑place order.  You know, people definitely freaked out.  I mean I think for the first time nationally and globally, you know non‑disabled people had something taken away from.  That thing I’m talking about is convenience.  The thing I’m talking about is, you know, their privilege to take up space, to navigate any space they wanted.  

They are like what?  How is this happening?  What is this thing called Zoom?  Why do we have to be more flexible?  And I think this is ‑‑ there’s a really kind of bittersweet feeling about this.  Not just by me, but just by a lot of other people who are, you know compromised, chronically ill, house bound.  Folks have been like, we told y’all.  And we’ve been doing this for years, if not decades, y’all.  And it’s like you finally got the memo that accessibility matters.  That having different options in terms of online and in‑person, you know.  I think there’s another thing that just kind of drives me up the wall is the fact that suddenly people realize time should be elastic.  That, you know, capitalism has really done a number on us in terms of how do we think about work?  How do we really get our needs met and are there for one another in new and different ways?  

So if there’s any sort of silver lining to come out of this is the fact that I do hope that workplaces, cultural institutions, you know, everyone and everything think about the ways they can integrate flexibility and accessibility going forward.  And I really want to give a shout‑out to like City Arts and Lectures for just having me on.  I think it’s pretty significant to have a disabled activist/writer/editor part of this series because I’m not a high‑falutin literary person, but I think it’s very significant to have that.  And the fact that this is, let’s face it, one of their first online events that have ASL interpreters and captioning.  And that is something that was part of my rider for this event and all my events because I want people to have this as the baseline because so many disabled people shouldn’t have to fight to ask for these things.  This should be the bare minimum and we can all pull forward that brings everyone together.  

W. Kamau Bell:  I’m glad you brought that up.  We were talking about it before we came on that this is not the regular City Arts feature with the interpreters and the captions.  And I remember we’ve ‑‑ we can talk about how we met if you want to tell that story.  I’ll happily be a part of that.  We talked for United Shades of America the idea the things that make the world more accessible for disabled people make the world accessible for all of us.  At the time we talked about curb cuts.  Every parent with a stroller or people walking and just want to use curb cuts, we don’t realize are there because of the ADA.  When you say captions, I think about the fact I’ve become the person that uses captions all the time.  It does make my life watching movies and TV easier and that wouldn’t be there if not for the disability activism.  

Alice Wong:  Yeah.  I feel like this is another we want to talk about election.  I say that with quotes and side eye.  But, you know, access should not be, you know, the responsibility of disabled people.  That this is ‑‑ if there’s one thing that non‑disabled people should do is to say hey, I’m going to be on this event.  Will there be interpreters?  Will there be captioning?  Or let’s say there’s a panel on diversity.  You as a non‑disabled ally should say, do you have disabled people?  

W. Kamau Bell:  I hear you.  

Alice Wong:  There’s a lot of ways people can just speak up and just not put it all on us.  

W. Kamau Bell:  Well, I just realized I’m going to be at City Arts and Lectures again with the Department of Journalism from UC Berkeley.  I don’t know if this is my official rider.  I know City Arts and Lectures is listening if I can have interpreters and captioners.  Thank you for calling me out and sub tweeting me out right now.  

Alice Wong:  See what I did there?  And this is what it takes.  This is maybe ‑‑ I’m the virus.  Maybe I am the virus that you’ve always been looking for, Kamau.  And I’m happy to infect you.  In fact, I’m infecting everyone right now.  You know, because let’s face it, there’s a lot of ableism out there and maybe this virus will undo it.  

W. Kamau Bell:  Hmm.  

Alice Wong:  There’s a metaphor there somewhere.  

W. Kamau Bell:  Do you want to tell the story about how we met?  

Alice Wong:  Sure.  It all starts on a little bird app called Twitter.  You were podcasting and having this really delightful series all about Denzel Washington.  

W. Kamau Bell:  Yes.  The podcast was called Denzel Washington is the Greatest Actor of All Time Period.  

Alice Wong:  Period with a DT.  Period.  

So my friend, Adam Hartzell, who follows you, he was listening to one of your episodes and you two were talking about the Hunter.  I think you or Kevin mentioned maybe we should have a disabled person talking with us about this movie.  

And then Adam was gracious enough to tweet you and tag me saying, hey, I have a friend @SFdirewolf.  That’s me.  That’s how we got connected.  And I think, I mean I had a great time.  I think maybe your podcast.  I don’t think it was one of the first.  I wasn’t really a guest on a podcast.  I think I had a hilarious time talking to you about it.  What were your thoughts about that?  

W. Kamau Bell:  I mean I love how it came together the fact that it was through the bird app.  I have to be reminded sometimes good things can happen from the bird app.  I love how it came together very organically and then you came on and as you just did when you told me to make sure that City Arts and Lectures has captions and ASL on my next event here, you did that same thing where you sort of like a Jedi walked me through and explained things to me and then sort of let me answer the questions for myself.  Like in The Bone Collector, Denzel Washington is confined to a bed.  And you talked about all the machines and things he had access to.  You said he’s one of the one‑percenter disabled person.  I had never thought about that before.  Not every disabled person would have access to all that equipment, and how the movie made him have more access, but also didn’t let you know that that’s how all disabled people are living.  

Alice Wong:  The thing I loved about that film was, you know, number one, Denzel clearly is awesome.  

And the fact that he is able to fight back.  

W. Kamau Bell:  Yes.  Yes.  

Alice Wong:  I mean he has a great hunch chomping on somebody’s neck is wonderful.  I’m all for that.  I do think that one of the things that also resonated to me was the fact that he had, you know, home health aides seemingly 24/7.  

W. Kamau Bell:  Yes.  

Alice Wong:  Hmm.  This is not exactly what a lot of people out there do need assistance.  That’s not the reality.  I think that was a very ‑‑ 

W. Kamau Bell:  Well, I think the thing that you are so great at is sort of taking these opportunities and turning them into teaching moments and I see you do that on Twitter all the time.  And also finding in the big news story the thing that is not being covered that can sort of address and sort of connect to the people with disabilities.  And your book Disability Visibility is all about that.  And even in the way you put it together, you could have just written a book yourself.  You know, you could have just said I’m going to write a book about my life and my experiences.  You could have done something selfish like I did.  But what you did instead was to curate a book.  Why was it important to do that instead of writing a book yourself?  You curated a book with different voices in it.  

Alice Wong:  Yeah.  First of all, I don’t think I’m all that interesting to be honest.  

W. Kamau Bell:  I would disagree.  I don’t want to interrupt you, but I disagree.  

Alice Wong:  But I think one of the things that really gives me joy, to be honest, is really the fact that there are so many amazing, brilliant, creative disabled people out there.  

And what gives me joy, but also part of my rage, the very real rage is the fact that most people don’t really know about them.  And I think, you know, what can I do to flex my power and privilege?  When I did get this book deal it was somebody from Vintage Books, her name is Catherine Tung, T‑U‑N‑G.  She e‑mailed me out of the blue in the summer of 2018.  Hey, do you have any interest in editing an anthology?  Why yes I do.  Yes I do.  And I think it’s, you know, these are the kind of opportunities that I know don’t come around very often.  And speaking of the bird app, I think maybe that’s how she found out about me because, you know, people just tend to follow and I get myself out there different ways.  So I’m grateful for that as well.  It’s not all just really social media is.  It has brought me together with other people and to be a platform.  It’s a very real platform.  I don’t take that for granted.  I think what I really wanted to do with this anthology is just give a snapshot of the incredible diversity and range of views and really a snapshot of the here and now.  So these are stories published within the last 20 years and I think to me that’s really important because we need to talk about what is currently the passions, the work, the issues, the everyday lives of disabled people.  I do hope this book really encourages people to dig deeper and want to learn more and discover more.  

So in the back of the book I have a reading list and resource list.  So for the people who are just new to disability, you know, to disability culture or disability community, I do hope this is a stepping point, jumping point.  And for those who are already part of the community, I hope they feel seen and heard and that they feel like, wow, this is something for us and by us.  Because to me that was the objective first and foremost in my mind that the audience, that the work is really centered on us.  Because it’s still a rarity.  And I think, you know, I did kind of use my Jedi powers in the, you know, introduction.  I called out the publishing industry.  

Why is it that here we are, 2020, and there isn’t a disability specific imprint at one of the major five publishing houses?  

I mean there’s ‑‑ I want to see more disabled writers being published.  Also disabled editors and disabled people in publishing who have the power to create these books.  Really that’s where you’re going to get the most authentic and most interesting pieces because being an editor gives you a lot of privilege on the choices you make.  And I was very intentional about the pieces I selected.  

W. Kamau Bell:  You said something very interesting there, and we talked about this before, the idea that if anyone is new to the community, the disabled community, and I think that the thing I learned from you is if we feel new to it, those of us who are not disabled it’s because we’re not paying attention or because we’re ignoring.  

As it says on the back of the book, one in five people in the United States live with a disability.  They are not all visible as you also covered in the book.  Just the idea those of us who are not disabled, I would say we run away from thinking about this.  What do you think about that?  

Alice Wong:  Yeah.  That’s very real.  I think, you know, I feel like it’s a little bit basic, but I think, you know, stigma is still a thing.  Ableism is still a thing.  Ableism is enmeshed in our everyday lives the same way white supremacy is, to be honest.  They are really intertwined.  For people who want to ‑‑ who are working on unravelling and unlearning white supremacy, I also welcome to assign you to unlearn ableism.  And that’s a thing we can all do.  Not just non‑disabled people, but disabled people as well.  There’s internalized stuff that really do a number.  So there’s a lot of work that can be done.  But I think it will all get us to move toward justice and I think that’s in the end the goal.  At least that’s my hope.  

W. Kamau Bell:  I think it’s a worthy goal and I think you are working very well towards that.  I think the idea that ableism is a part of white supremacy as far as I can tell because when they say white supremacy they are not including disabled people in white supremacy just like they are not including Black people in white supremacy.  As the book points out, you can be both.  You can be a person of color and disabled as you know.  

Alice Wong:  Yeah.  I feel like especially in this pandemic time, you know, we’ve seen the many people survive COVID, but they are going to be new members of the disability community.  So it’s one in five now, but, you know, pretty much we’re going to see an entire new generation of people with really a long‑lasting, permanent consequences of this virus.  

So that’s something to really think about, too.  That, you know, whether people realize it or not, everybody knows somebody with cancer, with asthma, with diabetes.  I mean whether people are ‑‑ think about it or not, they are connected to disability and that’s again, like every single political issue is a disability issue just like every single issue is a Black issue.  I think we have to really go beyond these silos and binaries and burn it all down.  

W. Kamau Bell:  There are no more binaries in any issue is something we can learn through the pandemic.  

Alice Wong:  Yep.  

W. Kamau Bell:  I love the book.  I haven’t said that outright but I want to be clear about that.  I love you.  I also happen to love your book.  These two things can be true.  I think the thing about the book that is so impressive, because it is many different voices, it’s ‑‑ even though it’s not a thick book by size as I hold it up to demonstrate ‑‑ it’s not thick by size.  It is a thick book by ideas, but it also is very ‑‑ it’s well put together, well written.  It’s entertaining.  It’s even when it’s troubling it’s entertaining and just the variety of ideas it’s quite an accomplishment to pull off and yet at the same time it is not, as you talk about, disability 101.  Talk about pulling all that off.  

Alice Wong:  Yeah.  I think part of I guess it’s really so much of my life I didn’t realize led me to this moment.  The fact that I admire a lot of people, a lot of work by disabled people.  I’ve been tracking, bookmarking things like a fan.  Like I just at the heart of this book is really other events, this is a big ‑‑ this is a valid time that I want to share with people because these are things that I love.  These are people I love and admire.  So I’m just thinking of slowly just quietly collecting these works and in the creation of this book I had a huge spreadsheet.  Oh, look at this.  

You know, these really were I think selected intentionally to give people just a range and a taste of what’s out there.  And just different kinds of stories.  

These are all disabled people, but they are not necessarily talking about disability.  They are talking about their lives, their work, their passions.  These are activists.  These are scientists.  These are parents.  These are all kinds of people.  And I think that’s, you know, part of the purpose of this book is just blow people’s minds and their preconceptions of what kind of stories are out there because there’s so much more depth and nuance.  I think especially, you know, mainstream media it’s very basic.  Overcoming or inspirational stories or often the other stories about tragedy, pain.  It’s not all about trauma.  It’s not all about suffering.  

And, you know, let’s also face it, essentially in journalism and again with your upcoming event with the school of journalism, you know, where are the disabled journalists?  Why aren’t there more disabled journalists out there?  Because they are out there.  But are they in these rooms?  Do news organizations actually have a disability beat?  Do they think about the disability community as one of the many communities that are not reflected in their demographics or in their coverage?  Are they one of these that really annoys me is so many stories, especially in the news, you know that’s about disability is through a non‑disabled lens.  

Some of the leads or titles I just shake my head.  I’m just like oh you silly ableist rabbits.  Oh.  Just oh.  Yeah.  I’m just like ready for a media takeover by disabled journalists.  That is the goal in my mind.  That is one of my goals.  Not so secret goals.  

W. Kamau Bell:  I have to say one thing I think we have in common is we are both powered by rage, but people don’t realize it because of how we present ourselves and how we put ourselves out in the world and how we turn our rage into other things.  I’ve always noticed about that we’re both powered by rage.  

Alice Wong:  Absolutely.  The rage is often I think told through comedy.  I think, you know, just like you, you know, ranting or just lecturing people is not going to cut it.  You know, I do think that storytelling is incredibly powerful, but also laughing about things and poking at the absurdities and just asking good questions that I’m just basically a curious cat.  Like that’s just ‑‑ that’s basically what I am among a lot of other things.  But asking good questions.  Seeing the funny part of like the darkness and the absurdity is a way to get through because I think if we can’t laugh ‑‑ I just ‑‑ it’s a survival thing, but also a way I think to kind of change minds.  

W. Kamau Bell:  I think that’s true.  I agree.  One thing that’s important about what you said about a disability takeover of journalism or let’s say the whole media.  I want to join you on that whole goal.  One thing you talk about in the book is disability is not a monolith.  If you have a disability takeover in media it automatically isn’t a monolithic takeover.  It’s LGBTQ plus.  It’s every race.  Every religion.  Just by the nature of the fact that disability affects everybody.  

Alice Wong:  We already are a part of every community.  I think that’s just a thing.  I do think like with activism and social movements and social justice there’s a lot of people that, you know, don’t even realize that there are disabled people in every movement.  There are ways, especially with activism, that needs to be more accessible and inclusive.  That it’s not all about, you know, rallies and marches.  It’s about how do we open the ways up for everyone to participate?  I think that to me is also really important, especially in this year, and we are now about to reach into this election day.  

W. Kamau Bell:  Yes.  We will certainly get to that because I’m fascinated ‑‑ I follow you on Twitter.  I know many of your thoughts.  If you have any new ideas I haven’t retweeted.  Were there any essays in the book that surprised you or you were taken aback by?  Or favorite essays.  

Alice Wong:  Favorite essays.  I will say that I wrote this in the introduction.  You know, I was very deliberate about the very first essay is from 2003 in the New York Times.  This is an essay that was really personal for me because when I read it, it just, you know, I was just like kind of squealing internally and just cheering.  I felt so sane.  It was in the New York City.  I think that’s another thing, too.  There was such a powerful piece about her everyday life and her interaction with, frankly, a philosopher who believes that disabled infants should not live.  I mean this philosopher who is really well known who has all the platforms and accolades, he’s straight up genocide and eugenics.  And you know, these ideas are not relics of the past.  And these ideas are white supremacy.  These are interlinked.  The fact that some people are still not seen as human.  Some people, especially, let’s face it, in this pandemic, are seen as disposable.  We’re seeing people ‑‑ I just ‑‑ it just drives me bananas that it took this pandemic for people to realize that medical racism exists.  That, oh, Black and brown and indigenous people disproportionately impacted.  Why is that?  Is it part of their genes?  No.  It’s not.  It’s about the system.  It’s about racism.  It’s about colonialism.  

I just, you know, find it so like ‑‑ it didn’t take us.  It took people in the broader people to wake up to it.  I think it’s also a time to break all of these things with also ableism.  The fact we have this pandemic.  We have all these discussions about, oh, don’t worry, it’s only those people.  Those high‑risk people.  They are the only ones that are going to like be the most impacted which we know is a lie.  We know that’s now a lie.  And oh, you know, prisons and there’s outbreaks everywhere.  We still need safety.  We still need to keep people incarcerated because that’s the way it’s always been.  No, it’s not.  Right?  Like abolition has been some of the things people have been working towards for decades, if not longer.  

So there’s so many things that truly show the very explicit ways how that some people aren’t valued.  This is beyond capitalism as well.  This whole push to restore the economy.  

At what cost?  Exactly.  Do we respect people that are higher risks to be definitely at home?  Just to tell you straight up, I have not left my house once since mid March.  

W. Kamau Bell:  Wow.  

Alice Wong:  And, you know, the way things are going, I don’t think I will be unless it’s really necessary until late next year.  The only time I’m going to go out is coming up later this October, and that’s to get a flu shot.  

W. Kamau Bell:  Wow.  

Alice Wong:  You know?  I am keeping my fingers crossed that, number one, my wheelchair and equipment does not break down.  Number two, that I don’t have anything urgent medically that I have to go see the doctor.  But also just like I can’t believe it.  Flu shot.  That’s going to push me to venture out.  It’s going to be through drive‑through.  I am not going inside anywhere if I can avoid it.  But this is going to be my reality for a long time.  This is the same for millions of people around the world.  And the fact that so many people who survived COVID‑19 will need so much support and understanding and just, you know, there’s going to be a lot of people who, yeah, do not feel safe.  I don’t feel safe.  

W. Kamau Bell:  You said so much in that and I think I want to highlight the idea you said you haven’t been out since mid March and don’t know when you’ll go out again except to get something medical that you need; a flu shot.  

Alice Wong:  Something desperate.  If I have to do something.  Maybe I have to.  But I’m going to try to avoid it.  

W. Kamau Bell:  When you said it, it reminds me the other reason as an Asian person it’s dangerous to be outside.  It’s not our president.  He’s not you or my president.  The President of the United States, Donald Trump, has targeted Asian people.  Chinese people, but therefore Asian people because racism knows no ethnicity.  And blamed Chinese people, Chinese for the COVID‑19 virus, therefore blaming all Asian people and there’s been an uptick in hate crimes against Asian people.  

Alice Wong:  Yeah.  Again, you know, it’s a great kind of time to question like who is an American?  Not ours, but the broader public image defaults to a white person.  Right?  And everybody else is, you know, open to interrogation.  You know, the fact that, you know, so many people are told to go home.  California, this is my home.  Texas is part of Mexico.  That’s home.  We kind of forget about that.  It’s an all out kind of, you know, assault on who is ‑‑ who belongs.  Right?  Again, this is an administration that has shown by their policy changes, for example with immigration that what kind of people do they want in?  What kind of people count?  There was a public charge rule that was recently passed by the homeland ‑‑ Department of Homeland Security, I believe.  Yeah, basically they’ve restricted the kinds of immigrants they want.  Right?  And one of the aspects of the homeland charge rule is they were not going to allow immigrants with significant disabilities who may need to utilize safety net programs.  

So, you know, that is straight up xenophobic, racist, and ableist.  So, you know, so many of these things have just ‑‑ are all connected.  But yes, I think there’s a lot of anti‑Asian violence and harassment.  But this is also so, you know, parallel and connected with anti‑Muslim, anti‑Arab, anti‑Black, anti‑indigenous.  It’s all part of this larger tsunami of hate.  

W. Kamau Bell:  Tsunami of hate is a perfect way to describe it, unfortunately true.  I want to let people know again.  If you have questions you can tweet them to us by tweeting CityArtsSF at the @ sign.  Or with the hashtag DisabilityVisibility #DisabilityVisibility.  Please sends your questions and we will get to as many as we have time for.  

I want to sort of step back a little bit.  We talked about some things before we got on.  

And it’s interesting, there’s been I’d say it’s maybe it’s called the Scarlett Johansson phenomenon of Scarlett Johansson.  I think it’s happened more than once.  Being cast to play roles that are completely not her.  And some people push back.  One was a trans man I believe.  One was in Ghost in the Shell clearly an Asian character, Japanese character.  

And there’s sort of the idea of one, an actor should be able to play whatever they want to play.  Two, well also these people who are these people don’t get enough roles so we should let them at least audition for them first and really see if we can find somebody to play these roles.  

You don’t hear as much about this with able‑bodied actors playing disabled characters.  What are your thoughts on that?  

Alice Wong:  Yes.  This is a very evergreen and hot topic about disabled people.  Because, you know, every time there’s a movie, you know, for example, the one with Bryan Cranston. 

W. Kamau Bell:  And Kevin Hart.  

Alice Wong:  What is it called again?  

W. Kamau Bell:  It came out at the same time that Kevin Hart was fired from the Oscars by saying anti‑LGBTQ tweets.  I don’t think he remembers the name of the film.  

Alice Wong:  This is a film based on ‑‑ disabled people have thoughts.  They were on Twitter.  They were critiquing this.  

And so many people pushed back saying well you are stifling creativity.  How dare you?  

And the fact that, again, this is a matter of gate keeping.  And historic, you know, discrimination and systemic inequality.  

So how else can you push for these things to open up?  You have to do it by pointing this out.  And just saying we need at least a chance to get through the door.  We need more people who are not white cis men running Hollywood.  Right?  This is part of the work.  It’s still unbelievable how low the bar is just having conversations about this.  Because there are talented people.  There are so many talented disabled people of color just trying so hard being really pushed out of the industry due to the racism, due to ableism, due to just really excuses.  Oh, these sets are built this way.  It can’t be accessible.  

Well, we’ve seen what can happen when you face a pandemic and people are forced to change.  Suddenly museums and all kinds of cultural events are accessible.  Suddenly there’s streaming of performances.  There are ways.  I think this is a failure of imagination.  It’s a failure of political will.  It’s a failure of leadership.  Right?  In every single industry, especially the entertainment industry.  

I think that’s part of the thing I’ve seen where a lot of people are just not waiting around.  They are trying to do their own thing.  I think that’s really exciting, but also I think it’s still important to push, poke people and just ‑‑ it’s still important to make sure that other big industries are ultimately accountable.  And I’m here for the reckoning.  Can I just also, because you mentioned Kevin Hart ‑‑ Kamau, did you know that this Saturday I’m going to poke Kevin Hart on blast.  I’m here to do that.  I’m here.  I’m going to take my shot.  

Did you know that Kevin Hart is hosting a telethon for a cure for muscular dystrophy this Saturday?  

W. Kamau Bell:  Oh.  

Alice Wong:  The MDA, Muscular Dystrophy Association, they’ve had a telethon for decades with Jerry Lewis. 

W. Kamau Bell:  He’s taking over for Jerry Lewis.  

Alice Wong:  Actually, a few years ago, they announced they were no longer doing the telethon.  But this past summer Kevin Hart, he’s reviving and being part of this charity.  And, again, disabled people are like, this is a bit retrograde.  Telethons are not ‑‑ they are harmful.  Again, this is a celebrity who thinks, you know, I don’t know what his motivations are.  You know, if you talk to disabled people, especially people who are former poster children, there’s a lot of trauma and harm.  For a lot of people, telethons were their first, you know, real televised event featuring disabled people that most people saw for decades.  If you think about it, the narratives are all about pity.  It’s about we need to fix these kids.  And these kids are just so sad.  The parents, oh these parents.  These poor parents.  And if you donate, you know, again this is about capitalism and about money.  We’ll fund research because one day there will be a cure so no one will have to go through what little Alice had to go through.  And, you know, there’s a hashtag I recommend for people that was formed by people with muscular dystrophy called #EndtheTelethon.  Check it out.  It’s already tweeting with it sharing their stories about why, you know, people complain about cancel culture, but telethons definitely should be cancelled.  

I have no problem saying they should be cancelled because they are antiquated.  It’s absolutely exploitative.  And I don’t think this charity model does anything to advance disability rights or justice or culture.  

So this Saturday for anybody follows me on Twitter, I will be tweeting along with lots of other disabled people to end the telethon.  If he doesn’t listen to us, our tweets will still be out there forever and ever.  Thanks bird app.  

W. Kamau Bell:  Thanks bird app.  I think it’s really important.  The idea, like you said, your tweets will be up there forever which is important because what this book Disability Visibility is doing, what you do in all your work is you should hear from us, too.  If you are going to hear these other narratives or these other myths, you should at least hear from us, too.  I’m having a moment in realtime where I did not understand why telethons were bad until this moment that we’re talking right now.  So this ‑‑ every time we interact, something like this happens.  So I’m very ready for it.  I thought you might take an hour off during this conversation to awaken me, but you didn’t do that.  I never understood the telethons as being a hurtful thing because of how they frame people with disabilities.  So thank you for that.  

Alice Wong:  Well Kamau, to get very dirty because ‑‑ the sleeper has awakened.  Wake up people.  Wake up.  

Go ahead.  

W. Kamau Bell:  You have had this effect on me whenever I’m watching a movie or TV and an actor comes on playing a disability and I go on that phone and Google that person to figure out if they have that disability.  You have awakened me like that.  Why didn’t this role go to someone else?  Thank you for that.  

Alice Wong:  I do think that is part of the wonderful movement and changes that actors of color, trans actors.  This is really part of progress and that disabled people are part of this.  

And, you know, we want to really share, show solidarity we’re going to also talk about disabled actors, too.  Like these are definitely getting better.  There are more stories or shows or movies, but it’s nowhere close to parity.  

So there’s a lot of more work to be done.  I do hope there’s going to be more kind of cross‑community solidarity and support for one another as we break through these gates and whatever metaphor you want to use.  

W. Kamau Bell:  So we have some audience questions we can go through.  

In talking about your activism, someone wants to know, when did you start your activism/become a public voice for disabled rights?  

Alice Wong:  Well, many, many, many moons ago.  She was born disabled in a non‑disabled world.  I would say that I didn’t have a choice to be an activist.  I did have to start with speaking for myself.  You know, advocating for myself, which is what I did for a long time.  But it wasn’t until I think when I was in high school, a little bit college where then I realized that I’m part of a larger community.  

And it’s strange because I was really kind of isolated for a bit.  Again, this is why representation is so important and why we need to think about what histories are told, whose histories are told because clearly disability history is not part of high school or grade school or middle school curriculum.  

So, you know, I never knew that.  I never had these frames of reference.  

So I honestly became politicized as a young adult.  I started venturing out and getting involved in activism.  It took me a long time because I really was somebody who I thought was going to be academic.  I thought I’m going to be a scholar.  That’s the way I will contribute by doing research about disability.  But, you know, I got caught up in things.  And the rage.  The rage.  It took me a long time to think of myself as an activist.  Again, I think we have very narrow notions of what an activist looks like.  The fact that for most of my activism has taken place in online spaces.  And there’s still a lot of people who just recognize that as work.  They don’t see that as community or grassroots organizing that’s, you know, they don’t see it as the same thing.  

It took me a long time to kind of work up to this identity.  But yeah.  So it’s a very long evolution.  I’m more comfortable now.  It took me a long time.  I didn’t think I was activisty enough.  You know?  And I think that’s ‑‑ that everybody has capacity to be an activist.  You just do it in your own way.  

You do it whatever works for you.  There should be no dogma about how you do it.  That’s what kind of is my other annoyance.  

W. Kamau Bell:  I like what you said that everybody has the ability to be an activist.  I think in this time right now especially post COVID, post murder of George Floyd and Breonna Taylor and Rayshard Brooks and others.  Within days of the election I think we can say now we all have to figure out things we can all do to get this country back.  Well, get this country on a good track.  I won’t say back to anything.  Get this country on the right track.  

Alice Wong:  I think I just wrote an essay recently that’s going to be published this week or next.  You know, it’s about kind of this moment about the election, but also about my very kind of ambivalent feelings about voting because I am definitely voting, but I also recognize so many people cannot vote.  Right?  And I don’t think voting is the only way to make your voice heard.  And I do think that there’s a lot of messages out there that prioritize this voting as the thing you have to do.  And if you don’t do it, somehow, you know, you are apathetic.  

And it’s really important to think about how do we make sure that there’s all kind of ways to be involved because there’s still a lot of people that just do not have that right and we think oh everybody has that right, but that’s not true at all.  

W. Kamau Bell:  Uh‑huh.  Are there ways that able‑bodied people do to make voting more accessible in this coming election?  

Alice Wong:  I think it’s really tough right now because if it’s allowed in your state I think dropping off an absentee ballot for a neighbor or friend that cannot get to a drop box place.  Getting people rides.  Those are all part of things, but I also think that it’s so tough right now because there are states actively suppressing the vote.  I mean it just boggles my mind, Kamau, the fact that Georgia, Texas, other states they are eliminating, reducing polling places.  They are limiting one drop box per county.  

W. Kamau Bell:  Yeah.  

Alice Wong:  What?  And Orange County, southern California, there are Republicans setting up artificial boxes that are not official.  They are just I think are very shady.  So there are a lot of attempts to suppress the vote.  There also is a real decrease in accessibility.  You know, we should not be praising voters who are voting early who have to wait in line six hours.  This is not the way the system should work.  Voting should absolutely be easy peasy and always have an option.  

So it’s really I think early turnout is wonderful, but it also makes me really sad to think that people are so scared, validly that their vote won’t count that they’re willing to risk their lives.  

I have a disabled friend in Texas, who, because of these new draconian rules, she’s high risk just like me.  She says she’s going to have to go out with her attendant and vote in person.  And this is just ‑‑ this is just wrong the fact that people are going to have to risk getting infected to vote.  And voting should be safe.  Voting should be private.  Voting should be independent.  People should be able to do it independently without any assistance or with assistance that, you know, that’s required.  Nobody should be forced to vote in a way that takes away their privacy.  That to me, this is where we still, you know, have such a long way to go.  

W. Kamau Bell:  I think what you said was really important and something that hits me when I hear you talk about this is also don’t shame people who feel like they can’t get there for various reasons.  Especially when you are talking about people with disabilities.  There’s sort of this narrative of like if you need to wait in line ten hours, you need to wait in line ten hours.  If you need to pack a lunch and a dinner, do that.  Not everybody has the ability to do that.  

Alice Wong:  No.  And there are people who may not vote for all kinds of reasons.  But that doesn’t mean they don’t make a difference in different ways.  Right?  And I just really don’t like the shaming.  And I really don’t like this over emphasis on voting even though, yes, you know, there’s so much at stake.  And yes, there’s a good exercise to vote.  We absolutely should.  We can do this and still critique the system, especially the electoral system.  It doesn’t mean that we’re endorsing it.  Right?  That I have lots of problems with, you know, the way elections are run, but that doesn’t mean I’m not going to participate in it.  

W. Kamau Bell:  Now I always think about Boots Riley.  I did an event with him years ago.  He said people try to convince you that voting is the most you can do.  He said voting is actually the least you can do.  We should be finding ways to be activists every day.  We can’t wait every four years to voice our opinion.  We have to voice our opinion every day as much as we have the ability to, and then they’re going to note your opinion every time there’s an election.  But we should be voicing our opinion all the time.  

Alice Wong:  Yeah, and part of it I think is just being informed and having conversations with people and just learning.  I think that’s, you know, part of the work that’s we all should do every day.  Just remain receptive to ideas, uncomfortable ideas that are new to us.  And then just try to keep an open mind.  And I think that’s part of the work.  

W. Kamau Bell:  Just to be clear Boots Riley that’s B‑O‑O‑T‑S R‑I‑L‑E‑Y and he’s a rapper, activist and director.  

So we talked about this on United Shades.  It’s a very common question.  But I want to give you an opportunity to talk about this here.  How do you feel about the term disabled?  

Alice Wong:  Oh, well, I love it.  I love it.  There’s a lot of baggage and, you know, there’s a lot of people that do have disabilities that will never use the word.  Again, it’s not about shaming or enforcing anything, you know.  This is something I crave for myself and myself alone.  

And there’s all kinds of ways to be yourself and be your true self.  So, you know, disabled.  I’m Asian American.  I’m a woman.  A night owl.  You know.  I have lots of things and I think that’s, you know, again this identity politics is not a PC thing.  It’s really a part of something that we should think about that we should embrace because I think sometimes identity is part of the process of how you present yourself to the world.  You know representing communities you are a part of.  And also just, you know, being who you really are.  Who you want to be.  And I think it’s when creating language or identities out there for the most part suppressed because of the conditions we’re living in.  It delights me when there are people that, we’re evolving.  Identity is evolving.  There’s so many different communities within the disability community that are constantly kind of updating their language, how they talk about themselves, and that’s a collective act.  That’s how culture advances and I’m all here for it.  

W. Kamau Bell:  To truly be progressive, and I’ve learned this through my time, to truly be progressive you have to be excited about regularly updating your language and behavior and you have to be excited about making real apologies to fix the harm you’ve caused.  Otherwise I don’t think you’re actually being truly progressive.  

Alice Wong:  Yeah.  Let’s face it, so called progressives that are super racist and ableist.  And you know, we’re going to get political again if that’s okay.  You know, there are, I think we’ve talked about this on United Shades.  There’s so many ways to push back against the person occupying the White House that doesn’t require fat jokes, that doesn’t require ableist jokes.  All these conversations about the way he presents, the way he moves.  Say for other candidates as well, there’s been a lot of attacks on him based on his stutter or his age.  And I think there’s just like we can be more constructive and creative on how we want to, you know, respond and critique people.  Let’s not punch down.  There’s so many more ‑‑ there’s so many really sensitive ways to really call him into account.  

W. Kamau Bell:  Well Alice, as we knew, the hour would fly by as we said at the beginning of this.  We’ve already gone over the hour.  If there’s any question I didn’t ask you or any final words you’d like to leave us with.  I’d love to give you the opportunity to say what you need to say.  You said this before we got on.  City Arts and Lectures is not something we thought we would do automatically.  I felt the same way.  I never pictured myself to be a City Arts and Lectures person.  I’ve been privileged to do it several times.  You will be back, I’m sure of that.  I want to give you the opportunity to say anything you need to say as we close this out.  

Alice Wong:  Yeah.  I’ll say that, you know, thank you to City Arts and Lectures for having me on, but also the fact that I really do hope that after the pandemic that we don’t return to normal.  And cultural institutions and all these other groups, everything that you’ve learned to adjust to this new reality, that you carry it forward, for example, you know, remote work.  Different ways you connect with people.  

I think it’s ‑‑ it will only broaden your reach and it will also bring you people that you weren’t able to have in person.  

Just as speaking for myself.  You know, this was almost the perfect time for me to have a book tour because just to let everyone know, I don’t travel.  I don’t fly.  And I totally thought I would be at a disadvantage, you know, before the pandemic.  I was thinking ahead and just worrying about all the kind of work I’d have to do, the emotional labor of asking groups to like venues, hey, can we do this online?  And I do hope they’ve learned to pivot that they will continue this.  That’s my hope.  

W. Kamau Bell:  Thank you so much, Alice.  I will be in solidarity with you on the more virtual events because that helps me as an able‑bodied person not have to travel, too.  

Alice Wong:  Yeah.  

W. Kamau Bell:  I appreciate you saying that.  Once again, what makes the world more accessible to you makes it easier for me.  Thank you.  I encourage everyone to buy Disability Visibility.  I’m holding the book up.  My friend, my mentor, my Jedi, my coat puller, and my rage partner.  So thank you for attending City Arts and Lectures tonight.  Thank you to the ASL interpreters and the captioner.  And I will ‑‑ we will see you next time.  

Alice Wong:  Thanks, everyone.