Air Date: 11/23/20

The Upgrade by Lifehacker

How to Be a Better Ally, With Disability Advocate Alice Wong
Alice ​Hello and welcome to The Upgrade, the podcast for the team at Lifehacker, where
we help you improve your life one week at a time. I'm Alice Bradley, editor in chief of
Lifehacker.

Jordan ​And I'm Jordan Calhoun, Linebacker's deputy editor.

Alice ​Today, we're learning about disability rights and how to navigate different abilities
and disabilities with help from our guest, Alice Wong.

Alice Wong ​That's one of the things that I think, you know, is so awesome about disabled
people is this recognition that we're interdependent.

Jordan ​Alice is a disabled activist, consultant and founder and director of the Disability
Visibility Project, a community partnership with StoryCorps and an online community
dedicated to amplifying disability, media and culture in 2020.

Alice ​Alice was named by Time magazine as one of 16 people fighting for equality in
America and this year published her book, Disability Visibility: First-Person Stories from
the 21st Century.

Jordan ​So I met Alice for the first time years ago on Twitter, and it was she was my foray
into thinking a lot more critically about disability rights and the ADA. And it really exposed
me to this whole world of people on Twitter that talk about this as an important issue. And
one of those issues that me, as an able-bodied person, just fails to consider so often. So it
was really interesting. I also recently interviewed her for How I Work, where we got to talk
about her experience working from home has been just this long-standing one. And
obviously so many people now are working from home and are just thinking about a lot of
these things for the first time. And for Alice when she was explaining to me was that, you
know, for her it's like, duh, we've been saying this for a long time. These types of
considerations are important to make, but people just don't listen as much. And now it's
affecting everyone. And we all have so much to learn from people who've been living that
experience for a long time. So it's been really interesting. I can't wait to get into this
interview and to hear more about her perspective. She's one of my favorite people.

Alice ​She's amazing. And I totally agree that you find these voices on Twitter that really
change your perspective on things. And first of all, like let's just talk about how, you know,
Twitter gets a bad rap for being a cesspool. But there actually is like there are these
amazing communities that you can tap into and and find a whole new perspective on
things you had never before considered. And not just and something you don't get from
reading an essay or a service article because it's day to day living that you're really seeing
through the lens of somebody who's dealing with things in a different way. And I think
that's super valuable.

Jordan ​Exactly. That's the silver lining for me of Twitter. And I completely agree.
There's—it's very easy to doom scroll through Twitter to get lost in a lot of the negativity.
But one of the things that I personally get from Twitter is just this slice of another person's
life and the types of things that they talk about and the types of perspectives that they
have when certain things are going on and you end up getting a small glimpse of an
insight into certain things that you otherwise probably wouldn't have gotten.

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Alice ​Right. Right. One of the things that we're going to talk about is the sort of like, as you
mentioned, the virtual workspace and how it's opened up possibilities for the disabled. And
something that I think a lot of people are thinking about now is there's a light at the end of
a tunnel. There's a possible return to normal. But to some people, they'll return to normal
may not be a good thing because it means, once again, their rights are secondary to the
rights of people who are able-bodied, who can go to an office and get on trains and
commute easily. And it's really going to be interesting to see how things shift. And I'm kind
of hoping in some ways that we see some real permanent changes to that structure.

Jordan ​Absolutely. If there's a good thing to come of this, you know, that that type of
change would be really, really great to see. So I'm excited to talk with Alice and hear what
she has to say about it.

Alice ​Let's do it.

Alice ​Alice, welcome to The Upgrade.

Alice Wong ​Thank you so much for having me.

Alice ​So tell us a little bit about your work with the Disability Visibility Project.

Alice Wong ​There's a lot. It's an online community dedicated to creating sharing and
amplifying disability media culture. And I started it in 2014, and initially it was just a
one-year oral history campaign. And it really snowballed.

Alice ​I would just love to hear a little bit about your own story and your disability and were
you born with it? And just, you know what you've been going through.

Alice Wong ​So I was born and raised in Indianapolis, Indiana. I'm the daughter of Chinese
immigrants who of all places moved to Indiana from Hong Kong in the 70s. And I was born
with a disability that's progressive. So that means that when I was young I could walk. And
then a little bit later as I got older, around 6 or 7, I had more difficulty walking. And then I
started using a wheelchair. And I pretty much needed more supports throughout my life.
So, you know, for people who are listening, I sound different because I am wearing a mask
over my nose that is attached to a ventilator. And that's because I'm at a part of my life
where I need more support to breathe. So that's kind of my lived reality as an adult. And I
think that's just one of the things that's, you know, maybe, pretty unique in a way. And I
think a lot of disabled people, and who are sick. as well, a lot of sick and disabled people
have a lot of that kind of experience in terms of a lot of uncertainty, but also just very able
to adapt over time. And these are real skills, like these are skills that I think are invisible.
It's never really recognized by non-disabled people.

Jordan ​Can you talk about some of the ways that able-bodied people overlook the needs
of disabled people?

Alice Wong ​Yeah, I think like so much of our society, you know, everything is shaped by,
you know, systemic racism and white supremacy and ableism is part of that. You know, I
think just the way, for example, the way we organize work, the way our communities are
organized. The way, you know, towns and cities, public transit, there's so many things that
are structurally, you know, exclusive and inaccessible. I think there's a lot of programs and
policies that are just as discriminatory and ableist. You know, for example, there are

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people who are disabled and for example, you know, our own social security benefits, they
face some marriage equality issue. You know, if they marry another disabled person with
benefits, their benefits actually go down. So there's a huge disincentive and penalty that
prevents people from being with the person they love. And these are just, you know, one
of many examples of how, you know, structurally and just, you know, socially, disabled
people have been kind of invisible and just left out. And this has been, you know, part of a
very long history as well.

Alice ​I just think about I know people have said, you know, just think about where you,
where you live and where you work and could you get to your office and could you live
where you live if you had a disability or movement disability? And almost always the
answer is is no.

Alice Wong ​Yeah I mean housing is a huge disability issue. When we think about
affordable housing, we don't think about affordable and accessible housing. You know, a
majority of homes are out of reach of like everyday disabled people. And you add on
gentrification, you add on all these different things. You know, I think one of the things
that's the biggest non-disabled privilege that I see all the time that I wish I had, was the
ability to be spontaneous. You know most of my life, I have to kind of really be deliberate
and intentional. l do a lot of legwork just to be sure that I can do what I want to do. And
[00:09:32]​I think you know a lot of people just don't realize, "oh, like, I can move to another
city if I, you know, have the means." While a lot of people with disabilities can't just pick up
and leave or just decide to go to a bar like tonight. You know, just, it's not that easy. It's a
little complicated. But I think you know, non-disabled people can do so much to make the
world a little bit more welcoming and a little more accessible by just understanding their
own privilege, acknowledging it and also understanding that we all have a collective
responsibility. ​[43.0s] ​You know we can create access for each other. And that's one of the
things that I think is so awesome about disabled people that I love about my community, is
this recognition that we're interdependent. You know that it is not a bad thing to say you
need help. Because we can also give help too. You know, in just big and small ways and I
feel like, you know, it took a pandemic for a lot of non-disabled people to realize, "whoa,
like this is like, you know, this kind of living is really different." And that it's frustrating when
they don't get what they want immediately. And I feel like a lot of chronically ill people or
just people who are completely you know, their entire life is centered either in their bed or
on their couch. They're like welcome to our world. This is like you now have a slight inkling
of the struggles or challenges because, you know, one thing that gets me reawlly salty, is
that, you know, disabled people have been fighting for remote working options for offices
to have people to, you know, to...You know things like that. And suddenly when
non-disabled people have something taken away from them. All these things are suddenly
not so difficult. They're not an issue any more. I think that to me is pretty enraging because
so much of the work that we've done has really been erased. It hasn't been acknowledged.
And I really hope, you know, as we come out of this together that we don't go back to
normal. But I want workplaces and organizations and institutions to keep doing what
they're doing as they adjust to the pandemic. But just keep it. Keep it. Because it'll only
enhance their outreach, their inclusion. For example, you know, I came out with a book
this summer and I thought I was going to be at a huge disadvantage because I don't travel.
I don't fly. I thought, oh, gee, I just going to end up doing these social events and I might
have to be ready to really make the argument to bookstores and just different
organizations that are outside of the service system to say, "hey, can we do this online?"
And I've just been really lucky but also, you know, I just find it very interesting how these
have suddenly become, much open and available to me in ways that I don't think has ever
happened before. And I think it says a lot, right that it takes the suffering of billions of

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people. Basically the lack of leadership and inaction for people to kind of wake up and
realize gosh, you know, people are struggling. People are finding creative ways to do that
and find community. And I think this is something that I hope everyone kind of takes to
heart and just bring it forward even when things get better. Because unfortunately, I think
this won't be the last pandemic that we're going to come across.

Jordan ​Yeah. I want to ask about the Americans with Disabilities Act, because personally,
when–I hadn't thought about it a ton prior and when you don't think of a policy or if you're
thinking of it sort of in the sense of, you know, the ADA exists and you don't think about it
critically, the assumption would be that it solves most of the challenges that disabled
people might face. You just sort of take it for granted. But obviously, if you give it deeper
thought or you speak with people who it affects, you realize that there might be certain,
you know, accomplishments that it did make. But then also some great shortcomings. Can
you talk about the the good of the ADA and where it falls short?

Alice Wong ​Yeah, thank you for asking. You know, it was this past July, that was the 30th
anniversary of the Americans with Disabilities Act and it's been around for a few decades,
and I think it was really important. It was, you know, a huge achievement because, you
know, it prioritized us as a protected class and that. wehad a right to public
accommodations. You know, some, you know, accessibility in public, you know, public
buildings and, you know, other kind of businesses. But there really isn't, like all laws, you
know, there are flaws, there are loopholes. There's no enforcement element to those laws.
So, you know, there's no ADA police, there's no regulatory body for, you know, people with
disabilities when they encounter barriers at a workplace. Maybe at a cafe, or just any sort
of place upon which, you know, they have to go through a pretty onerous process to get
things started. And sometimes it just starts with, you know, talking to the manager. And
sometimes that can be what it takes. But other times you have to file a complaint and then,
you know often times the only real recourse is through a lawsuit. And this is what has been
one of the biggest misunderstandings, especially about non-disabled people. You know,
there's a lot of misinformation about all these frivolous ADA lawsuits. And people say, "oh,
you know, these are people just pulling a fast one. These are just shady lawyers who are
trying to make a quick buck." But you know, for the most part, people with disabilities, like
anyone else, they don't want to spend their time doing this unless it was really important.
And a lot of the media, you know, coverage has really kind of painted disabled people as
moochers, complainers, people asking for something special, when all we're asking for is
compliance. But then this whole kind of misinformation or stereotyping, you know, where in
the last few years our congress that is trying insistently to repeal the ADA. They're trying to
pass bills that would amend it and make it weaker. So a lot of non-disabled people I have
a feeling have no idea that was happening. And one way to be an ally is to follow disability
rights activists about things that are happening either in Congress or locally and just, you
know, find ways to support these efforts.

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editor of The Glow Up. And this September, we're excited to bring you The Root Presents:
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voices in Black literature about their work, the books that influenced them, and a lot more.
So please join us every Friday for some thought-provoking conversations. You can find us
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Alice ​Besides you, who are some disability rights activists and organizations people
should be looking into and following?

Alice Wong ​Oh, there's a bunch. You know there's one that I just really admire on social
policy issues. And that's the Autistic Self Advocacy Network. You know, they're based in
Washington, D.C. and, you know, they are really on the cutting edge. Like they're always
just getting involved in a lot of policy issues and issue these really important kind of
material and content about things that are coming up. So that's one group. Another group
that's a national organization is AAPD the Association of People with Disabilities. So those
are just two. But there's a bunch that I share about in my podcast. And I would also
suggest that for people who are on social media to like, you know think about who are you
following. And just who are. youkind of missing out on? You know think about like the way
your book shelf looks. Like who's name is on your book shelf? Just like who's missing in
your follower list? Because, you know I personally follow a lot of disabled people, and I
am just always learning. I am constantly learning new things. And, you know, that's a great
way to kind of have an entry point, just to hear people's perspectives and, you know,
things that are framed in a different way.

Alice ​Yeah, I find Twitter to be so valuable for that, right, just sort of that it's the small daily
injustices and observations people make when they're coming from a totally different place
than you. That is so is so invaluable. Who are some of your favorite Twitter followers?
Follows, rather?

Alice Wong ​I would say that Vilissa K Thompson. So Vilissa is on Twitter. Their handle is
Vilissa Thompsont V-I-L-I-S-S-A Thompson. And the other person is Andraea LaVant. And
Andraea is actually.. are you two familiar with the film Crip Camp? It's a documentary, that,
you know, on Netflix.

Jordan ​I'm not. Tell me about it.

Alice ​It's supposed to be great, but I haven't seen it.

Alice Wong ​Oh my gosh. Okay. Let me tell you all.

Jordan ​I mean, half of my relationship with Alice Wong is explaining to me things that I
should be watching. That was how we first interacted, was she convinced me to watch
Attack the Block and I owe her my life for it. So tell me. Tell me more. Tell me more, Alice.

Alice Wong ​Okay, so this is perfect for this podcast, because I think for anybody who's
like, completely has never, has very little familiarity with [disability] and disability culture,
there is a new documentary on Netflix about disability that came out in late March of this
year. And it's co-directed by Nicole Newham and Jim Lebrecht. And Jim Lebrecht is a
disabled activist and sound producer. And this is all about a group of campers in the
seventies of all disabled people. And this documentary is all about how this group of
teenagers really found strength in one another and all of the things they did later on
growing up and their involvement community organizing, and the way they built a
movement. So it has this very kind of micro kind of like social cultural aspect of just
teenagers being super horny, and super silly, and just having fun, but also, you know,

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shows this beautiful kind of progression of disability rights and they actually kind of end
with this starting of the ADA in 1990. So I highly recommend for people who are just sort of
really new to this, to check out Crip Camp. And that's spelled C, R, I, P, C, A, M, P. It's on
Netflix. And my friend actually Andraea LaVant is the producer of their impact campaign.
So she is a credible person and her Twitter handle is A-N-D-R-A-E-A L-A-V-A-N-T. So I
would definitely just urge people to start with following Vilissa, Andraea, and maybe me if
they want.

Alice ​Nice.

Jordan ​I really enjoy the sort of sprawling web that Twitter becomes like once you step
foot in one part of a community, it's really easy for that to continue and you to find other
people who they re-tweet and other people who you want to follow in that community.
That's how I ended up. I mean, that's how I ended up finding Alice and finding a lot of
people who would sort of make me think about these things a lot more critically and a lot
more in-depth than I ever had prior. Which makes me want to ask, so, what are some
small, actionable things that people who, like I was who didn't really consider disability that
often? What are some small, actionable things that they could do to be more supportive
and a better ally to people, whether they, you know, have a close friend? I imagine if you
have a close friend who has a disability, you've thought about this before. But there are
times where you're going to meet people later on and you need to be able to think about
these things in a way that you might not have prior. What are some things that people
should consider or do?

Alice Wong ​Yeah, I would say this would apply for people who have friends and family
who are disabled, because sometimes it is so hard to get understanding, unfortunately,
sometimes. You know, if you're just meeting somebody for the first time. I mean, here's
some like very simple basics for, say, you know, number one: ​[00:26:19]​believe disabled
people when they tell you something is problematic. You know when they say like, "Hey,
this is not very cool what your friend said, or, "Oh I love this video that you put up, but did
you notice that you don't have captions?" Or like, you know, "I see you posting a lot of
great photos, have you thought about adding alt text?" You know these are little things
people can do every day to incorporate just a little bit of access that really says a lot
because if you let's say post content, for example, especially, you know, major publications
or organizations. You know, if you don't caption it. If you don't, you know, supply image
description, you're saying you don't care about a huge segment of the population. And
disabled people have said this for a long time that access not only helps disabled people,
but it benefits everyone, ​[71.1s] ​you know, and I think in big and small ways we could be
more open-minded and flexible with people do say that you were used to doing something
one way, but maybe your friend with a disability says, "Oh by the way, mornings are not
the best for me. Can we do this at night?" That's one way you can be more accessible. If
people are inclusive and say, "OK, you know, I wasn't planning on doing that but sure why
not?" So I think believing disabled people when they tell you something, take them
seriously, but also be open-minded right? Like just think about new ways to do things and
be open to being creative because disabled people have been living in a non-disabled
world forever. And part of who we are in my opinion, I'm only speaking for myself, is a lot
of the innovation and creativity we have often not by choice. By just because of this world
that we live in and to me that's what I love about disabled people is that we have such
different perspectives, and just different ways of being. And I think so many people can
learn from that. If you're a non-disabled person and you want to be a good ally with
disabled people, you know I would love for people to say, like, if your workplace has
something about diversity inclusion and you don't see disability, you should say, "uh

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excuse me something's missing here." And, you know, I do think of an ally as somebody
who really knows when to get out of the way. And really knows how to support people
behind the scenes and to provide access, material aid or other expertise. But really for the
people who are you know, you're trying to be an ally with be front and center. Because, I
think we all know that there's a lot of allyship out there that's very performative. It's very
transactional. And I think with disability, I see a lot of kind of saviorism, and. it just makes
me roll my eyes because, allies need to ask themselves, what is their motivation? I think
that's really important for any ally. A really good question to ask is, are you calling yourself
an ally or are you waiting for the community to identify you that way? Because I think
there's a difference, you know when people try. toself-identify and try to be an ally, you
know, you better show up and you better have actions to back up that label, versus do
other people identify you that way. I think that's a real recognition of how you center
yourself or not center yourself.

Jordan ​Whenever I get to talk to you, Alice, it's my, the highlight of my day, I always enjoy
spending time with you.

Alice ​So great to talk to you.

Alice Wong ​Well thank you for inviting me, I'm just delighted to be part of this.

Jordan ​And now it's time for Upgrade a Week where we talk about that one tiny thing
that's making a big difference in our lives. Alice, what's your grade this week?

Alice ​So my upgrade is one that I'm anticipating being an upgrade, which is my
Thanksgiving dinner. We are keeping it very small this year. It's going to be just me and
my husband and my son and I have only done Thanksgiving a handful of times. And it's
always been like a huge affair with lots of like, you know, people bringing dishes. And just
the turkey alone stresses me out because I don't know, just cooking like the whole...Things
with bones. It's like a whole new world of concern. You know, things aren't going to cook
all the way through. And I don't know, they're going to be overcooked. I just I'm still not I
feel like I'm not fully an adult that way. So anyway, I have found a menu for Thanksgiving
in The New York Times from Melissa Clarke, who has been a guest on The Upgrade
before, who is delightful. And it's a menu for to which I plan to extend to, well, two plus a
teenager. So it's really going to I'm gonna have to double it.

Jordan ​So 16. Yeah.

Alice ​He's got exactly. There's a big appetite going on there, but it looks amazing. And I'm
especially excited about the pumpkin sticky toffee puddings, which I'm, just sounds like it's
going to give me cavities. But I'm a big fan of toffee and pudding and pumpkin and it
sounds delicious to me.

Jordan ​Everything you love.

Alice ​But yeah, there's all kinds of good things out here, like maple roasted squash,
sauteed greens. It's only turkey thighs, which I'm not fully on board with. But I might do
something. I might have to alter that a little bit. But.

Jordan ​The beauty of the recipe is you could tweak it.

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Alice ​Exactly. So that's my planned upgrade. I'm going to kind of go off the general the
normal script and experiment a little bit with some new recipes.

Jordan ​Nice. Nice.

Alice ​Yeah, hopefully it'll be nice. I'll let you know. How about you, Jordan?

Jordan ​My upgrade this week is courtesy of an article that I read earlier this week from
The New Yorker that was talking about ambient TV and ambient TV. Basically just gives
credibility to something that I've just started doing pretty recently, which is having a rather
mindless TV show on in the background that doesn't require your full attention. And there's
so much TV now that I, I don't know if anyone else feels this way, but I feel sort of some
type of pressure to keep up with what's trending and what's popular. And certain shows
require your full attention because they're going to be dense. They're going to need your
attention. And if you're going to be able to have a conversation about them, you're actually
going to have to pay attention, you know, if you're watching Watchmen or Lovecraft
country or something like that. But then there's other shows that you can keep up with and
have relevant conversations about that you don't really need to pay attention to every
moment like Great British Bake Off. I keep up with that show pretty religiously, but do I
need to pay attention to every moment? Absolutely not. I can keep up with Great British
Baking Show by just having it on in the background while I'm washing dishes or doing the
types of things that I would do when I'm, you know, listening to a podcast. So it's being
able to have a TV show on that I can keep track of so I can have conversations about
them with my friends. But choosing which ones you can have on in the background when
you're doing other things and you're not really missing anything. So it's like the upgrade is
to separate ambient TV from like you're more serious and prestige TV so that you know
which types of shows you can multitask towards and which type of shows actually require
your attention.

Alice ​There's a very specific kind of show that I enjoy, sort of and I'm sure this is terrible
for you, but I like getting on my phone and playing a mindless game while watching a
mindless show. And it's sort of this like it's like the comfort blanket of nighttime
entertainment.

Jordan ​Yeah. Yeah.

Alice ​Great British Baking Show is a perfect example, like turn that on and they're like, oh,
sweet pudding. And then you're like, yeah, making it bit like putting, you know, dye
restringing diamonds together on a dumb ass chart, you know, things like I'm playing this
game called Grindstone that's just it's fun but fun like killing of monsters, fun looking
monsters. It's so, so mindless.

Jordan ​And I find that when you're watching these types of shows, too, I don't know if it's
because of the music or maybe you just get the cadence of the show. But you know
exactly when you need to pay attention and when to look away. If I'm watching Great
British Bake Off, I know when I need to look and when I can just like have it as background
music to my life.

Alice ​Right, right. You know, and like, OK, they're getting the paddle attachments. All right.
They're going to.

Jordan ​Right. Right.

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Alice ​And make some bread.

Jordan ​Yeah. And there are sitcoms like that too. Where you're like oh that's a funny joke.
OK, I'm going to ignore the plot. Oh OK. They're having a conversation right now. Oh I can
ignore the rest of this. Like you just sort of tune in to the parts where the plot is moving
forward ever so incrementally. But there was never high enough stakes that anything really
matters, even if you were to miss it.

Alice ​Nice. Well, I'm sure that there are tons of doctors and attention experts who would
not approve of this multitasking, but they're not here right now.

Jordan ​So we're the experts here, Alice. We're the experts.

Alice ​That's right. That's right.

Alice ​And that's our show, The Upgrade is produced by Micaela Heck and mixed by Brad
Fisher.

Jordan ​And since this is Thanksgiving week, instead of asking for a review and a rating on
Apple Podcasts or wherever you listen, I want to say thank you. We want to thank
everyone who has done that, who has listened to this show. We love that you guys tune in
and you listen to us and we look forward to this next year where we're going to have a lot
more content for you guys. So thank you for those reviews. Thank you for listening.
Thanks for being a part of The Upgrade.

Alice ​I was going to say that. I was going to say thank you.

Jordan ​Oh, okay. No, no. I mean, you could you could say thank you too. I am thanking
them on behalf of myself and not the both of us because I don't want to speak for you.
That would be rude.

Alice ​As a good person, you'll thank them. No, no, go ahead.

Jordan ​You can also reach us, though, if you want to reach out by calling at three, four,
seven, six, eight seven eight one zero nine and leaving a voicemail. Or you can write to us
an upgrade at Lifehacker dot com, as always.

Alice ​You can also find us on Twitter, at Lifehacker, on Instagram, at Lifehacker dot com,
all one word and on Facebook, at Facebook, dot com slash Lifehacker. Sign up for
Lifehacker's daily newsletter. It's full of tips and tricks and also hacks at Lifehacker dot com
slash newsletter. And you can find show notes for this and every episode of The Upgrade
at Lifehacker dot com slash the show.

Jordan ​Have a great Thanksgiving, Alice.

Alice ​Oh, Jordan, and you as well. Have a blessed...

Jordan ​Be blessed, Alice be blessed.