It seems like every month a new cringe worthy picture of a public official in blackface is shared on social media. The pictures usually surface decades after they were taken but they are born out of a long tradition of blackface and racial mockery in America. But that tradition isn't just a part of our history, it's being replicated online through our use of GIFs.

Anil talks with Dr. Lauren Michele Jackson, author of White Negroes: When Cornrows Were in Vogue… and Other Thoughts on Cultural Appropriation and Kenyatta Cheese, digital enthusiast, co-founder of Everybody at Once, and founder of Know Your Meme, about digital blackface. They discuss how we can examine our online persona's and how algorithmic choices reflect systemic bias.

GIFs as Blackface

Anil Dash: Welcome to Function. I'm Anil Dash. Take a moment and think about the last GIF you used, whether it's on social media or in messaging. Picture it in your mind. For me, it was a GIF of Prince as you might be expecting and the reason why, to be fair, was because I was responding to somebody about politics in Minnesota and that's where he was from.

Anil Dash: But think a little bit bigger about the last few GIFS you used and what you were trying to express when you did that. If you searched for words like yes or no, using the GIF databases that are out there, these are apps like Giphy or Tenor. What you'll get back on the search results are usually a pretty diverse set of images. Cartoons or animals, or at least different kinds of people coming back on those searches. But now, what if you go and you search for stronger emotions, things like the word happy or sad?

Anil Dash: I bet you'll notice that you start to see more black faces. Now keep searching for even more evocative reactions or emotions like shade or sassy. I bet you'll find you almost exclusively get back images of black women. Like right now I'm going to search for the word confused and I get back a an image of Chris Rock and if I search for angry I get Rihanna and she doesn't seem like an angry person to me. But if I searched for something a little more neutral, a little more relaxed, like thank you, that phrase, I get Lady Gaga. And you'll get different results when you do this kind of search because these patterns and results change all the time. But notice the overall trend, when it comes to expressing our more complicated, stronger reactions online, we often end up seeing and using images of black people. And our use of GIFs isn't just limited to searching in these database apps.

Anil Dash: Think about the most popular viral GIFs that are used online, whether by people or by brands. So many of them feature an image of a black person who is having a very strong emotional reaction to something. And oftentimes that reaction is exaggerated just by nature of the fact that it's been taken out of context and clipped into a GIF. And don't get me wrong, I love GIFs. I love using them. I think they're an amazing tool and a great way to express our emotions in a digital world that oftentimes lacks nuance and feeling. But as we know by now, a lot of times the real world's racism and its race dynamics often get replicated when we go online. So this time around on Function, we are tackling the concept of digital black face.

Lauren Michele Jackson: I think of digital black blackface most broadly as a form of racial slippage or racial masquerade, you could call it, enabled by digital technology, digital platforms.

Anil Dash: That's Lauren Michelle Jackson, she's a professor and author of the upcoming book, White Negroes, When Cornrows Were in Vogue and Other Thoughts on Cultural Appropriation. Now you know what the title like that this book is going to be hot. Looking forward to talking to her, especially because of this article she wrote a few years ago for Teen Vogue. It went super viral and it was explaining that basic concept of digital black face.

Lauren Michele Jackson: That could mean 4chan who are orchestrating widespread attacks on online black communities, creating fake profiles and these very kind of organized means of "infiltrating discourse online" and really trying to disturb abilities for communities of color to organize. But it can also be something as simple as just trying to borrow the coolness or the cultural cache of something that is actually not really fluent to someone's body and someone's culture outside of the internet.

Anil Dash: We talked about what black face on the internet means in 2019 and how it's related to race and appropriation more broadly. So it's really interesting because there's a spectrum of both an orchestrated campaign to try and simulate or attempt to emulate being black and having a nefarious intent is very, very different than somebody who might not know they're being thoughtless and there still a harm there, but there's a very different purpose to what they're doing. So it seems like there's a pretty broad spectrum of the ways this plays out.

Lauren Michele Jackson: Absolutely. And the term actually originally came from Joshua Lumpkin Green who wrote a Master's thesis in 2006 called Digital Blackface, The Repackaging of the Black Masculine Image. And he in his thesis was looking at Grand Theft Auto, San Andrea and so in his definition of the term or his formulation of the term, he was really thinking about the way in which video games allow this sort of seamless connection between the character on the screen and the controller and the body of the person playing the game and the way in which you can essentially play act as a black person and live out the fantasy of what you would do in this racialized body.

Lauren Michele Jackson: And it was Kate Brown who is an art historian in 2012 that actually applied that term to GIF behavior on Tumblr, which was the platform de jure, when she was doing a lot of her research. And so, you know, what I'm doing with the term is to try to connect all those disparate pieces but then also think about a much wider culture and basically what Tumblr has become, now in the year 2019 where we do have, what the platform itself calls trolls, but you know, are kind of much more than trolls. They're racists and Nazis who are doing really, really nefarious stuff online.

Anil Dash: Our first episode in season one, we talked about the game Fortnite, which obviously is a successor to the GTAs of the world. So a little newer take on that sense of you can play these other characters. But one of the things you can do in the game is you can use an emote, a dance. And we talked to 2 Milly about seeing the Milly Rock be in the game but not credited, not paid.

2 Milly: It's not an official Milly Rock if it ain't come from me. So how could you put that into a game and a brand without contacting the creator?

Anil Dash: How many people playing the game can do the Milly Rock the way that 2 Milly can, right? So there's this little bit of like this is letting me play act as someone else. Is that a facet of that same sort of desire, that same behavior?

Lauren Michele Jackson: Absolutely. I would definitely put that in the same category of a cultural if not racialized masquerade. The very definition of a reaction image or reaction GIF, you're borrowing something from the image or the image is doing something for you, is delegating something that you are, on one hand unable to do because you're a person and there is an online space, unless we were going to, I don't know like record ourselves and have a kind of endless library of our own selves reacting to various news. But no, that's impractical. So of course you delegate that work to an image and oftentimes a kind of exaggerated image of what your feeling at that particular moment. And so there's always that sort of desire or that sort of reaching or the image doing for you, something that you actually cannot do for yourself at the time.

Anil Dash: Is there an aspect of how, especially black artists, because there's so many of the GIFs are of celebrities, right? They're actors or they're reality TV stars or they're singers or whoever they are. Is there an aspect of this that is about an artist sort of being tasked with representing a feeling, emotion, a thought, an idea that that sort of feels analogous to their art being taken or their creativity being exploited?

Lauren Michele Jackson: I do think we're at an interesting point now where you could see how certain television shows like Insecure or reality stars on Drag Race or something like that are cognizant of the, I guess currency of GIF culture online. And so I think that creates a situation where you are in popular culture that is making itself sort of preemptively GIFable. I think you could add even this season of Big Little Lies to that as well. And so on one hand I think in the pop culture sphere, it's kind of expected that you're going to take a snapshot and GIF something and circulate it widely on the web. And I think that's something that a lot of creators want.

Lauren Michele Jackson: But I also think there are moments from maybe an earlier version of the internet, late 2000s, early 2010s version of the internet where it was everyday black people going viral for whatever reason and their image being circulated so widely and not really getting any benefit from that.

Anil Dash: Right. They become memeified but it's not an exchange.

Lauren Michele Jackson: Exactly. And they don't have a show that they get to promote. They don't have a publicity person they can run back and say, "Look at the numbers, look at all these people engaging." This is their life essentially. This is their image.

Anil Dash: In an earlier episode we talked to a T Kyle MacMahon who now works on Watch What Happens Live. And really starting out in fandom on Tumblr, he had created a lot of the first NeNe Leakes GIFs that were like, they're still, I think, staples. When you see people react to stuff online. And he's a gay, white man, which I think is always part of the conversation about how culture shifts, especially from black women to non-black cultures. And it was really interesting because what he expressed was really fandom. He was like, "I thought the show was great. I thought she was great. I wanted this to get out there in the world."

Anil Dash: And you know what he heard back from the people running the show was, "Oh this helped grow our audience because people are like, 'Oh, I know her. I know that person from what I see in social media.'" What do you think about that aspect of there being an element of fandom or this is somebody's they feel their method of expressing support when they're sharing these things?

Lauren Michele Jackson: It feels very like early or mid-Tumblr to me because-

Anil Dash: I mean this was a while ago too.

Lauren Michele Jackson: Because that was the love language of Tumblr like you go on Tumblr to see all the GIFs of Harry Potter, all the GIFs Doctor Who.

Lauren Michele Jackson: Yeah, right? There's the five shows that people on Tumblr care about and you would go there to see all of those and then you would repeat them and recycle them. And then I think it is very different when you get to a place like Twitter where the GIFs are so de-contextualize or rather the context is replaced by whatever the user wants it to be when they employ that GIF. So yeah, like to this day, there's probably many, many people who would recognize NeNe Leakes but have no clue who she is, have no clue what Real Housewives of Atlanta is. They just know the face of that sassy black woman who is snapping her fan or wagging her finger.

Lauren Michele Jackson: I'll actually use a specific example using actually NeNe Leakes. So there's this one episode where NeNe goes to downtown Atlanta to visit another cast member who has been like seeing at a hotel or something like that. And you know, she's in an area that she describes as the "ghetto."

Lauren Jackson: The way she says it is like super funny and can't be exaggerated because she's not in the hood, she's in downtown Atlanta. Right? And so that video turned into a catch phrase like, "Woo child, the ghetto." Right? And it became shortened and abbreviated and you have all these white people now who are typing out, "Woo the ghetto." Since they don't know the rhythms and the patterns of the language. So they're like, "Why are we talking about Chile? What does Chile have to do with it." Right? So [crosstalk 00:12:44] the problem of lack of context and what can happen to a kind of beloved black staple, whether it's coming out of NeNe Leakes' mouth are coming out of my Nana's mouth, or just somebody saying it. And now it has-

Lauren Michele Jackson: Well, there just somebody saying it and now it has turned around back on itself. So now you will hear black millennials saying, "Whew chile."

Anil Dash: One of the biggest breakers of context is brands. Companies. Everybody's trying to be the coolest brand on social media, on Twitter, on Instagram, whatever. A lot of brands are trying to be the most woke brand and a ton of them have used GIFs as part of how they're communicating out in the world. You've got the whatever, your Wendy's mixed tape and you got your Hamburger Helper mixed tape, I guess. I'm sorry, I'm getting my cool internet brands mixed up as to who has hashtags, who has mixed tapes, and who has whatever.

Anil Dash: But to that point, you have this sense of there are companies out there that are, well, very often they've got somebody who's relatively junior in the organization managing social media. Very, very often that person is not black. And very often what they're sharing is a GIF of a black person responding, reacting, emoting about something that the brand is saying. And then interestingly, those are never compensated spokespeople. That's not somebody who's getting paid to represent that brand. How much do you think companies have a culpability in this, in normalizing that kind of use?

Lauren Michele Jackson: Absolutely. You will see brands trying to get on the train of digital culture. I think something that is somewhat funny is that I think we now take for granted that brands are going to be extremely late to the party. I think about the makeup companies now that are, and beauty brands, that are trying to capitalize on Hot Girl Summer without giving Megan her coins. That really is what my book, White Negroes, talks about, thinking about how much we take for granted that brands and celebrities are just going to keep scraping and scraping from the cool black kids, essentially.

Anil Dash: You know, we've talked about a couple of different ways this plays out. One is companies [inaudible 00:15:17] The second part is the technology is giving people almost the default of the here, here's how you should express yourself. If you just give us a word, we'll give this back to you.

Anil Dash: Is there a way for an individual to be responsible given that context? I'm out there on social media and I'm not black. I respect black culture. I want to be thoughtful. Is there a way for me to reflect, and if I want to be intentional, to make sure I'm communicating in a way that's respectful? Or is it just, stay out of this lane?

Lauren Michele Jackson: It's not stay out of this lane, that's for sure. I get this question or some version of this a lot. When I wrote the article on Teen Vogue about digital blackface, outside of the people who I am super grateful for in engaging with it in a curious and thoughtful way, everyone else fell into these two camps. Which is on one hand, the conservative troll-ness that it was reposted on who are like, "This is ridiculous. Pulling the race car. Everything's racist."

Lauren Michele Jackson: Which was expected and almost didn't bother me as much as the quintessential white liberal response, which was, "I'm never using GIFs of black people ever again. Everybody look around, you're being very racist right now." Basically saying all these things that I never said. I never wrote.

Lauren Michele Jackson: That almost bothered me more, because it was like one, you didn't read it, two you actually don't care about improving, the ethics of your behavior. Because if you did, you would do the harder job, which was to be constantly vigilant about how you use an online space versus taking the easy route, which is to just throw your hands up and be like, "Okay, I'm not going to engage. I'm never going to use a black person GIF. So then I'm in the clear and then I'm good."

Lauren Michele Jackson: No. We're all implicated into the racial assumptions that we make and there is no opting out or really easy way around it, I guess. We just all have to be uncomfortable, and triple guessing the things that we do and the behavior we do online. The things that we share and the things that we circulate.

Anil Dash: Lauren, thank you so much. This has been extraordinary conversation. Deeply insightful.

Anil Dash: Okay, I'm hardly an artist, but I'm going to brag a little bit here because I am the first person to have a GIF exhibited in an art museum. I'll take you back to 2006. The internet was young back then, and the World Cup was taking place that year. There were all kinds of memes being shared about soccer, football, whatever you want to call it. And I thought they were pretty interesting. So I wrapped up a bunch of what people had been sharing into this one elaborate GIF. It took me hours of work, but I put it all together and obviously some people thought it was funny or interesting, and it ended up catching the eye of some people in the art world. Next thing I knew it was exhibited at the new museum here in New York City and later ended up being added to their collection.

Anil Dash: The thing is making that GIF back then, it took me hours of work. I did a lot of this manually. But these days it's a lot easier. If we want to use a GIF and a message, we just go to one of these little databases like Giphy or Tenor. There's a lot of different apps out there. Or it can be even simpler. Your phone probably has a button right next to the keyboard that will let you drop a GIF into whatever app you're using right now.

Anil Dash: After the break we're going to talk about that evolution and especially about the role that tech companies now play in perpetuating digital blackface. By speaking with Kenyatta Cheese, the co-creator of Know Your Meme.

Anil Dash: Welcome back to Function. Last season we spoke to Kenyatta Cheese, the co founder of Know Your Meme for an episode that was sort of an oral history of GIFs.

Kenyatta Cheese: First time seeing a GIF. My gosh, it was probably an under construction looping GIF on a Geo Cities or an . page the first time where I saw it and understood that there was a cultural relevance to it was probably dancing baby.

Anil Dash: I invited Kenyatta back onto function to take this deeper dive into race appropriation and GIF culture, because it was something that was top of mind for him when he founded Know Your Meme.

Kenyatta Cheese: There's a time where a bunch of us were sitting around and we're watching culture flow back and forth on the internet and in particular you would see things, new jokes, new virals, new pieces of content, pop up in places that felt nontraditional. There were internet forums. Hell, there were news groups. That was awesome, because all of a sudden we felt like this was the true culture of the internet. It was emerging out of us all coming together and using it.

Kenyatta Cheese: Then there was another piece of it that wasn't awesome, which was all of a sudden we were seeing advertisers come in and appropriate these internet memes and turn them into their own for profit ads and stuff.

Kenyatta Cheese: I thought, this isn't right. No. Somebody has to set this straight. And then realize, if I recognize it, I have to do it. So, we started building Know Your Meme, which was both a internet meme database, every single time somebody sends you the same cat picture over and over again, and you're like, why are people sending me this? If you go and you hit search, you're going to get that explanation on know your meme.

Kenyatta Cheese: What's great about is that it's a resource where it's people telling their own histories. We sparked it and there's a team of folks who admin everything from the middle, but it's still people coming in and realizing that nobody's telling the story that's significant to them.

Anil Dash: We're going to get deep into it, but I want to start for folks who might not know, how does something become a GIF in the first place? When I go into my Twitter app, or whatever, I can search for somebody laughing and I get this picture back. How did that get there?

Kenyatta Cheese: We've talked before about how GIFs have had this recurrence on the internet. It's old file format, which all of a sudden becomes useful again because it's so open and because you don't need proprietary software, you can just hit play and you have this little animated loop. [crosstalk 00:00:21:52].

Kenyatta Cheese: It works anywhere, right. What ends up happening over time is this loop becomes very useful to communities, folks who are just trying to share small moments of culture where you don't have to hit a play button, there's just the thing you might absolutely love is that one facial expression that some character makes in a show or something. You can take that video clip and pour that into something like Photoshop, turn it into an animation, and then output into a format that actually works for the web.

Kenyatta Cheese: Early on there were a lot of GIFs that were made purposely as design pieces, but over time we start to see this use of GIFs as culture. This is use of, I'm going to take this one moment and I know that this one reaction face that someone's making is actually more expressive and more indicative of what I think and what I feel than anything I can express myself in 140 characters, or a thousand characters. So we start making GIFs. In particularly we started making them of TV shows and movies, which makes sense because those are cultural touch points.

Anil Dash: We talk to each other by saying quotes from movies. Or referencing funny jokes that we've seen on TV.

Kenyatta Cheese: So, might as well share that moment visually, especially in a visual medium. As that happens over time, at first you have people making GIFs because they are fans of that work, or they happen to be in a community where they know that they can drop this GIF in and people are going to react to it. People are going to get it. People are going to get that joke.

Kenyatta Cheese: But over time what happens is, as GIFs become a way for people to communicate online and the way that the culture happens online, then suddenly you see the IP holders, the creators themselves, getting involved. And they start making GIFs themselves. It's what I did.

Kenyatta Cheese: Yeah. The official GIFs.

Anil Dash: I think of the other day I looked I searched the word happy on the GIF feature in one of my apps. It pulled up Alfonso Ribeiro doing the Carlton dance on Fresh Prince. Which is obviously culturally incredibly widely known, but decontextualized is, whew, that's... There's something there. There is a little bit of buffoonery going on. In a way that, that's not Alfonso Ribeiro, but that is about what does this person represent?

Anil Dash: One of the things you realize as we started talking about this idea, just getting ready to have this conversation, was how many words. If I search happy, I search sad, I search surprised, I get back an awful lot of black people who are in character maybe, or on a TV show maybe, or in extremes in some dramatic moment in their life maybe, and are the faces of that emotion. There's a lot to unpack here, but how did that happen? Where are those faces coming from?

Kenyatta Cheese: On one end of the spectrum, you have people who are fans. People who absolutely love that moment. They're sharing it because-

Kenyatta Cheese: That's it. Right. Yeah. [crosstalk 00:12:06]. That's why they're making it. Maybe somebody takes that GIF and says, "Actually this expresses happy, and I can see that posted to this forum that everybody reacted in a way that they all agreed that this was happy."

Kenyatta Cheese: Complete sincerity. But that doesn't necessarily mean that everybody who's using it is also going to use it for reasons originally intended, or in a sincere manner. That's the, in many ways, the cultural use of GIFs and memes in the first place. You're going to take a piece of media, you're going to take it and recontextualize it, and use it for whatever it means in this moment that I have right now.

Kenyatta Cheese: The interesting thing that happens is as GIFs become more important and you have say a platform like a Giphy, or Tenor, or platforms that have indexed tons and tons of GIFs, suddenly a fluid meaning. All of a sudden that meaning becomes a little...

Kenyatta Cheese: ... a fluid meaning, all of a sudden the meeting becomes a little fixed, right? Because somebody has to make a choice, right?

Anil Dash: Right, because it doesn't have context anymore. So you've got to just pick what you think it means.

Kenyatta Cheese: Exactly, and so you're maybe starting to, if you're trying to make a GIF database, you're starting to add some meta-data.

Anil Dash: Right, and a little context here, so Giphy, Tenor, or there's a couple of these companies that are these GIF databases, they've got maybe thousands, millions. How many?

Kenyatta Cheese: Oh, just millions upon millions.

Anil Dash: And how do they make money giving GIFs to people? Is that a business? I'm a CEO of a tech company, I'm a little befuddled.

Kenyatta Cheese: Yeah, so some of them are ad based, some of them are wanting to become the repository for GIFs. Then all of a sudden maybe someone comes to you wanting to make a deal.

Anil Dash: Oh, okay. So I'm going to search for happy, and it's going to be like, "Drink a Coke."

Anil Dash: Okay. All right, so it's ads, it's the same answer as everybody else.

Anil Dash: Okay, so you've got a database of all these GIFs and they're coming up, and correct me if I'm wrong, but these are tech companies and their staff probably looks like a lot of tech companies, which is to say perhaps not proportional representation on a racial basis.

Kenyatta Cheese: Even if it does, how many people actually are aware of what it means to assign happy dance to to this one GIF from The Fresh Prince, and what kind of effect that could have, say, beyond the original context? Beyond the context of a fan community, beyond the context of a particular set of users that you think have good intentions?

Anil Dash: Or even globally, right? There's different cultural meaning.

Kenyatta Cheese: Especially globally, right? All of a sudden you're wondering, oh, you realize that they're in a position to export meaning and export the representation of an entire people, because of the keywords that they're adding to these GIFs.

Anil Dash: It's stunning that almost every one of the suggested terms in my Twitter app and my WhatsApp, the first result and most of the results will be black people, and many times decontextualized in a way that makes it a more extreme, exaggerated kind of view. Does somebody make that choice at these companies?

Kenyatta Cheese: Yeah, but the question is how aware are people of that choice, right? How many contexts are they paying attention to it one time, and you know, it's tough, right? You may think you have everything covered. You may think you've thought about what this means to a particular set of users and there's a lot more semi-wokeness among tech folks nowadays, and so maybe they're thinking about it.

Anil Dash: Or maybe they're just worried about like we don't want to have a violent image on there. They're focused on a different kind of harm.

Kenyatta Cheese: Right, right. Maybe this is something that they're not as aware of, and maybe it's not easy for people who might be sensitive to this, to raise this within an environment like that, especially in a giant production environment where you're just trying to batch a bunch of GIFs all the time, right?

Anil Dash: What is their responsibility? What should these companies be doing? Should they have a cultural editor reviewing the top GIFs?

Kenyatta Cheese: I think that might be an interesting way, an interesting approach. I think it's hard, because no matter what, GIFs and memes are things where the meaning of the GIF changes depending on its use, and that use is always local. The effect of that media though, because we can get a bunch of bits from here to halfway around the world in a millisecond, does go beyond whatever we think our local use is, and so whether it's me as an end user or a platform, it becomes a tough thing to figure out. And so one of the things that is kind of interesting, I think, as you mentioned, Anil, is what happens if you start to think about how you educate people?

Anil Dash: Well, I was going to say, you say me as an end user, how do I teach a billion people on social media this is the way to thoughtfully use a GIF without it being black face?

Kenyatta Cheese: Right. Maybe it's about how you curate those GIFs. Maybe it's about taking a look at how that user experience is. If you're getting a bunch of GIFs and it all happens to be extreme emotions and all happens to be people of color, then maybe you need to take a look at changing that up and evolving and tweaking your metadata a little more.

Anil Dash: Is there a responsibility for me as a GIF user, as a person who expresses themselves through GIFs?

Kenyatta Cheese: That's a tough one. That's a tough one.

Anil Dash: Because I tried for a while. I was like, I'm going to only use South Asian people.

Anil Dash: Right, and I had like four Mindy GIFs in a row, and then I was like, I feel conflicted about using it as a GIF right now, and that's about it. Nobody else is in here, you know? And I looked, you can scroll a long time and not see any Indian people in your app, right, and at companies that I'm sure have some Indian engineers at them. So I'm curious about what do I do? How do I learn to be thoughtful about what I'm putting out there? I don't want to hurt somebody when I'm just trying to have a good time with some silly thread online.

Kenyatta Cheese: Yeah. For me, I only use GIFs that are made by the man.

Kenyatta Cheese: A lot of people use reaction GIFs from black folks who happen to have, you know, there'll be on the local news and it's like, that's not somebody who, that person has no control over their own representation, so why should I use this?

Are we making sure the tech we create is usable for the people we say we want to help?

Accessibility is more than a buzzword. Anil speaks with Emily Ladau, co-host of The Accessible Stall podcast, Alex Haagaard, Director of Communications at the Disabled List, and Vilissa Thompson, founder of Ramp Your Voice, about accessibility bias in tech and what abled designers can unlearn in order to create more inclusive apps.

These activists are dedicated to making sure disabled people are represented in the design processes within tech and all facets of society.

Design Bias is Ruining Accessibility

Anil Dash: Welcome to Function. I'm Anil Dash. We often think of the internet and technology as this great equalizer and in a lot of ways it can be. 20 years ago, you had to be pretty well off and have a really nice home computer if you wanted to get online and access the benefits of the internet. But today, most of us, pretty much no matter our age, race, or even income level, walk around with a pretty powerful computer in our pockets. But for a lot of people, just owning that phone or device is only half the battle because a lot of the most popular apps and software and devices that we use aren't accessible to everyone. And if you're in the tech industry, accessibility has become kind of a buzzword in the last few years. But if you're not familiar with it, essentially all it means is that an app or a device is designed with all potential users in mind.

Anil Dash: So, accessibility is important and it's something that we all benefit from, but it's particularly important for people with disabilities or as I learned in the course of this conversation for disabled people. So, we're going to talk about how the language is evolving, but how technology is evolving overall. And it's part of this broader question that we're asking this season on Function about whether we can trust the internet. And one of the ways I think that those of us who build technology, whether we're designers, developers, whatever we do, one of the ways that we can rebuild trust in technology is by making sure the tech we create is usable by the people who we say we want to help.

Anil Dash: So, in today's episode, I'm talking to three activists who are using their voices to amplify the stories and the perspectives of disabled people and through that work they're completely changing the conversation about accessible technology. First up, you're going to hear from Emily Ladau. She's a disability rights activist and the cohost of The Accessibility Stall Podcast. Emily, welcome.

Emily Ladau: Thank you so much for having me.

Anil Dash: Glad to have you. So there's so many places to start, but when we talk about the conversation in particular about accessibility, one of the hashtags that I'd seen come through my timeline a bunch of times recently and really I think has provoked a lot of really interesting conversations, is the #DisabledOutLoud. Can you tell me a little bit about what it is and how it shows up in the conversation about technology today?

Emily Ladau: I actually started that hashtag to lead conversations around talking about disability. And I know that may sound redundant, but the reality is that we're not having conversations about disability, at least not in the mainstream. And so, it still seems to be this thing where we are having very quiet conversations within our own bubbles and then they escalate to the Twittersphere and then they get louder. But then how do we get out of that echo chamber? How do we get people to listen to the needs and the concerns of the disability community?

Emily Ladau: Often these concerns are things that also can impact the rest of the community positively if we could all work together. So, when I say that I am #DisabledOutLoud, what I really mean is I'm out here. I'm making noise about my disability and I'm not doing it because I want to alienate anybody. I'm doing it because I really want to bring people into the conversation. I think that too often when we have conversations about minority identity, they're not enough of a two way street and sometimes I get a little flack for saying this, but if we want the world to be accessible to the disability community, then some of that is on us to make our experiences more accessible to the world.

Emily Ladau: So that really informs the work that I do because if we are disabled out loud, if we're explaining our needs and if we're having these active dialogues and conversations with people, then I think that's how we're really going to continue to see change.

Anil Dash: I'm curious from your perspective, if you look out there, apps that a lot of people use or even tech and devices that a lot of people use, what's one that you think is doing a really good job of being accessible and seems to been thoughtfully designed?

Emily Ladau: Apps designed to make life easier for people with disabilities are the ones that I think are doing a good job. Because for me, I have a physical disability and so if I can jump on an app and order my dinner, if I can order my groceries, if I can order something from Amazon Prime, if I can have a wheelchair accessible taxi arrive right to my door, those are the things that I think are working. I look at it not from a perspective necessarily of the actual design of the app, but how the app is working to provide me the services that I need so that I can live my life in a more accessible way.

Anil Dash: One of the examples that really stuck with me was a video clip of Stevie Wonder performing on stage and I'm a big fan. And he sort of stops the show and he talks about, as somebody who has to be able to use a device without sight, he was able to use ... I don't remember. It's an iPhone or some Apple product, but he was sort of saying to Steve Job's credit, he said this was a device that I could use as somebody who was blind.

Stevie Wonder: That somebody took the challenge in making his technology accessible to everyone in the spirit of caring and moving the world forward, Steve Jobs. Because there's nothing on the iPhone or the iPad that you can do that I can't do.

Anil Dash: What was striking to me was you have this incredibly gifted artist and this really just huge cultural figure stopping to talk about a choice in designing a technology. And it felt to me so much almost analogous to how so many of us talk about seeing representation in media, right? It was like, "I was considered. I was included." I'm curious, did you ever feel that way when there is a device that's designed with an affordance that you know you can use it or there's a service that feels like it fits into your life and what you need? Do you think there's sort of an analogy there about media representation?

Emily Ladau: 100% and I think that what you said earlier on about choosing to include and accessibility being a choice, that's where we are right now. I think that accessibility is still a choice.

Anil Dash: Right. It feels optional and you get a pat on the back if you choose the option.

Emily Ladau: Exactly. We're still giving people cookies for including accessibility when first of all, it's the law and second of all, the disability community is the world's largest minority. So, if you don't care about the law, then maybe you'll care about the money because we're a huge user base. When I see something that acknowledges disability, or doesn't necessarily acknowledge it, but is also available to me in the same way that it's available to everybody else, that feels like a huge win for me. It's much the same as representation. When I see someone who has a disability playing someone with a disability, whether it's on stage or in a movie, I feel seen and I feel heard and I feel like someone said, "Hey, we actually take you seriously as a human being."

Emily Ladau: The other thing too is I want to reach a point where accessibility is not something that you get a pat on the back for and it's not even something that people have to give a second thought to. In terms of the end user, they wouldn't even notice that this is a special app that's accessible to the disability community. It's just something that's convenient and works for everybody. And that's a really good feeling.

Emily Ladau: But the fact that 29 plus years after the Americans with Disabilities Act was passed, we're still fighting for things like this means that we have a pretty long way to go.

Anil Dash: Right. Well it's really interesting because it seems in some ways that this is sort of happening at a technology level in a way that's sort of equivalent or analogous to curb cuts in the built environment, right? Where people born post ADA don't even perceive it as necessarily an affordance that was added, but just something that they've always seen around them. I'm curious if you think that that's something that we could ever see the technology evolve to be that ubiquitous?

Emily Ladau: I think so, absolutely. And there's actually, in regard to what you were mentioning for curb cuts, there's something known as the curb-cut effect or the curb cut theory. So, it's where when you're making something accessible to people with disability that's actually helping everybody and I think that the same can absolutely be said for technology. Accessibility in no way inhibits other people who don't have disabilities from using something. It actually makes it easier for them too and so if we could look at technology the same way that we're looking at curb cuts and say, "Hey, this is going to make everybody's life easier," then I think that sort of mindset shift is really the step that we need to take so that people realize that the disability community is not an inconvenience. We actually are making everybody's life easier.

Anil Dash: As we're recording this, Domino's is fighting this lawsuit about making their website accessible to the visually impaired. And it's outrageous because I've made websites a couple of times in my life.

Anil Dash: It may be some work to make a site accessible, but it is not outrageously expensive at the level of Domino's level of revenue. And yet it must certainly cost far more for them to fight this lawsuit all the way to the Supreme Court. So, it seems like they're really, really resisting what would seem like a no brainer. You want people to buy more pizza. So, I'm curious about that, that give and take of as more people are disabled out loud, as we hear more voices from people who are disabled. Is this an example of it's more visible if they're fighting back or are things getting worse or better?

Emily Ladau: There's definitely been a noticeable shift in recent years of lawsuits regarding website accessibility and it's unfortunate. But that is one of the only ways to enforce the laws that we have on the books is to file a lawsuit and so that's where we are right now. But I think there's this misconception that disabled people are lawsuit happy and that we just file a lawsuit every time something is not accessible to us, but nobody really takes the time to think about how it must feel to not be able to order pizza from Domino's. I mean I don't want to be seen as a charity case or the right thing to do.

Emily Ladau: Including me should not just be the right thing to do, but at the same time I do think that there's something to be said for a shift that the public is having in general and they like companies that have good ethics and good values and that show that they value inclusion and diversity and that everybody is welcome to use their product or engage with their service. And so, it's not really great PR when you have articles coming out saying that Domino's is pursuing a lawsuit that could potentially ruin web accessibility for everyone. I mean, I don't really know who at the top was thinking when they let this go forward, but yeah, it's bad business. If nothing else, it's bad business.

Emily Ladau: I think a perfect example is the report that came out just a little while ago about how the websites of the presidential candidates were pretty much an accessibility nightmare. And so from that perspective, whether it's the fact that a screen reader is not able to use it or that someone who has epilepsy is looking at flashing icons or flashing images and then immediately has a seizure or gets sick from what they're looking at, that's a concern because it's literally blocking people from engaging in public discourse. And so, we tend to think, "Well, the people with disabilities are not actually coming. They're not here. They're not engaging." No, we're trying to. You're just making it really difficult. And it doesn't just inhibit people from ordering pizza. It's things like applying for jobs online. It's things like actually being able to get in touch with a doctor. We have to be looking at accessibility from a standpoint of this impacts every area of a person's life.

Emily Ladau: And right now, one thing that I'm thinking about as someone who identifies as having hearing loss. And one really awesome piece of technology is something called Internet Protocol Captioned Telephone Service, or IP CTS for short. And so right now there's a small charge in your phone bill that helps the Federal Communications Commission fund IP CTS and it allows people who are hard of hearing or deaf to get a special telephone that allows them to have a conversation with people and in real time they get captions that are a mix of automatic speech recognition technology and a live skilled transcriber who's also on the line so that it's completely accurate. And so that you're getting the information from the person that you're conversing with.

Emily Ladau: And so, the FCC is like, "Hey, well why don't we look at automatic speech recognition only and move away from having a skilled transcriber?" But right now, automatic speech recognition is not yet advanced enough that there aren't biases in terms of perhaps someone who has an accent or someone who has a speech impediment or something like that. So, it could change the accuracy of the conversation, which could mean the difference between a doctor's saying, "Hey, you need to take 0.5 milligrams of a medication," versus five milligrams of a medication, which could be pretty dangerous. But it could also just mean that you hear the wrong address or that you get the wrong information about an address to meet up with a friend.

Emily Ladau: So, the FCC is like, "Hey, we want to save money and so we're going to look at automatic speech recognition." No, we need to be ensuring that people with disabilities have equal access to things like communication. And so cost cutting is a big, big issue where we're like, "Hey, well people with disabilities, we can just not necessarily heed what they actually need. We can cut costs. We can try to give them some access. We can change things here and there." No. The Americans with Disabilities Act calls for full and equal access to things like communications.

Anil Dash: There is this underpinning to what you're saying that so much of this is about reframing the discussion and-

Anil Dash: Much of this is about reframing the discussion and going from an afterthought or a not even thought or an optional thing or an add-on into something central and core. It seems to me at some level this is also about whether the people creating technology themselves see that one, this matters, two, whether there are clearly enough people who identify as disabled involved in creating technology. It seems like a lot of this is about who's at the table, who has a voice, who's making the design. Is that something that you think is changing and evolving?

Emily Ladau: I think that it's moving in that direction. There are technology companies that are 100% leading the way on being more inclusive of the disability community. I know just personally, for example, Microsoft has an autism hiring initiative and they have autistic people who actually consult on that. And then they have a chief accessibility officer who identifies as having a disability, and so there's definitely motion in major tech companies to be inclusive of disabled people on the product side of things and not just on the end user side of things.

Emily Ladau: But I think that right now the problem is we want to have people with disabilities at the table, but there are still metaphorical steps up to the table. And so I always say, let me have a seat at the table. I come with my own chair. You don't even need to give me a chair. Just give me a seat at the table and let me weigh in before you design the product because you'll save yourself a lifetime of hassle with the feedback from people saying, "Well, this is not accessible because you didn't think about it in the first place." So yeah, it's not just about thinking about your end user. It's about having a diverse range of people working on what you're doing in the first place so that the people who were making the product look just like the population of end users.

Anil Dash: Well, Emily, I think on that note of making sure we are incorporating and thinking about people with disabilities at every level of what we do, thank you for joining us on Function and thank you for raising the voices of everybody who is a disabled out loud.

Anil Dash: As Emily pointed out, it's not enough to just have disabled people in mind when we're creating our apps or software. Instead, we have to actually invite disabled people to the conversation and actively listen when they identify their needs. After the break, we're going to hear from an activist who's pushing tech to do exactly that.

Anil Dash: Welcome back to Function. We often hear the term a seat at the table, but I got to ask myself, what does that really mean? Like a lot of people, I've had the experience of being invited in to have a seat at the table and found out I was a token. I didn't really have a voice. I didn't really have any power. And that experience was sort of top of mind for me in all of the conversations I've been having with disabled people about how technology needs to meet their needs, because obviously, it's important that we think about how disabled people will interact with the software or the tech that we create, but it's even more important than disabled people have the power to directly impact how that tech is created in the first place.

Anil Dash: Alex Haagaard is a disability activist. They're the director of communications for The Disabled List, which is a community of disabled design consultants.

Alex Haagaard: We essentially provide consulting services for designers, design researchers, companies who are looking to integrate disability into their design process in a more meaningful and holistic way. Presenting ourselves is a little bit of a challenge to traditional design thinking and even co-design approaches where we often find that users, and especially when it's users who are sort of in a marginalized social group like disabled people, they're sort of approached with a concept and then they're asked to validate that concept, and what we're trying to develop is a methodology to do what we call disability-led design and look at a disability as a creative opportunity in and of itself, looking at the ways in which moving through the world as someone with a non-normative body mind actually affords you a really interesting perspective that can be really useful from the earliest stages of a design process.

Anil Dash: So it's a really interesting approach, and it sounds to be like a lot of this is just getting involved in an earlier stage than is often considered.

Alex Haagaard: That absolutely is a big part of what it is. That's sort of the thing we struggle with. We don't necessarily have a problem with inclusive design per se. The problem we have is that the stage at which disabled people are often brought into a project, they don't actually get to control the agenda of the project. That agenda's already been set. You have the design brief and then you bring the users in. And what we're trying to sort of argue and trying to find a way to embody is that you need to bring users in before you decided on your concept.

Alex Haagaard: You need to open it up with a really open-ended conversation, and then also just sort of really practical level things, like we've had researchers come to us and say, "How do we even recruit disabled research participants? How do we ask them about their disability in a way that isn't offensive?" People are always really, really worried about being offensive, but it's been really interesting because through those conversations we've also identified that using diagnostic labels to recruit disabled user research participants actually doesn't give you really good insight into the distinct categories of user experience they might have. So it's been this sort of organic process of working through with both disabled people on the user side of things and with design research is to find out where those gaps in knowledge are and basically try to bridge those.

Anil Dash: You sort of flagged this anxiety or concern about being offensive or more affirmatively phrased, a desire to be thoughtful or sensitive. And I think this actually is very analogous to many forms of advocacy around any community that's underrepresented, which is language really matters and representation and presentation really matters. And one of the things that I noticed is you say disabled people. I have read as somebody who still has a lot to learn, in most of the writing I see, is we sort of start with people. So we say people, whether it's people of color, like there's an identity that is people first, and then the descriptor is a facet of them, but let's start with them being people. I was surprised to hear a different phrasing there, and I would really appreciate getting to learn about the significance of inverting that order.

Alex Haagaard: Yeah, absolutely. And I really appreciate the chance to talk about this because it's something that comes up a lot for us in our practice and it's something where the conventional wisdom actually goes against what a lot of the community tends to feel most comfortable with. And yet, when you look at sort of institutional academic resources, they all use what we call person first language, people with disabilities versus, what we call identity first language, disabled people. But the thing is with this identity first language is that it really is about claiming disability as an identity and as a category of experience and even as its own distinct culture.

Alex Haagaard: With people with disabilities, it sort of came into vogue, I would say sort of even 20 to 30 years ago within mainly academic spaces, advocacy spaces, but notably advocacy spaces that weren't really led by disabled people, that were led by parents or sort of researchers or educators who were fighting for the people with disabilities. I'm doing air quotes right now, which you can't see.

Alex Haagaard: For disabled people, putting that disabled first, what that means is that it's not something that's separate from us. It shapes every aspect of our experiences. For instance, I'm a wheelchair user. I'm also autistic, and it shapes the way I move through the world. It also shapes how I interact with people and it shapes how I think. You cannot separate my disability from me, and I think that's really the key thing here. When you say with disability, it sounds an add-on, it's an accessory, and when I say that I'm disabled, that's just me.

Alex Haagaard: But in terms of an actual research perspective, that becomes really, really important because the argument that we're trying to make is that disabled identity and culture provide an entryway into this unique type of knowledge, and you can't get that by taking a person first language-based approach. You can't access that cultural knowledge unless you're actively seeking out the people who identify with that label and with that particular culture and community. That's why we actually think it's really important to use that distinction and when you're sort of seeking out disabled research participants to actually specifically seek out people who claim that identity, because that's going to afford you the access to that cultural knowledge as well.

Anil Dash: There's this sort of refrain that comes up around essentially asserting yourself into a lot of systems that weren't designed for you, right, and to sort of say, "This is a place that I should have." And that's particularly interesting because I think if we look at technology, there's absolutely a paternalism, right? I can't tell you how many times I hear people in tech say ... Steve Jobs said, "If you asked people what they'd want, they'd tell you a faster horse and I gave them a car, but if you ask people what kind of social network they would want, they would say one that doesn't spy on you." So some of that condescending, "We know better than you," stuff isn't necessarily real. I'm curious if you think part of what the disabled community can help abled people learn is how do you assert your needs into a system that wasn't designed for you?

Alex Haagaard: Oh, I think absolutely. And just speaking to the tech example, I think that one of the most interesting possibilities of disabled people sort of engaging with design process is the ways in which we adapt systems, products, spaces that aren't built for us. And this is what my partner at The Disabled List, Liz, talks about. She says that disabled people are the original life hackers. I've seen this on Twitter for instance, where people who are geographically isolated and often very socially isolated because we don't have access to accessible transit, because we're poor, because our bodies are unpredictable, which makes it sometimes hard to get out to a concert at night or what have you, and have built these incredible online communities.

Alex Haagaard: A friend of mine actually had an online birthday party where people got together on Twitch to stream TV and chat together, and these were people who were all over the US. I'm based in Canada, and it was this sort of virtual presence. And I don't think that that's necessarily something that an person would sort of identify as a way of using that technology necessarily, that you can create this kind of virtual presence. We have all these discussions about what does presence mean now that we're moving into sort of AR and VR, and this is a really interesting, practical, incredibly simple actually application of it.

Alex Haagaard: And similarly, as a chronic patient, a chronic patient with a number of rare illnesses that took literally decades to get diagnosed, I think there's an incredible opportunity that's being missed out within the healthcare field, which is the incredible volumes of knowledge and sort of diagnostic information and even treatment plans and management strategies that are constantly being shared by people with chronic illness across Twitter, across Facebook support pages, and it's often stuff that sort of has just been passed through the community, because when you've got a rare illness, chances are that most of your doctors are never even going to have heard of it and certainly aren't going to know how to treat it or necessarily even where to refer you.

Alex Haagaard: So it's this knowledge that just sort of just gets passed through the community and yet isn't somehow being accessed at all by healthcare systems. And I find myself thinking ... I was literally diagnosed by someone on Twitter who lives in the UK. Read a blog post I'd written and said, "You need to ask for referral to be checked for this." Turns out that is what I had and now I'm treating myself and able to manage my symptoms and was able to get back to work as a result of that one little interaction on Twitter. That simplifies it. It was also like three years of fighting for care after that, but really, if that one interaction on Twitter hadn't happened, I probably wouldn't be here talking to you.

Alex Haagaard: I think that the ways in which we sort of build communities online and share information is a really, really powerful potential resource within a lot of communities. And I think sort of trying to get back to your original question is that yes, I think the way that we often have to fight and advocate for ourselves, I think that is really important for users, but I also think it's not even necessarily so much about the advocating. It's not so much about teaching users how to advocate themselves, but it's about teaching designers I think how to listen or even how to ask questions. This is something I keep coming back to, which is that designers are trained to find solutions and to provide answers and so I think the key is really that we need to start teaching designers not so much how to provide answers, but we need to start teaching them more so how to ask questions.

Anil Dash: So you talk about this evolution that has to happen in how we create products, how we create technology and how design needs to evolve to be about the questions rather than supposing the answers. And I'm curious if you think about, there've been a lot of attempts at making tech or apps designed sort of quote unquote "for disabled people", right? Almost as a separate audience. And it seems to me, typically they're not particularly successful, certainly compared to apps that are designed for everyone. I'm curious if you think, is there a reason that this approach doesn't work or am I wrong and that sometimes it does work?

Alex Haagaard: No, I think you're exactly right and I think there are a couple of different reasons for this. I think that one of the reasons and the one that's sort of most broadly applicable to design in general is that when designers seek to solve a problem for disabled people, when abled designers seek to solve a problem for disabled people, oftentimes they're coming up with that problem on their own. And this is the thing going back to where the disabled people or where the users are brought into the design process. When you come to users with a concept already, you've already defined your problem and effectively, sort of at least within a very broad field, identified roughly what your solution's going to look like. You've identified sort of where your solution is going to lie anyway. And so when you go to users to then sort of find out how to do that, you've already sort of closed off the discussion, disability dongles, and that's essentially useless or potentially even harmful solutions to a problem that designers have identified disabled people as having that we never actually knew we had in the first place.

Alex Haagaard: ... disabled people as having, that we never actually knew we had in the first place. Examples of that are things like, I remember there was coverage of a kit that was designed a few years ago where people could simulate the experience of being autistic by putting this bizarre, bulky rubber mouth guard in their mouth. And apparently that was supposed to simulate sensory experiences or something to make non-autistic people interact more easily with autistic people. Because it was to help them build empathy with us or sort of- [crosstalk 00:00:37].

Alex Haagaard: It was so bizarre, and it got coverage in a couple of really big design blogs. And I was just like, I don't understand where the thought process behind this even came from. There's this weird disconnect that because designers aren't necessarily tapped into these cultural issues, the problems they're identifying aren't actually the right problems. And therefore, the solutions they're coming up with are also very definitely not the right solutions.

Anil Dash: That sounds pretty profound. And then I think about the scope of the challenge ahead, right? There's a lot of work to be done, and everything from how you shape policy to how you change process. Those are all aspects of it. But if you sort of look forward, and you could, let's say wave your magic wand and make a couple things happen, what do you think are the wins that you would like to see happen that are doable, that sort of feel like they're right in front of you that would make a huge impact?

Alex Haagaard: When we provide workplace accommodations, we legislate that they are to be provided if they're reasonable accommodations, and they don't cause an undue burden for employers. And what's so interesting about what that ends up meaning in practice is that reasonable accommodations are the accommodations that enable a disabled person to approximate being abled, like a ramp for wheelchair user to get into building. If a wheelchair user needs a ramp to get into their workplace, and then they can go and sit at their desk and type or conduct interviews or what have you, at that point, they're effectively abled within the very limited context of their job. And that's not to erase what their experiences in the larger world would be. But from the perspective of their employer, at that point, they're not really any different than an enabled person.

Alex Haagaard: And I think that's often something that gets emphasized when we talk about the importance of employing disabled people. There's always this sort of need to have a hook to justify it. And we talk about how disabled people can be more productive, and they'll have greater job loyalty, and things like that. And what that really leaves out is the whole swath of disabled people who no amount of accommodations will ever enable their bodies and minds to approximate being abled. So for instance, I'm chronically ill, and I have narcolepsy, which is now more or less well managed, and I have chronic pain and chronic fatigue. And there are some days that just because the weather decided to be a thunderstorm outside or because there was some loud noise going on in the apartment above mine, I wake up with a migraine, and I can't get out of bed that day. Or desk chairs tend to cause my hips to dislocate, so sometimes I just really need to be able to work from my bed at home. And those are not accommodations that are sort of readily accepted, especially if you're unpredictable.

Alex Haagaard: One of my favorite things about working with Liz at the Disabled List is we both understand if one of us needs to disappear for a day or two or three. We'll pick up the slack as best as we can, and if something sort of gets pushed back a little bit because of that, that also has to be accepted. And I think that's a really, really hard thing for employers within our current sort of industrial capitalist landscape to embrace. But I think that by finding ways to embrace it, by finding ways to embrace people who are never ever going to be able to approximate being abled, there would be a lot of knowledge and insights that they could gain from those people as well.

Anil Dash: Wonderful. Alex, thank you so much for joining us on Function, and thank you for the work that you do at Disabled List.

Alex Haagaard: Thank you so much for having me.

Anil Dash: As Alex and Emily pointed out, one of the ways people often discriminate against disabled people is by minimizing the diversity within the disabled community. As it turns out, racism is a thing in disabled communities just like it is in every other community.

Vilissa Thompson: When people think of disability, what is the vision that comes to mind? And it's usually that of a white disabled person.

Anil Dash: That's Vilissa Thompson. She's a social worker and disability activist whose work focuses on the black disabled experience. A few years ago, she brought attention to the overwhelming whiteness of the disability activism community with the hashtag DisabilityTooWhite.

Vilissa Thompson: The hashtag came out of a conversation that I saw online featuring articles surrounding disability and beauty, people being upset that the article featured white disabled women. And when I joined in the conversation, the hashtag just kind of popped into my head, and it just kind of grew from there. It went viral within the first 24 hours and is still being used three years later to really keep the conversation going about racism within the community and how the lack of diversity and representation of disabled people of color impacts our lives from just the visual representation of us in media, to how we are viewed within the charity model or pity model, to whose stories get told when it comes to disability history, who gets included, who gets excluded or whitewashed, and talking about the racism within the community.

Vilissa Thompson: A lot of people may not realize that there's a lot of racism within the community. There's a lot of white leadership that is problematic. This hashtag allowed people to be able to conceptualize the things we may have been talking about privately or just thinking about amongst ourselves and just really have something to grasp onto that really allowed us to have very open conversations. And I think that over the past couple years, we're discussing race in the community. We've been able to call out problematic leadership, been able to really force organizations to think about their over-whiteness issue and to really consider racism and race more within their policies and within the work that they're doing.

Anil Dash: I think in a lot of conversations about major social challenges that we face, those problems disproportionately impact people of color, disproportionately impact black folks. And I'm curious about an issue specific to accommodating disability in society. Is that something where you do see an over indexing of the proportion of people who are impacted who are black or who are people of color?

Vilissa Thompson: Oh yes. Within every side of the issue, disability is a key player in discussing those policies, and yet it gets ignored. And when we discuss these policies, we don't discuss how the intersections of being a person of color and disabled plays. Whether you're talking about the education or [inaudible 00:07:53], unemployment, race plays a very big factor in discussing disability within those topics. Black and Latinx, Hispanic folks have some of the higher rates of unemployment within the community.

Vilissa Thompson: So even in that type of target subject, we really have to pay attention to how are disabled people being impacted collectively and who's being greatly disadvantaged more so than the others that are not getting the attention. With me and my work and with other particularly black disabled activists, we've been very purposeful and intentional to really get people to understand how intersectionality impacts our community and to really allow disabled people of color, particularly in this case, black folks to be at the table and to really give them the space to share how an issue like unemployment or underemployment impacts our community. And what does that look like? I always tell people that as a black disabled woman, I cannot fragment myself. And there are instances where I may not be able to tell which identity someone may be discriminating against me for.

Anil Dash: I'm curious about your perspective. If you look at the tech world in particular, you look at the apps that's out there, the devices that are out there, are there ones that you think are doing a good job of anticipating the needs of a broad swath of disabled people?

Vilissa Thompson: I think that for me, the one company that I really have enjoyed seeing how they integrated technology has been Apple. And I say that because I have an Apple Watch. And currently to my knowledge, Apple Watches are the only kind of health watch or fitness watch that has the ability for wheelchair users to track their rolls. And as somebody who has a manual wheelchair, it's pretty cool to be able to track how many rolls that I did today, which is my version of doing steps.

Vilissa Thompson: I really think that, in many ways Apple has, for me, led the way to being forward thinking in their technology and also including this accessible technology within their products and not having to go out and buy additional software. It's a double-edged sword with Apple, because it's great so you don't have to go out and buy the resources, which cost money. But also on the negative end, Apple products cost money. And when you're dealing with a community like disabled folks, who many of us are on social security, again, I bring up the whole unemployment rates, we may not have the funds to buy the laptops or the watches or the iPads that can really be utilized by us, particularly when they have the tools already built in.

Anil Dash: One thing I got to say, you're in South Carolina. You have got the wonderful South Carolina accent. We have voice recognition technologies. We have smart speakers. We have all manner of tools around us. And I see this in my own family, where my parents have the accents from the region of India that they're born in. And a lot of these tools don't hear every wonderful accent. Or even when we get into facial recognition and those kinds of things. Is my skin tone one that this system is going to recognize and respond to? How much do you think that's going to rise as an issue, particularly for disabled people?

Vilissa Thompson: Oh yes, it's already an issue. There's certain disabled people who may have a certain dialect that may be caused by their disability. And if you have a certain user technology that may not recognize that, they may not be able to use that technology. I know that for me, I kind of avoid using Siri, because sometimes she gets it right, and sometimes she doesn't. So, there's already an issue there. And I think that if we don't include disabled people and those of color at these tables of technology development to ensure that the accent, the dialects, the effects, the way that people talk, or way they look are respected and represented and not be so whitewashed and white-based, disabled people of color and other people of color are going to get behind, as we already are.

Vilissa Thompson: I know that for me as a lighter-skinned black woman, something simple as using the soap dispensers in certain places, where sometimes my skin tone is read easily, sometimes it's not. And I know that somebody who's darker than me will have more difficulty using those type of soap dispensers. Things like that, that people don't really think about that is really impacted when there aren't enough people of color at the table. And I really want these industries to really think about that. If you're looking around your room, everybody looks like you, and there's not a person who has a different dialect or different accent or different experience, then how can you effectively create technology that would be effectively used and inclusive to everybody?

Anil Dash: We've all lost a lot of trust in the internet, and there's a lot of good reasons why. I think we were introduced to the internet, or to technology in general, as this great equalizer that was going to empower us all and tear down these barriers that get in our way. But the truth is just like we run into bias in the real world, we've replicated a lot of those biases in the digital world. I know what it's like to be excluded, and yet, I've still perpetuated that online. I created sites that maybe met the checklist for accessibility, but they didn't center the experience of disabled people, and they weren't in the room when it was created. And so I've gotten this wrong despite having good intentions.

Anil Dash: That's been sort of humbling for me in all of these conversations to realize that I didn't know what I didn't know. It's been really insightful for me to listen to Alex and Emily and Vilissa and many others as they've talked about their experiences as disabled people. Shifting the conversation from being accommodated to actually being empowered to create the technology that they need. And one of the key takeaways I have from this is that by doing so, by actually including disabled people when we make our technologies, that maybe tech can be that great equalizer that we were promised it would be.

Anil Dash: That's it for this episode of Function. We'll be back next week with a new episode.

Anil Dash: Function is produced by Bridget Armstrong. Our Glitch producer is Kesha "TK" Dutes. Nishwat Kirwa is the executive producer of audio for the Vox Media Podcast Network, and our theme music was composed by Brandon McFarland. Thanks to the whole engineering team at Vox and a huge thanks to our team at Glitch.

Anil Dash: And you can follow me on Twitter @AnilDash, but you should also follow the show @PodcastFunction, all one word. Please remember to subscribe to the show whenever you're listening to us right now, and also check out glitch.com/function. We've got transcripts for every episode up there, apps, all kinds of stuff to check out about the show. We'll be back next week, and we hope you join us then.

Does the internet help or harm our mental health?

In this season two premiere of Function, Anil explores how the web made an impact on his mental health and talks to experts like Dr. Elias Aboujaoude, Stanford University psychiatrist and author; and web creators Desi Rottman and Angelo Stavrow about the how the internet is changing the way we see ourselves and interact with others.

Together, they explore the consequences of our love affair with the internet and discuss ways to use the internet to manage our mental health.

We Can't Just Log Off: Mental Health and Tech

Anil Dash: Welcome to Function. I'm Anil dash. The idea for this season of function came from me reflecting on the fact that I have now spent most of my adult life on the internet. Despite that, now more than ever, I don't know if I can trust the internet. I mean, it's a scary place. Every time we pick up our phones or open our laptops, we take chances with our privacy. Everywhere you turn, you're hit with hate speech or harassment online. We're inundated with misinformation. But when I first got on the web, it didn't even occur to me not to trust it. You see, I was in my twenties and I was in a pretty dark place in my life. Before I tell this story, I want to give a little bit of warning to you that we're going to be talking about depression and even self-harm. If that's a topic that's sensitive for you, take a moment, catch your breath, but I hope you stay with us for this story.

Anil Dash: Back in my mid twenties I was living in Spanish Harlem, uptown in Manhattan and things were not going my way. I think we've all been there. I didn't have a job. I did not have the relationship that I'd wanted anymore. I did not have any money in my pocket and on top of that, I had been, for years at that point, struggling with my mental health. That led to the moment where I was walking down the street in Spanish Harlem and there were people all around, but I definitely felt very alone and I felt very strongly that I wanted to end my life. It was as painful a moment as you go through, but not long after that, maybe because I was looking for an escape from my problems, I turned to something that I'd always loved, which is technology.

Anil Dash: I grew up having computers, but there was something new happening. Blogs were just starting to become a thing and we didn't have today's social media, but we had the beginnings of that way of connecting to other people online and that's what happened. I made connections to people who, in some cases, are still my friends today. I don't say this to be cliche, but the internet saved my life. It gave me a connection that I needed and in some ways it gave me a reason to go on. I was lucky to find a way of getting better, you know? For me it was everything from good medical care and diet and exercise and medicine and all that stuff. I'm very grateful for that.

Anil Dash: Today I have a great job where I run a company that I'm proud of and I get to work with amazing people. I have a wonderful family and friends and I get to channel all that energy into hopefully making technology that can help other people too. Maybe make their lives easier or help them find that kind of connection that I found. But for a lot of people today, it is hard to imagine a world where the internet is good for your mental health instead of just being a source of stress and anxiety. Sometimes I honestly wonder if it's worth it at all. If the benefits of being on the internet and connected to social media are outweighing the risks to our privacy and even to our mental health.

Anil Dash: We can't log off. Most of us are not going to delete our Facebook accounts or our Instagram accounts. Even if you did, there are definitely some other aspects of your life that are connected to the internet anyway. Given that reality, this season on Function, we are asking the unavoidable question, can we trust the internet? To answer that question, we are going to be talking to some of the people who warned us about the risks and the harms that were coming our way. We're also going to talk to the people who are trying today to make the internet a better place. We're going to start by looking at the ways that technology affects our mental health. From the earliest days of the modern internet, doctors and researchers were already warning us that our relationship with tech was manifesting almost like OCD.

Dr. Aboujaoude: Originally, my work very much focused on obsessive compulsive disorder and with the internet revolution unfolding, we started seeing patients whose relationship with the internet was really described and felt compulsive, so it made sense for them to come to the obsessive compulsive disorder clinic.

Anil Dash: Dr Elias Aboujaoude is an author and a psychiatrist who teaches at Stanford. He's been studying tech's effect on our mental health for 15 years.

Dr. Aboujaoude: We very quickly realized that the whole focus on internet addiction, quote unquote, was really missing the point because so much was going on and people who couldn't be described as addicted but who were being transformed psychologically by the internet. Eventually as I became more and more convinced that these technologies, of course, are here to stay and here to become more powerful and ever faster and ever all consuming, I started looking for a possible silver lining and I found that in tele mental health, basically applications that rely on technology and that aim to provide mental health treatment. Increased access to care, possibly make care more cost effective.

Anil Dash: I talked to Dr Aboujaoude about the internet and social media, how it's changed the way we see ourselves and even how we interact with others.

Anil Dash: I'm curious to start from a very high level. How do you think our adoption of technology has accelerated over the last several decades, has changed the way we look at ourselves or think about ourselves or interact?

Dr. Aboujaoude: I think we think of ourselves as basically a spread across almost two spheres now. There's the real life definition that we've always had of ourselves, but there's an increasingly dominant ambassador that we have in the online world. Increasingly that persona takes up more and more of our energy and increasingly we define ourselves more and more as a function of this online footprint.

Anil Dash: Is that different than the effect that other technologies had when they came into our lives. Whether it was television, radio, whatever else. We brought other devices into our home, we've had other things we plug in.

Dr. Aboujaoude: Sure. No, we've brought other devices. We've brought other media. When novels first came around in the 18th and 19th centuries people warned about them and wondered whether they would spell the end of culture and of civilization. The same happened with radio and the movies and then TV. With each and every wave, there are these deep transformations and these significant red flags.

Dr. Aboujaoude: With internet related technologies, however, it's been very different for two main reasons, I think. First of all, the breakneck speed of technology evolution is such that before really we've had a chance to catch our breath and begin to understand it, it's already moved on to something that's faster, that's more engaging, et cetera. This leaves a researchers and leaves us as a culture perennially behind in terms of understanding it.

Dr. Aboujaoude: The other big difference is the degree of interactivity. Much more so than any of the other media that I mentioned. This is important because it helps explain this very rapid adoption. If you're playing a video game, for example, video games reward you or punish you, they talk back to you. It's a very different experience than somebody who's relatively passively watching TV, let's say or minimally engaged in a movie. That's another difference that I think helps explain the speed with which our culture has been transformed and how difficult it is for us now even having realized some of these negative things that have come with the internet revolution. How difficult it is to try to achieve some sense of balance between our online lifestyle, but also being in the moment offline, in real life, with real relationships and feeling okay about it.

Anil Dash: You referenced a little bit there what the research shows. When did research starts showing the internet or our digital technology consumption having an effect on our wellness, our health, our emotions?

Dr. Aboujaoude: Then red flags for a long time now. Some of the earliest case reports date back to the late '90s. The patient zero if you will, was described around 1996. Yeah. There have been red flags all along. I think as a culture we refuse to see them. It was a love affair that evolved very quickly and with every new iteration, every new operating system, there was a reflex that meant that you absolutely had to move on to this new, better, flashier, faster device and platform. We did that really without pausing and asking what was going on psychologically. If we had paused and asked ourselves those questions and looked at the research that was already being published, I think, again, the red flags were there to be seen.

Anil Dash: Are there differences in the manifestation of technology's impact or the Internet's impact on people that vary by culture, vary by age group, vary by demographics, vary by geography?

Dr. Aboujaoude: I wanted to believe that. I've had an opportunity to talk about these issues and talk about my work across continents and to very different audiences, different in terms of cultural heritage, but also very different in terms of age groups, socioeconomics, and the more I had the opportunity to speak to diverse audiences, the more convinced I am that this is basically a universal phenomenon. A lot of the issues that we're discussing are relevant to people who may share little else. A lot of the focus on when it came to problematic internet use and video game addiction was on digital natives, right? They grew up with these technologies, they didn't know life before Google, so we all assume that these issues are going to be much more problematic in that age bracket. The more we study these issues across the entire age spectrum, the more similar these forces and these transformations appear to be. I think when it comes to the negative impact and the forces that we're talking about, we're more similar than different.

Anil Dash: There are a lot of people that have found positive things online. My experience was that I grew up very isolated. I was in a community where there weren't people like me and I've seen this from people in a lot of underrepresented groups or minority groups where they say they found commiseration online. They found identity online. They found people to relate to online. I'm curious about that sort of balance about some of the positive human interactions. Is that also something that you see in the research? Is that something that's consistent or across different communities as well?

Dr. Aboujaoude: There are definitely many positives to be found online. As a practicing psychiatrist, I treat many patients with social anxiety disorder, for example. For them, social media and the opportunity to interact with someone online, break the ice, initiate a little bit of conversation before meeting them in person, makes a huge difference and it's a very positive difference. We don't want to ignore that. I think if we approach the internet and internet related technologies as a medium, that's one aspect of our life, but try to find a balance that integrates it along with other things that are meaningful to us and other activities, I think we're more likely to use the internet responsibly and more likely to experience its positive effects and its benefits, than if we allow it to dominate and take over.

Function with Anil Dash

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