"I want to reach a point where accessibility is not something you get a pat on the back for. And it’s not even something ppl have to give a second thought to the end user... It’s just something that’s useful for everybody."
— Emily Ladau
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.
Big thanks to LinkedIn for supporting the second season of Function.
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.
Emily Ladau: Thank you so much for having me.
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.
Anil Dash: We can hear them.
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].
Anil Dash: What? That's mind-boggling!
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.