Elsa Sjunneson joins Nikki and Sam on Episode 6 of Disability Bandwidth! Historian, advocate, writer, and self-described deafblind hurricane, Elsa discusses her work and perspectives on ableism, eugenics, representation, and more.

References

Transcript:

[00:00:05] Nikki Nolan: Welcome to Season One of Disability Bandwidth.

[00:00:11] Sam Proulx: a show where we talk with disability leaders each week about career, life and technology.

[00:00:17] I’m Sam Proulx.

[00:00:17] Nikki Nolan: And I’m Nikki Nolan

[00:00:19] Sam Proulx: Let’s get started.

[00:00:20] Nikki Nolan: Can you introduce yourself?

[00:00:21] Elsa: My name is Elsa . I am a deafblind hurricane in a vintage dress, which means that right now I’m wearing bilateral hearing aids that are pink and lavender. I’m wearing glasses that are gold and light blue, and that matches my cataract on the right side, which is an Aqua white. Left eye is gray.

[00:00:41] I’m a caucasian woman with brown hair with very fading, teal highlights. My pronouns are she/her and I am an accessibility specialist.

[00:00:50] Nikki Nolan: We’re so excited to have you here. We would love to know your story. What got you into your line of work?

[00:00:55] Elsa: So I’ve been an accessibility and disability activist and advocate since I could talk. When you’re born deaf blind, you really don’t have the choice of anything else. You can either just sort of hang back and let things happen to you, or you can advocate for what you need and want. And so I’ve been advocating for myself since I was a kid.

[00:01:14] And what that means is that by the time I was in my twenties, I wasn’t just doing the work that I was doing, which in my case was at the time being a historian. But I was also spending my time self-advocating and advocating for others and university systems and places that I’ve worked and also in local governments and the federal government. So I’ve been doing disability activism and advocacy for most of my life, but professionally I’ve been doing it for about 10 years.

[00:01:43] Sam: You know, that brings to mind something that I’ve talked about with a couple of people, professional advocacy for others, and self-advocacy can be very different. How did you find that kind of move between self-advocacy and professional advocacy? Do you find one is more challenging or moves faster or is easier or more fun? How do you find those things compare?

[00:02:13] Elsa: I mean, I’ll say that it’s a lot more fun to be out in the street, marching with a bunch of other disabled people than it is to be sitting in an office, explaining to someone how WCAG works. But they’re both advocacy. I would say that it moves more quickly when you’re doing it for yourself. When it’s just you in a room with another person saying, this is what I need to do my job, or this is what I need to learn.

[00:02:35] When it comes to advocating for a larger group of disabled people across the company, or even governmentally, it becomes more complicated because you’re not just talking about one individual accommodation. You’re talking about how to accommodate for a vast variety of disabilities across the spectrums that include blindness and deafness, but neurodivergence, mobility. And that changes the way that we can advocate and how many things we need to explain to people.

[00:03:03] Sam: Yeah, absolutely. I know when I started doing this professionally as a completely blind person, I fell into that trap thinking that I knew more than I did and could represent more people than I can. Have you found that a challenge?

[00:03:21] When I first started, it was a lot harder. I will say that. But because I’ve spent so much time talking to other blind people, which has been part of the work, right? Like we have to talk to each other, it has become easier for me to talk non-disabled people through other experiences. I was literally explaining why we have to be careful about how we present information through screen readers today.

[00:03:45] Elsa: Because it’s not just about the information itself needing to be there, but how we present information in a non visual way when it’s being translated through a visual lens. And that’s a really different way of thinking, But it was a lot harder at first. And one of the things that I’ve learned is that I always have to couch it and I am deafblind, and I am my own deafblind person.

[00:04:06] And that’s why I’m not speaking as a representative of a community, but I’m speaking as a professional, within a space where I have done a lot with learning. And those are two different things.

[00:04:15] Sam: Absolutely. And sometimes if you don’t state it up front, people will absolutely misunderstand and assume that you are representing all people everywhere unfortunately.

[00:04:27] Elsa: Oh, and they really like to, when they get angry,

[00:04:30] I had a Radiolab episode come out a couple of weeks ago about Helen Keller. And my experience is as a deafblind woman. And I had some other deafblind people be really angry because they thought I was speaking for them. There was like, but I, but I explicitly say that it is my experience and not yours, but you have to speak to that every time.

[00:04:50] Sam: Yes, absolutely. And sometimes because we do this professionally, I found, for example, as a moderator on Reddit, when you have a bit of power, people get really nervous. Great Radiolab episode, by the way, We should absolutely link it in the show notes.

[00:05:08] Nikki Nolan: We will link it. We will link it a hundred percent. It was fantastic. It was so good.

[00:05:13] Sam: You said you started out doing your work as a historian so was it just like, oh, I have to do two jobs and that’s why you’re now kind of in accessibility professionally? Or do you find that there is sort of like a direct connection and a direct pathway between your historical work and getting into accessibility?

[00:05:38] Elsa: Well, my master’s degree from Sarah Lawrence is in Burlesque and Obscenity Law, which maybe doesn’t sound like it has any connection to accessibility work. But 90% of the work that I was doing was understanding how our bodies are connected to the law.

[00:05:53] Sam: Okay.

[00:05:54] Elsa: And accessibility law is connected to having disabled buddies exist in our legal structure.

[00:06:00] And so as I started to understand more about how accessibility laws are built and how compliance is built, I got really fascinated using that structure of my historical background into the hows and whys of what we say about disability. So I would say that even though I no longer use my master’s degree for what it was originally intended, which was teaching history at the graduate level, I think that I’m still using the skills and the knowledge because learning how legal thinking works is a huge component of how accessibility functions.

[00:06:37] Sam: So how does that kind of research that you did into obscenity and burlesque laws inform, for example, how you think about things like the web content accessibility guidelines or the ADA?

[00:06:50] Elsa: The laws that were written in the 1930s to suppress women’s freedom of speech when it came to using their bodies for art forms are not too dissimilar from what we say you can and can’t with your body. It’s all about what you can and can’t do with your body. Who owns your body.

[00:07:08] Right. I can port a lot of that, same thinking over to the future, thinking about who owns your adaptive aids. Like, if we start patenting hearing aid implants, we start patenting those kinds of things that map over to the same issues.

[00:07:21] Sam: Yeah, I think we can both see a future where they need more updates and a yearly subscription. Right?

[00:07:27] Elsa: Well, it even happened. There was an article a couple of weeks ago about a woman who had a bionic eye and they stopped supporting the software. And so her eye turned off in the middle of her commute.

[00:07:38] Yes.

[00:07:39] Sam: I didn’t see that.

[00:07:41] Elsa: It was horrifying. I will, I posted a Tik Tok about it and I’m going to pull up the link so I can send it to you.

[00:07:48] Nikki Nolan: And we’ll post that in the show notes. Oh my gosh. That is so wild.

[00:07:51] Not only did that Radiolab episode make me think of you. We also talked about you in episode three because you did this ableism in the workplace for the company that I work for. I’m really fascinated. Like you dissected what ableism is and not everybody understands what ableism is. Can you give people a very high level explanation of what ableism is?

Elsa: Sure. So in my book Being Seen, I describe ableism as a radioactive force. And the reason why I do that is because of something you can’t see. You can’t touch it, but it’s there and it’s pervasive and it’s something that’s built into our society. Ableism is the thing that makes you use phrases like blind to their faults or falling on deaf ears, which are both pejorative phrases that make it sound like blind people or deaf people are deliberately ignoring people or choosing to be ignorant or are always going to be ignorant.

[00:08:50] That’s not true. And ableism is the thing that causes people to shrug their shoulders and say, well, we don’t really need a ramp because no wheelchair person will ever actually come in here. Because they assume that disabled people don’t live in society. They live in institutions or with their families.

[00:09:08] Ableism is the thing that makes you a non-disabled person afraid of acquiring a disability because you assume that it’s an inferior way to live. These assumptions are baked into our societal models and so ableism is everywhere. You just have to know how to look for it.

[00:09:24] Sam: Do you think, I’ve had debates about this with people and they’re always very interesting. Do you think there is a greater systemic component to ableism than there is to racism?

[00:09:39] Elsa: I actually don’t like to compare that. And the reason why is one, because black people have asked us not to. I’ve seen a lot of people say please don’t equate them because they’re different experiences. And we shouldn’t try to conflate them in addition, because intersectional experiences are going to change that. If you’re a black blind person, your experience of ableism is also going to be informed by the racism you experience. So we try to keep them separate and not sort of equate the two as the same thing. But I do think that they are both massive systemic forces and I wouldn’t call one or the other greater.

[00:10:19] Because I think anything that is this societaly baked in is going to cause issues for everyone, regardless of how big or small. It’s going to be just as pervasive.

[00:10:32] Sam: Yeah, I absolutely agree. The thing I think I was trying to get at is sort of the different components that make them up. I absolutely agree that comparing them is sometimes not helpful. I also don’t want to give up the opportunity to learn. I think some portions of diversity and inclusion are ahead of us in the disability community.

[00:11:00] And I think there are things that we can learn from them. And I worry that we missed that opportunity.

[00:11:06] Elsa: That’s fair. I mean, I will speak to one thing that links two, which I think is actually important and that’s white supremacy. Because white supremacy is built on concepts that say that there is a specific kind of body that is the right kind of body and is a good body. White supremacy has been in, has enabled eugenics, which is a massive discrimination against the disabled community.

[00:11:30] Eugenics is used to erase and eradicate disabled people. It’s also used to erase and eradicate people of color. So white supremacy is inherently linked in both of these isms in a way that I think means they are just as big as the other and inextricably intertwined.

[00:11:50] Sam: Yeah. I’ve also heard some really great thinkers draw to the fact that both of those things are either enabled or encouraged or fueled by capitalism and the best body is the productive body.

[00:12:04] Elsa: Correct. And that’s something that we can link back to the industrial revolution position. You’re really pulling on my historian and social history.

[00:12:16] But you’re right. Like capitalism, 100% is backing what we put money into. And one of the things that I talk about a lot in my role as a disability consultant is reminding people that disabled people aren’t a small minority. The disability actually makes up a large chunk of the population. And when we don’t put money behind accessibility measures, what we’re basically saying is that disabled customers don’t exist.

[00:12:44] Sam: Yeah. Absolutely. So for people listening to this podcast who may have, or may be hearing these ideas for the first time? Obviously, I don’t think that tearing down capitalism is necessarily the answer to ableism. So what is sort of the thing, the takeaway, what should we be doing to move the needle?

[00:13:08] Elsa: Actually you’re right. Capitalism being destroyed doesn’t help disabled people. Because a lot of the innovations that we get from capitalism are inherently helpful to disabled people. You know, those late night ads that you see where you’re like, that’s a ridiculous object. Those ridiculous objects are often disability hacks. Jar openers help, it’s a disability hack.

[00:13:33] So capitalism does actually fuel innovation when it comes to ease of access for people. And I don’t want to take that away. But I do think that we need to think of disabled functionally members of society. And that’s what you’re taught to forget. And so if you’re working in tech and you think that a disabled person isn’t going to use your product, you’re wrong.

[00:13:57] Disabled people are a part of the capitalist system that we’re working inside of. And you need to treat us like we are actually members of that society. So bringing disability into your thinking when it comes to product development or design is actually a key part of taking apart ableism when it comes to living in the capitalist structure we’re in.

[00:14:17] Sam: Yeah. Absolutely. Before we move on out of this rabbit hole that I’ve taken us down, but it is fascinating. Last thing I want to ask is I have heard multiple people in the disability community who live with disabilities tell me that we’re all being too sensitive and phrasing doesn’t matter. And ableism isn’t a thing.

[00:14:40] So what do we, as advocates, need to be doing as a sort of consciousness raising in our own communities?

[00:14:49] Elsa: Well, to people who don’t think ableism exists, I’m just going to point out that I have a bachelor’s degree, a master’s degree, 12 years of professional experience as a freelance worker, and it took me 11 and a half years to get a day job. I’m a highly qualified individual with very good skills and also the ability to talk my way out of a rabbit hole, but it took 11 and a half years.

[00:15:14] If you don’t believe that ableism was involved in my job hunt, you are wrong.

[00:15:20] Nikki Nolan: Yeah. Ableism is so pervasive. How has it impacted you? It impacts you in your ability to get a job, but I bet there’s other things that have happened, that point back to this ableism as being an actual object.

[00:15:34] Elsa: I mean, ableism has affected me every day of my life. There’s no literally a piece of my life that has not in some way been impacted by ableism. I was educated in mainstream schools where the only accommodation that I had was sitting in the front of my classroom, and everybody just sort of said, this is enough.

[00:15:55] And the truth is I never felt safe enough to say, I can’t even read the white board because I knew that that was admitting a weakness. I was in PE class and they would try to teach me how to throw a ball. I don’t have depth perception. And I knew that just opting out would instantly get me made fun of by my classmates, because I knew that they would pick on my disability.

[00:16:17] Because fundamentally kids picking on other kids happens. Kids picking on other kids because of differences that they can’t change is part of that bigger social structure that feeds on things like ableism, racism, antisemitism. These are all things kids are communicated to by their parents. So there literally hasn’t been a day in my life that ableism has not somehow impacted me.

[00:16:45] People come up to me in the street and say, you’re not really blind when I’m holding a white cane, because I have my phone in my other hand, like-

[00:16:51] Nikki Nolan: Wow.

[00:16:53] Sam: Oh, that’s happened to me too.

[00:16:55] Elsa: High five.

[00:16:58] Sam: Yeah. You know, one thing that I do wonder is after everything we have been through in the past couple of years, the pandemics and so on, we are having a mental health crisis in North America in that there are not enough resources and there are people struggling with these challenges for the first time.

[00:17:24] Do you think that will help us as a society get beyond the shame and the expectation to stay silent? Or do you think that in four years, it’s all going to go back to the way it’s always been.

[00:17:37] Elsa: I don’t feel super optimistic right now because right now, mass mandates are being dropped and school systems are emailing families and saying, well, if you’re a medically fragile family, let us know, and we will continue to contact tracing for you. But then they don’t tell you how to actually sign up for contact tracing.

[00:17:59] And everybody’s just going back to events in person without considering how to do hybrid formats. So I think that there’s going to be a second crash of mental health. I really, really wish that this wasn’t the case, but we’re leaving a lot of people behind who have already, who have experienced being left behind before.

[00:18:17] And who now, whenever everything was online, were able to participate for the first time maybe ever. So the reality is we need to make a shift in how we approach events. We need to make a shift in how we approach caring for our immunocompromised community members to actually care. In order to avert a potential mental health crisis again.

[00:18:39] Nikki Nolan: That makes a lot of sense. And it’s just so frustrating. Like the pandemic made us be able to push forward so fastly. Like, oh look, we could actually do things remotely. Oh look, we could do these things that, you know, the disabled community has been asking for all of a sudden it was like there.

[00:18:57] And the fact that they’re rolling those things back and going back to the old way of working is just… I just took a really long pause. Cause I don’t even have the words for how frustrating it is to see that something was possible. And for them to be like, ugh, and we don’t care anymore.

[00:19:16] Elsa: The other thing that I will say is, remote work companies need to continue being flexible. Because what I see as an opportunity for disabled people to be more in the workforce and they have been in the past, and I don’t want us to lose that opportunity. And I’m concerned that by pushing straight back to non remote, by having everybody in offices again, we’re going to lose that opportunity.

[00:19:39] Nikki Nolan: It’s time to take a little break and listen to some words from our sponsor.

[00:19:44] Hi, I’m Lynette. I’m the Community Manager at Fable. I’m also a full-time screen reader user. And before becoming the Community Manager, I started out as a member of our community of accessibility testers. Now I help build and support the community of assistive technology users that powers everything we do here at Fable.

[00:20:02] If you’re listening to this podcast, you probably know just how important it is to integrate the voices of people with disabilities into every aspect of your accessibility journey.

[00:20:13] Fable could help you do that. From improving your team’s accessibility training with Fable Up-skill to working directly with assistive technology users, with Fable Engage, we can help you take the next step on your accessibility journey. To learn more, please check out our website@makeitfable.com.

[00:20:33] Nikki Nolan: Let’s get back into this.

[00:20:35] I want to shift this conversation a little bit to what are some myths around disability that you would like to bust?

[00:20:41] Elsa: I’ll start with one that we’ve been hinting at, which is that not all blind people are completely blind. Not all deaf people are completely deaf. These are on spectrums. and frankly they’ve always been on spectrums. And the fact that we assume that the single binary sort of case studies is the problem, because it doesn’t let us innovate.

[00:21:05] And it doesn’t recognize people where they are. We also need to recognize that people can have more than one disability at the same time. I know that that sounds shocking and challenging, but it’s true. I have three. So asking people to recognize that there can be the multiplicity of experience really matters.

[00:21:24] Sam: Absolutely. As someone who is a completely blind screen reader user, I often do feel that I have a privilege that my partially sighted coworkers and colleagues and friends don’t get.

[00:21:38] Nikki Nolan: Explain.

[00:21:39] Elsa: Everybody wants to service your needs because yours is the only blind experience they actually know about. But I literally have had to say to websites. I can’t read your website because you’re using a gray font on a white background. I’m deaf. So the screen reader’s voice isn’t actually understandable for me.

[00:22:02] So I need you to fix it.

[00:22:04] Nikki Nolan: Ooh. So, what’s really fascinating to me is that I have noticed, like working in tech, this over per valence of screen readers for accessibility. Where people over index on, on let’s do this for screen reader compliance because that is the group of people that we are excluding the most.

[00:22:24] And then this other huge assumption on top of it, that people who use screen readers are blind and a hundred percent blind. And how do we break that? Because I am actually having that conversation right now with some people. And I’m like, well, when you just focus on a specific subsection, that is a specific subsection of a spectrum, like you leave people out.

[00:22:45] Elsa: So in 2015, according to the NCIB, NIH studies, there were an estimated 253 million people with visual impairments worldwide. Of those, 36 million of them were fully blind. And the 217, 218 million were moderate to severe.

[00:23:06] Basically that’s not a big chunk. But the fact is because, and this is my wheelhouse, the media has always portrayed blind people as completely blind. That is the assumption that everybody runs with. This is what my brain has seen as a fully blind person, so therefore, I’m going to assume all blind people look like Mr. Magoo.

[00:23:30] Sam: So to pull on your historical knowledge a bit, do you think this is related to the way that early advocacy for the blind and the visually impaired was so dependent on veterans coming back from World War One and World War II, due to their injuries probably being completely blind. Right? If you look at library services, if you look at support services, if you look at goalball, all of these things were invented for vets.

[00:24:04] Elsa: I mean, it’s that and it’s Helen Keller. Like that’s pretty much what we have. And so more or less what I think the problem is, is that because those services were built for specific experiences, we never innovated. And that’s partially because we didn’t have the money. I mean, the services that exist, we’re making money for people who were experiencing extreme, tragic loss, which also feeds into the whole being disabled as a tragedy truck.

[00:24:32] Well, we haven’t really talked about people who were younger who acquired blindness because you know, like me, I’m a congenital rubella syndrome baby. I’ve always been blind. And those services didn’t exist as much. It’s also to me, partially based on the fact that we segregated people because we had schools for the blind and schools for the deaf.

[00:24:54] And if you sort of shunt an entire population off into its own little niche, you stop being able to visualize what their experience is like.

[00:25:03] Sam: Absolutely. I don’t know if you’ve had this experience, but I’ve had a thing where I’m signing up for some service and the assumption is literally that I’m a United States veteran. And I have to specifically contact them and be like, I can’t fill out these fields on your form cause I’m not that. And they’re like, oh, well, yeah, you can have an exemption. We intend it for all blind people. We just assume.

[00:25:24] Elsa: I had that experience mostly because of the amount of work that I get and I haven’t had a lot of state service support. When I lived in one specific state, they told me that my freelance or income was too much money to receive services.

[00:25:41] Nikki Nolan: It’s so ridiculous. Like we won’t go down that hole of like forcing people who have disabilities into poverty and how we don’t have marriage equality and all of these things, but-

[00:25:53] Elsa: Down the rabbit hole, but if you’re listening to this episode, you should go do some research because it’s all true.

[00:25:59] Nikki Nolan: What is something that you have solved or something that you were incredibly proud of?

[00:26:05] Elsa: Well, I’m going to talk a little bit about my experience because my experience has been primarily in science fiction and writing. And I’m really, really proud of the fact that I actually won the Hugo in 2021 for Best Fan Writer. And the work that I did for that was all about disability. And it was about what it’s like to be existing in a world, during the pandemic where you were deafblind. And how that informed the way that I experienced the media, that I was consuming, how it informs the way that I experienced the protests that happened in 2020. And that work, that body of work, formed by my experience as a deafblind woman. And it did actually change the way that people understood the world in 2020. So that award meant a lot to me because I made an impact on the way that people experienced what’s been happening in the last two years.

[00:26:59] Nikki Nolan: That’s amazing. And yes, I also wanted to highlight that you are a very accomplished writer and you have a book potentially that you hinted at on Radiolab that you’re writing up. That’s a horror novel.

[00:27:11] Elsa: Yeah, it’s very much a back-burner project, but I am writing a horror novel that is based on the beats of the Miracle Worker.

[00:27:18] Sam: We need more, disabled genre writers. As a reader and participant in the science fiction community, the way that inclusion and or exclusion has been politicized recently, is not great. And doesn’t make me happy. but we don’t need to go down that rabbit hole, unless you would like to.

[00:27:42] Nikki Nolan: I love this rabbit hole. Cause I feel like both of you love science fiction. I am not an aficionado so Rebecca Coakley was just on Hysteria and she was talking about-

[00:27:53] Elsa: Rebecca is amazing. I love her.

[00:27:58] Nikki Nolan: How we’ll know we made it when we have like a romcom Christmas special with two disabled people that is not about their disability. I’d love this space, even though this isn’t something we’ve talked about on this podcast as a representation in the media. And both of you love this sort of science fiction. I’m cool to go down this rabbit hole. If you all want to talk a little bit about it.

[00:28:20] Elsa: Well, I’m going to actually sort of connect it to what we’re talking about. Sort of broad spectrum, because honestly there are a lot of nerds in tech, right? I can tell you that my company has nicknames for all of the teams. And it includes things like prime directive. So there were a whole lot of nerds in the spaces that we work for and nerds read science fiction and they watch science fiction.

[00:28:46] And tech is about building our future. Science fiction is about imagining our future. If our science fiction does not include disabled people and erases us from the future, we’re not informing tech people of what we want to see in the future. So our science fiction needs to be inclusive. Needs to be accessible.

[00:29:05] It needs to show people of color, disabled people, Jews, women, Muslims. It needs to be broad and diverse because otherwise we won’t be there because the people who are building our tech, won’t be thinking about us.

[00:29:19] Sam: And right now, even when we are there, it is so focused on either the cure for whatever it is or there’s some bio implant or some technology that basically takes away all the facts of the disability. Right? How do we balance wanting to fairly represent disability without sort of making more of it than should be made?

[00:29:44] Elsa: I think some of it is about just having disabled people in your stories. Like it doesn’t have to be a disabled centric story, but why isn’t there a character on Star Trek Discovery who has a speaking role, who is a wheelchair user? But I saw a wheelchair user in the background on Discovery, but what if they were speaking role characters?

[00:30:05] What if their role was not about disability, but just about being on the ship?

[00:30:09] Sam: But I mean, there was the Forage in the Next Generation, right?

[00:30:15] That never came up.

[00:30:16] Elsa: Well, I didn’t come up because he had a visor. See, this is one of those tech cures. Geordie’s tech erased his disability. The idea is that you build a disability world without erasing it using tech. And I think that that’s the tricky bed. The Miles Vorkosigan is really good. It does a really good job of that by Lois McMaster Bujold.

[00:30:36] Sam: Why isn’t that a Netflix series yet?

[00:30:38] Elsa: I know. Right. I wanted so badly. Please cast Peter Dinklage.

[00:30:50] Nikki Nolan: What you’re talking about is a lot of things that other communities also experience. Like how can you actually have representation where it’s always about the trauma?

[00:31:01] Elsa: Yeah.

[00:31:02] Nikki Nolan: It’s not about the actual experience. And we do lack representation, not only in the media, but also on the backend, the writers, we need disabled writers. We need people who have these lived experiences. I’m preaching a soapbox right now.

[00:31:15] Elsa: I am right there with you.

[00:31:18] Sam: Even when we do that poorly, it moves things forward. We can argue about the representation of blindness in Daredevil all day, but Daredevil debuted without audio description. And it got the public push that Netflix needed to finally become one of the world leaders in audio description.

[00:31:40] Nikki Nolan: Wow. Yeah.

[00:31:41] Elsa: I believe I was the first blind person to get to write Daredevil.

[00:31:45] Sam: I did not know. What episode?

[00:31:47] Elsa: I haven’t, I haven’t written for the show. I wrote Daredevil as part of Jessica Jones: Playing with Fire, which was an audio drama with Realm.

[00:31:55] Sam: Oh, that’s why. Okay. Well, I will look that up too. This is the podcast where we promote other podcasts that you should all immediately go listen to.

[00:32:05] Elsa: Oops.

[00:32:07] Nikki Nolan: No, no, no, it’s great. I think that this is like pulling and connecting on so many things.

[00:32:12] Elsa: Well, yeah, I think if you’re listening to this podcast and you work in tech, one of your responsibilities is to think about who you’re envisioning in the future, not just, who’s who your intended audience for a product is. But also who’s going to be there when you do the next generation of this?

[00:32:28] And I bring that up because I’ve seen designs for driverless cars. Right? Now I’m blind person who would do things for a driverless car. I would like one now. But there are other populations that could use driverless cars, like people who are paralyzed and can’t operate one with their feet. Or maybe they’re completely paralyzed from the neck down and they can’t operate a car with their hands.

[00:32:53] But the driverless car models that I’ve seen don’t have a ramp or a lift to get your wheelchair into the car, which doesn’t make any sense. If you’re thinking broadly about who might need this device, you’re only thinking about the able-bodied people who might.

[00:33:09] And so that’s the kind of thinking that I think people need to be doing.

[00:33:13] Sam: Although with the driverless cars, Jutta Treviranus does great work with this. We talk about some of the flaws in machine learning models of driverless cars. Maybe you don’t, I don’t know how you feel about it, but I feel a lot of tension between advocating for myself. I really don’t want a driverless car when it might make pedestrians who use wheelchairs or crutches less safe.

[00:33:42] How do we, how do we balance those tensions? Do you feel that?

[00:33:46] Elsa: I do. That was actually the next example I was going to bring up because the morality machine project through MIT didn’t have disabled bodies in the options for how you program a driverless car to know what to, or not to hit. When it made trolley problems calculations. So yeah, it’s a big deal and I don’t quite know how to square it, but I think that we need to start processing how, because eventually we are going to be driverless cars.

[00:34:15] It’s not something that we can escape, I think long-term, especially because it is such an equalizing force for transportation.

[00:34:22] Sam: I mean, we have that same tension with online voting and electronic voting. Right? It’s so much more accessible for us, but maybe it’s not the best thing for democracy. I’m not sure.

[00:34:36] Nikki Nolan: Oh boy.

[00:34:38] Elsa: Yeah. I feel that one a lot more because I feel like online voting is so easily manipulated and we live in a society where people can’t be trusted to potentially have that power. And I don’t know how to square it, but I do know that that’s a big issue. I mean, I also feel that tension in physical ways when we talk about having guide dogs and the difference between what you do when someone has an allergy to a dog or who’s afraid of dogs.

[00:35:04] Nikki Nolan: This has been a really cool rabbit hole. I really appreciate it. What do you feel is your biggest frustration in your career and is it still happening?

[00:35:11] Elsa: I think my biggest frustration is getting people to care. I have to convince people that they’re going to lose money. I have to convince people that disabled customers matter. And I really wished that we could all just be on the same page that accessibility matters and not just because you might lose money, not just because you might lose a customer, because it’s the right thing to do.

[00:35:34] The ADA has been around since 1990. My big frustration is that I don’t feel like people care enough and it feels like this big hurdle to get people to give a fuck. There’s no other way to put it.

Nikki Nolan: Totally. That’s incredibly frustrating. So we’re coming close to the end and we like to end our show with talking about what the first piece of technology you remember using it is. And was it for?

[00:36:04] Elsa: I think it might be, might’ve been my Game Boy. So when I was a kid, one of the things that my ophthalmologist had me do to strengthen my visual spatial skills and strengthen my hand coordination was to play Mario. Because you have one eye and it doesn’t track super well, you have to train your brain to do that tracking. And so I played Mario basically to do the work of learning how to see.

[00:36:35] I did that on my Game Boy color and I did that on my Nintendo. And that was the technology that I have the strongest memory of, I guess. I don’t know if it was the first piece of tech that I touched, but it was definitely the most important one.

[00:36:50] Sam: And maybe it connects us a little bit to something that is a frustration we probably share. There’s this idea that well, employment isn’t as accessible as it should be and travel isn’t accessible as it should be. And you want to spend time making games accessible. Right? It’s something that we hear a lot.

[00:37:07] How did you respond to that when you did hear it?

[00:37:09] Elsa: Disabled people deserve leisure time. And if you were taking leisure time away from disabled people, you are basically reinforcing the notion that disabled bodies are useless. And the only thing that you can do, the only way that you earn leisure is by having a useful body. This is a soapbox that I crawl onto a lot you can tell, yeah, it looks utilitarianism doesn’t work. It’s not an okay way to approach accessibility. Hearing aids should be pretty. Games should be accessible. Canes should be pretty. You should be able to get a pink wheelchair without it costing you $60,000. Like we deserve to have fun and we deserve pretty things.

[00:37:51] And those two things feel very intertwined for me.

[00:37:54] Nikki Nolan: Is there anything that we didn’t ask that you want to specifically talk about?

[00:37:58] Elsa: Well, I’m going to tell you my favorite thing that I got recently, that’s an accessibility tool that relates back to what was asked. I got a new XBox controller. Because you can now customize your XBox controllers and it costs the same as the regular XBox controller. It just takes a little bit more time to get to you.

[00:38:19] So I now have a high contrast pink and teal XBox controller that I can see well enough. And it’s easy for me to play with. I’ve never had a video game controller that worked for me like this, and it’s pretty and it’s fun. And it’s an accessibility tool. And the fact that this is available to people really matters.

[00:38:41] Microsoft’s choice to make that available really does matter to me because it’s an accessibility tool and they don’t even talk about it as though it’s accessibility. They just say, you can make a custom controller.

[00:38:53] Sam: You’ve talked a little bit about your work and your winning of Hugo and your podcast on Radiolab. But, two things. First of all, if folks want to keep in touch with you and keep up with what you’re doing and maybe continue this conversation, where can they find you? And second of all, is there anything you’d like to plug?

[00:39:12] The first thing I’ll do is my plugs, which is that you can buy my book Being Seen: One Deafblind Woman’s Fight to End Ableism at bookstores everywhere. It’s also on audio book. So you’ll be able to read it or listen to it depending on your accessibility needs. You can also get signed copies through Elliot Bay books in Seattle, Washington.

[00:39:30] You can find me as Snark Bat, S-N-A-R-K-B-A-T. Everywhere on the internet. Yes, it’s a joke. And, you can find me on LinkedIn as Elsa Sjunneson. I talk about this stuff all the time. Feel free to jump into the Twitter conversation. Feel free to comment on my LinkedIn posts. I’m around.

[00:39:49] Sam: Absolutely.

[00:39:50] Nikki Nolan: Thank you so much for being here. This was so energizing for me.

[00:39:54] Elsa: Well, thanks for having me.

[00:39:55] Nikki Nolan: Thanks for listening to Disability Bandwidth. If you liked this episode of Disability Bandwidth, please subscribe and share it with friends and family. Today’s episode was hosted by Sam Proulx and Nikki Nolan. Edited and produced by Nikki Nolan.

Transcripts are written by Emma Klauber. Feed music is created by Efe Akmen.

[00:40:12] Special thanks to everyone at Fable who without their support. This show would not be possible.

You can find out more about Disability Bandwidth on Twitter, @disability_band and Instagram, @disabilitybandwidth, or on our website https://disabilitybandwidth.com/.

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