Changing the Disability Design Narrative
Ep. #25: This week we’re talking about designing with disability, rather than for disability, with my guest Liz Jackson. Liz is a disability advocate who is trying to shift the disability narrative. We talked about how the way we currently approach disability in design can actually cause more problems that solutions for people with disabilities, and how language - phrases we commonly use in design, like accessibility and inclusion, and even design thinking methodology - makes disabled people the recipients, rather than the drivers, of design. And what a product or design team can do to get the perspectives they need and make sure that disabled people are treated as the experts in disability.
TRANSCRIPT
>> Leigh: Thanks Liz, for joining me today on UX Cake. I'm really excited to talk to you.
>> Liz: Thanks so much for having me. I'm really excited to speak with you as well.
>> Leigh: So, before we dive into our topic today, I would love to share a little bit of your background with our audience. I think it's your journey is an important part of this topic. So, you're a disability design advocate, but you didn't come into advocacy from a design background.
So, tell us a little bit more -- tell us what led you to being an advocate for disability in the design space. Why design?
>> Liz: It's interesting. My back ground is in television production. And so, I had never really thought much about design, nor had I thought about disability until I sort of encountered it.
I woke up in March of 2012 to a new body. When I got out of the hospital, I needed eyeglasses and a cane and for me I had this immediate question of, why do I have so much choice with my eyeglasses when I don't with my cane? And that question. I couldn't let it go and I see now how it's become my life's purpose. And it's funny what a simple question can do. It can change everything.
>> Leigh: And, what was it that drew you to design? So, I mean, I think you can tell it better, but I think you started with fashion design, right? You had more options for your eyeglasses than a cane.
>> Liz: It’s so interesting because I feel like there's this sort of time in my life that doesn't necessarily apply like it did. And I would say it was between really 2012 and 2015.
So, what happened was is I -- I found a beautiful purple cane like eight months after I first started needing one. And it changed everything. And at the time I had been watching "The Girl with the Dragon Tattoo" movies, so, I decided I wanted to have the badass super hero alter ego, and so I made myself into the girl with the purple cane.
And I used the blog to harass my favorite company at the time, J. Crew. Because I felt that they sold eyeglasses, and so, I felt selling canes was a natural progression. And I was never able to convince them. But through this process of trying to convince them a few things happened. The first was is that I started to really understand what disability in design really means. But the other thing is I encountered and have started a friendship with the woman who designed my cane.
And it's through her that I really shifted away from fashion and started to delve into design processes. And the rigor of design and the implications of design and how we go about designing and really starting to be a student of design without actually having a formal education.
And so, I think my purple cane has become this sort of cornerstone, both of my life and of the work that I'm doing.
>> Leigh: That's really fascinating. Tell me a little bit more about that -- the woman that you met. And is she a product designer? Tell me a little bit more about that.
>> Liz: Yeah, she's an incredible human being. So, her name is Rie Norregaard. And she is -- she's based right now at SYPartners. And what can I tell you about Rie? Sort of a Danish Geppetto. Does a little bit of everything. She -- I don't know if you know OXO kitchen products, but she created the OXO logo. She -- just does so many different things that you would sort of never thought about, oh, well, who designed this? And she's fascinating. I think she's one of the few people who feels comfortable enough with me to kind of push back on some of my more stringent advocacy beliefs. And so, I've grown to trust her implicitly.
>> Leigh: Oh, those are fantastic people to have around you.
>> Liz: Yeah. It's funny. Like, I have my partner at the Disabled List, his name is Josh Halstead. And I had caused some sort of contention in my life and Rie reached out and said, that she wanted to talk to me. And I told him, I'm scared that ‘mommy is going to yell at me.’ And she didn't, but like, you know, she definitely was -- she was stern with me. But she's so smart, you know? And she gets it. And there's times with her where she doesn't agree with me and then she'll come back six months, a year later and say I now understand what you were saying and I'm very proud of you for sticking with your guns.
And so, it's a relationship with a lot of give and take.
>> Leigh: So, diving into disability design. Just to kind of start with. This is maybe phrase that people listening haven't heard before. You distinguish between design for disability versus disability design. So, tell me a little bit about that.
>> Liz: So, I started out advocating for product, right? That was my goal. I wanted choice with my cane. And what happened over the course of the last six years is I actually shifted from wanting choice in my cane to really focusing on the people who are involved in design and “who gets to design?” And what I started to see was, if you Google the phrase "Design for disability," you'll see that it yields more than twice as many search results as disability design, right? And so, this idea that we are recipients of design has embedded itself into -- into our language.
But also what the last six years have taught me is that disabled people, we are the original life hackers, right? Our innovative solutions have changed the world, right? Like, we created the Internet, we created the bicycle, we created the iPhone touch screen, we created audio books and curb cuts. And, you know, just item after item. And, you know, I think that it just demonstrates the value of really existing on the margins.
And so, for me, how do we start to incorporate disabled people in design processes rather than seeing disabled people as being a subgroup as in need of design intervention.
>> Leigh: So I’ve seen 2 themes in advocacy, and in yours as well, your groups that you’ve founded are very much about getting disabled people a seat at the table. Then there’s also this other issue though, making sure that the people who are making products and services are thinking about design accessible to all, inclusive to all is another phrase we’re talking about quite a lot, so that definitely applies to people with disabilities, are you advocating on both those themes, do you see them as the same?
>> Liz: It's, you know, I think -- I was talking to somebody about this where I set out to do something such as mainstream products, right? Like, I wanted to mainstream something as simple as choice. I wanted to do so through large corporations and through brands that we all know the name of. And what I'm finding increasingly is that where I find the things that I feel comfortable with and agree with in sort of, you know, random techs. And like small corners of the world.
And so, it's fascinating. Because I started out wanting to impact large organizations. And now I find increasingly I'm very focused on language. And so, there's sort of -- there's, you know, three different things that I heard you say in the phrase -- in your question to me, the first was accessibility. The second was, is design for all, and the third was inclusivity. And so, for me I have become in my work really focused on like what do those phrases mean?
Because I think that understanding the languages that we're speaking is the only way that we can enact the more mainstream change that I've long advocated for. So, say we start with inclusivity. I actually don't use words like "Inclusion" and "Diversity" in my work for a variety of reasons. There's this variety of euphemisms that we use to talk around disability. There's, you know, we can use "Inclusion," or" Inclusive design" or "Accessible design" or, you know," Differently abled" or "Special needs," and people are so uncomfortable with the word "Disability" that they try to find ways to talk around it. But what they don't realize is that by talking around the word "Disability," you're actually increasing the stigma of an identity that we are trying to own and that we feel incredibly proud of.
I actually don't use words like "Inclusion" and "Diversity" in my work for a variety of reasons. There's this variety of euphemisms that we use to talk around disability. There's, you know, we can use "Inclusion," or" Inclusive design" or "Accessible design" or, you know," Differently abled" or "Special needs," and people are so uncomfortable with the word "Disability" that they try to find ways to talk around it. But what they don't realize is that by talking around the word "Disability," you're actually increasing the stigma of an identity that we are trying to own and that we feel incredibly proud of.
My friend Lawrence Carter-Long created something called the #SayTheWord campaign just to get people to say the word "Disability." And so, this is why I use a phrase like" Disability design," right? Because first of all, I'm trying to say, we're not recipients, we're drivers of design. But also I'm trying to say it's us, that disabled people are, you know, participating in the process. It's not necessarily, for us
So, that's one word. The other word used is "Accessibility." And I think people are increasingly of the belief that if we're talking about disability there's only really one aspect that we need to talk about in design and that is access. Physical access. But the thing is, is what my interest in all of this is, is I believe we need to teach disability studies alongside accessibility curriculum in design schools. People don't know the how with the why. They don't understand the implications of the access they're creating. But also accessibility again sort of means for us, right?
Like, you could design all the ramps in the world to get somebody in the room, but how are you gonna to get them a voice at the table, right? How are we going to amplify their perspectives? Accessibility doesn't do that, but disability studies does.
And then the last was this idea of design for all. And this, I guess, harks back to Aimi Hamraie, who is a design researcher. She wrote a book called "Building Access." And what she has done is gone back and really looked at what does design for all mean? And what she realizes is that it actually, it doesn't mean all people, it only means certain people. Design for all is the -- is a theme and an outcome of barrier-free design. But it also happened when the United States was still segregated. And so, design for all only meant white middle class people who were able to access public spaces.
>> Leigh: Do you mean -- you mean the origin of that phrase? Or as opposed to how it's used today?
>> Liz: Well, it's interesting because I don't think we've reckoned with it, right? And so, when we say "Design for all," we are saying that -- we don't ever actually mean all. And I think this is sort of another aspect of accessibility that we can look at. Like when -- there are power politics in accessibility. When you make something more accessible for one person, you're innately going to make it less accessible for the next, right? So, we could look at an accessible stall, right? You make it higher up for a wheelchair user so that they can shift over to the toilet. But it then becomes less accessible for a little person who now has to deal with the raised toilet.
>> Leigh: Well, can I ask you another question? Like, specifically about what you were just talking about -- these are catch phrases. And there's no way to say all and actually mean every single person, right?
>> Liz: Yes.
>> Leigh: And I totally understand bringing people with disabilities -- designers -- with disabilities into our teams and how important that is. But disability is, it's one big community, possibly. But when we're talking about designing products or services, it seems important to separate out different disabilities since each disability is going to bring its own unique perspective. So, how to we approach different disabilities when we're talking about designing products and services?
>> Liz: I think this is the question that we're all asking, right? And many struggle with it is, is we always sort of bend toward universality. But the thing that I see is that -- so, if you look at the history of disability, what you'll find is that it -- disability didn't exist before industrialization.
So, you would have a blind person, you would have a deaf person, you would have me, right? A cane user. And we would be existing in our communities, contributing as we could. And we were fine. I'm not saying everything was great. But we weren't grouped together as this thing called "Disability."
And then what happened was that industrialization rolled around and it created this expectation that bodies could perform in rote and mechanized ways. And suddenly there was this subset of bodies that couldn't perform. And so, industry at the time turned to doctors and philosophers to diagnose, or to determine which bodies they were. And they diagnosed those bodies medically as disabled. Those bodies were then segregated and institutionalized. And that's really how disability started.
And so, what I look at is I see how the very thing that created disability in the first place, which is this idea of universality through industrialization, when we finally decide we're going to try and intervene through design and we do so through something like universal design, we're applying the very same thing that created to -- created us in the first place to the solution. And we're only reifying the problem. There's no such thing at universal. That's why disability exists.
And yet we're looking for universal solutions.
>> Leigh: So, to that point, let's say we've got a team that actually would like to hire a designer with a disability into our team so that we can be designing with, not designing for, right? Does one person with one disability, does that cover all disabilities? How do we rectify that?
>> Liz: Yeah, well, I think this comes down to sort of how does my organization position itself in the marketplace? And I think also embedded within your question is how do we know what the right disabled person is? Right? And how do we know that we're getting the right perspective?
And so, for me, I really look to do two things. The first is, is that I don't, you know, I -- it's hard to hire a disabled person and then just sort of implant them into an existing system when it's likely the very system that was created that it has excluded them in the first place. I can think of my friend, Cindy Bennett is a design researcher. She's blind.
A lot of design processes include Post-it Notes, well, that's completely inaccessible to her, right? So, if you think about that on a large scale and every sort of aspect of how we go through a typical design process. And so, I’m more interested in inserting a disabled person into a design space. And not necessarily putting them to work, right? But rather letting them exist in the space so that they can sort of feel their way around and what I believe is, is by not sort of forcing somebody to conform to your way of doing things, they will innately shift how everything is done.
So, there's that element to it. The other is, how do you find the right disabled person?
How do we make sure that, you know, we're designing for enough disabled people? But for me, the thing that I'm really interested in is, is how do we insert somebody with a disability studies background into a design space so they can start asking the hard questions and the right questions so that we can get past this -- this frame of mind that only thinks of disability in terms of just accessibility?
>> Leigh: I'm starting to see this -- it's starting to become clear to me a little bit more. So, let's talk a little bit more about this. Because I imagine that these are questions that many of us designers don't have to deal with on a day-to-day basis. And so, we're not thinking about it. But what I'm hearing is that part of this argument is that when you incorporate a designer or researcher with a disability into your team, you are changing perspectives. And you may be shifting perspectives -- across the team -- you're shifting perspectives that are much larger than just that one person's disability is. Is that sort of getting there?
>> Liz: Yeah.
>> Leigh: I would love to just piece this apart just a little bit. Because my understanding is obviously very different than yours. And I think the understanding of a designer who doesn't have a disability is going be -- we don't think about these things on a day-to-day basis.
And so, I would love to increase our understanding of why this is so important and what we can do about it. That is what I would really love to do.
>> Liz: Yeah.
>> Leigh: And what I'm hearing is that by bringing these people -- by -- sorry, that didn't sound right. And that, you know, that's another weird thing.
>> Liz: Yeah, by bringing -- yeah, yeah.
>> Leigh: That's another weird thing, I had this conversation with another person and he is an inclusivity and diversity advocate. And he's black and he talks about how that is a hard thing for people who are not black to talk about.
>> Liz: Yeah.
>> Leigh: So, you know, a lot of this really is about language. And I'm -- and not being sure what to say or saying the wrong thing and being afraid of that. But --
>> Liz: Yep.
>> Leigh: And that must be difficult also for a designer with a disability to be in a team. So a team, if they approach this with the right mind-set, like, a mind-set of curiosity and learning as opposed to like doing good - That they'll learn new perspectives.
And I guess -- I'm wondering if I'm sort of getting at it.
>> Liz: Yeah, you are. I, just like my disabled peers, we exist as friction. The work that I do, it's wildly painful, right? We come into spaces where people feel good about something they've done. They're very proud of themselves. And we tell them, but that doesn't feel good to us, right? Like, we're a bubble burster. And it's horrible.
And, you know, the example I'm bringing to IxDA is -- so, like a year ago I was invited into IDEO. And they -- and this is really -- this moment has informed my work up until this talk, which I'm in the process of writing. But I was invited to IDEO. They wanted to show me a technology that they had created that they said was intended to get disabled people hired. And so, I said, "Great! What disabled people did you hire to create this technology that's intended to get disabled people hired?" And they said, "None." And I was like, well, good luck, right? The thing that they set out to do, right? They set out to fix this thing, but they didn't realize that in their solution they had embedded their own biases, right?
It's like, how can you create a technology that's intended to do something if you can't do the thing as you're creating it. And so, it felt awful, like I thought that there was opportunity there. And it very much closed the door. And I remember a few months later they posted online -- they had created this -- it's a deck of cards. I think it's called Adapt-A-Pack. And they had created this deck of cards. And it was intended to ease the biases for companies that were interested in doing disability.
And I took one look at it and was like, do they not realize that they just made a deck of cards for brands who want to do disability without actually having to talk to disabled people? Like, do they not realize that? And so, you know, it's horribly painful, right? People are creating interventions to get around actually having to talk to us.
And we burst that bubble.
>> Leigh: What was the reaction?
>> Liz: I haven't heard from them in a year you know?
>> Leigh: Oh, interesting.
>> Liz: And, you know, so, for me, what that's caused me to do, is, I've spent the last year dissecting two things. The first is, is design thinking. And then what that led me to was to design empathy, right?
So, for me, you know, IDEO, nobody does -- besides d.school, nobody does design thinking like IDEO. But the way I see it is, is that design thinking is a methodology, right? That was created by white men who have really no -- had no equals, right? This is like the 1960s. These are guys that were at the top of their profession, they were aligned with the greatest institutions in the world. And what they saw was that design wasn't reaching everybody. And so, they created this system based on empathy to fill in the gaps.
But the thing is, is when you look at empathy, you realize that -- that like other sort of charitable approaches, it's actually caused just as many problems as the solutions that it's trying to sort of create.
And so, if you boil it down and look at it step-by-step, you know, the first step is, is cultivating empathy. But to a disabled person, it can feel a little less like empathy and a little bit more like designers are coming in, they're speaking with us, they're observing us, they're taking our life hack welcomes right? Our ingenuity, and then they're going to sell it back to us as inspirational do good, right? Without ever giving us credit. And so, it makes me think of -- I wrote this piece about Betsy Farber in the "New York Times" is called "We're the Original Life Hackers."
And the basic premise is, is that there is this story and it's told by OXO where Sam Farber saw that his wife was having a hard time peeling a carrot because of her arthritis, and so, he decided to make a peeler that was easier for her to use. But one day I decided to call up Betsy and ask her about the story, and the first thing that she said to me was is,"I'm gonna go down in history as being Sam's lowly crippled wife when it was my idea in the first place," right?
And so, like, that's empathy. So, that's step one. Then you go into step two, right? And what you find is that step two is defining the problem. But what you find is that because we're not able to lead these conversations, it's oftentimes us that's defined as the problem rather than the problem being defined as the problem. So, it becomes about what we can or can't do rather than how something does or doesn't work for us.
So, you've got our insights gleaned, right? And then we are defined as the problem and then they enter this iterative process of ideation, prototyping, and testing to get to what I call the unacknowledged sixth step of design thinking which is design thanking because, you know, I'm then expected to walk into IDEO and say thank you for this technology when really it's causing me pain, right? And discomfort.
>> Leigh: And what's a better way?
>> Liz: So, I -- what I propose is design questioning. Which is just, you know, step-by-step, look at design thinking from the user's perspective. But even with that, I, you know, I think it requires we have a full understanding of empathy. Because in -- and again, this is this thing that I always say is we've convinced ourselves that things that do a certain way feel a certain thing and I think we're spending more time in design thinking trying to create things that feel empathetic than we are trying to create solutions. Is how it feels to me.
>> Leigh: Tell me a little bit more about design questioning and how that differs from, like, the empathy sort of process that you were seeing?
>> Liz: The first is that it -- empathy as we're performing it, it reifies class and power structure, so, you always have the empathizer and then you always have the empathizee, or sort of the recipient, right? And one is always on top, right? Like IDEO or the design thinker is always the empathizer, and then the recipient remains sort of a class below.
The second thing is, is I believe it prescribes emotion. So, it tells us that we have to feel a certain way about a situation or we have to achieve a certain feeling rather than being allowed to kind of feel what we feel. And then the third thing is, is it silences the recipient so that, you know, we can't express critique or thought about it. We are expected to only be grateful.
And so, for me, when I look at design questioning and think to myself, like, okay, like, how does this work? I -- what the thing I've come to is this idea that I call mutuality. And what mutuality is, is it's a radical act by an individual or a group of individuals that's intended to create space for sustainable participation within a system or institution that benefits from representing or serving us.
And so, for me, there's only one time in the entire process when mutuality can take place, and that's at the moment when gratitude is expected because that's the only time that the perceived recipient is actually valued as a participant. And so, instead of expressing gratitude, it is our role to ask the hard questions and to critique.
And so, that's, for me, what design questioning really represents. How is that we can use -- whenever time we're allowed into the process to question the process? Rather than be grateful that we were a part of it or a recipient of it.
>> Leigh: And this requires having an actual, disabled person there. Not just empathizing and assuming this is what the disabled person would feel or think.
>> Liz: Yeah. And it also takes a certain type of disabled person, right? It takes an advocate. Because usually if you're going to give somebody an opportunity, they're not going to bend and sway, right? Like, this is a full commitment to enacting change. You know? It's so tough, you know, I think -- disabled people make a third less than anybody else in the world, right? And so, if we are given opportunity, why are we going to go in there and do the thing that we exist in the world as? Which is to create friction. We just want to be included.
But we don't just get to be included, right that's not how inclusion feels to us. Inclusion in the way it's sort of done, it forces us to participate within a flow that is pushing against us, right? We're going against the tide. And so, at some point someone somewhere needs to be able to say, okay. You're allowed to be disabled in this space. You're allowed to create the friction. And we're not going to exclude you because of it. And that's really where I see my role.
>> Leigh: And so, I'm assuming that these are definitely the reasons why you founded The Disabled List, which is a resource for companies to hire disabled creatives. And you launched a program called WITH, so --
>> Liz: Yeah, the WITH Fellowship.
>> Leigh: The WITH Fellowship. Can you tell us a little bit more about those and also how companies and designers with disabilities can use those resources?
>> Liz: Yeah, so, I created the WITH Fellowship really to insert disabled people into design spaces. And, again, it's with the goal of creating friction. And so, they're just three-month fellowships with disabled creatives. And, again, it's to really start implementing this process of designing with rather than for. And the -- the most interesting thing that I've encountered because of it is that when people hear of the WITH Fellowship, they say, "Oh, like, so, this is co-design." And I say, "No, this is not co-design at all, it's actually the antithesis of co-design.” Because co-design is determined by the designers, right? Like designers get to determine when and how the disabled person is included and involved in the process. WITH, we're just inserting ourselves into the process, right? We're saying we're here, we're friction, and we're going to shift the entire way that this is happening. And so, it's, you know, it's strategic. I think it's been so fascinating because, you know, we had our first cohort. It was a massive hit. We're about to start our second cohort. We're growing. We just started in New York City. And now we're in New York and San Francisco.
And the thing I'm starting to realize is that there is always an outlier within a large corporation that's hungry for it, right? And so, we do have allies and advocates. And it's a matter of kind of growing that political power so that this becomes the status quo. That there are people within organizations that exist to create friction.
>> Leigh: That's fascinating. I mean, I think that's just really a radically different approach.
>> Liz: Well, I think the other approach -- what is it? You bring disabled people in and you tell them to conform. Like, I don't think that's a good approach.
>> Leigh: Right.
>> Liz: So, it's like what other way is there?
>> Leigh: Right. Because what you're saying is, what's happening right now isn't working. So, let's change it, right?
>> Liz: Yeah, yeah.
>> Leigh: And tell me a little bit more about The Disabled List.
>> Liz: we started out as something called The Inclusive Fashion Design Collective. And that was intended to advocate for product. And then a couple of years ago I realized I'm not interested in inclusion and I'm not interested in product, right? I'm interested in people.
And for me there's sort of multiple aspects to what we're doing. So, we do consult with companies. We do strategy. We do UX research. I like to say we're putting the "Us" back in user, right? Because it's disability-driven UX research. You know, we've got industrial designers, we've got graphic designers, we do all sorts of design-related interventions.
also the speculative aspect which is where I think like the real juice of disability design lays which is how can we redesign our history? How can we design humor into these processes? You know? How can we use speculation to shift the way that we are perceived? And sort of within speculation, I think a large part of our work is really framed around critique. But it goes into sort of embedding disability studies into design curriculum.
>> Leigh: So, are you working with any specific design programs?
>> Liz: Yeah. There's a handful of them. We're all -- there's more than a handful of them. We're all at the beginning of conversations. And it's powerful. I think it's probably the most important element of our work. We're often approached to do talks and workshops. But for me, it's how can we get in and actually do a teacher training you know? How can we actually train the teachers what to look for and what to prioritize and -- and what to say, right? You've said -- I think you've said a couple of times that you find the language hard. Try teaching it. You know?
>> Leigh: Is part of what you're doing putting disabled designers into the teaching positions?
>> Liz: Yeah, yeah. Absolutely.
Not to say this is only something that can be done by disabled people. I think I have a few of my closest friends that are really invested in this space are not. But what I look at is who is capable of developing this lens? I don't think as a society we're there yet, right? Like, we don't always -- we're not so eager to have our bubble burst. Especially with one of the few things that sort of traditionally makes us feel good about ourselves which is what disabled people call inspiration important, right?
Where the objectification of our body is used to inspire other people, right? Disabled people make everybody else in society feel better about themselves. And I'm taking that away. Right? And that's not fun.
>> Leigh: It sounds to me like one of the things that's required if someone who is not disabled wants to take on some of these topics or improvements or advocacy, there's a lot of learning that needs to be done.
>> Liz: Well, I think that's the thing is, is anybody -- anybody that listens to this podcast especially has committed their lives to the rigor of design, right? Like, they have committed to continuing education. It doesn't matter who the person is. If they're at this podcast, that is a commitment they have made.
And I have long wondered why is that we're not applying that rigor in design to disability? Right? Why is it that we think we know?
>> Leigh: Well, it ends up being something kind of that you can read a checklist. You know? Like that's what accessibility oftentimes kind of boils down to is a checklist of heuristics. And that's not what you're talking about at all.
>> Liz: No, I'm talking about a culture.
>> Leigh: Yeah. A culture shift, really. And a perspective shift.
>> Liz: Yeah.
>> Leigh: So, you are giving a keynote at the upcoming Interaction 19 in Seattle in February.
I'm just gonna guess that it has something to do with disability design.
>> Liz: Yeah. Maybe one or two things.
>> Leigh: Yeah.
>> Liz: The rest will be about my dog, Hankie.
>> Leigh: Great!
>> Liz: Just gonna be a slide show of my dog when I'm done.
>> Leigh: Yeah, they have showed that having puppies in slide shows actually increases the engagement.
>> Liz: That's super-hilarious, yeah. Hankie is the most engaged. So, yeah, I'm a bubble burster. It's tough. You know? I think this is one of the reasons why I incorporate so much humor into my talks is. Is like, how is that we can allow ourselves to embrace the exact opposite of our instincts, right?
I think about what I knew about disability when I started my "The Girl with the Purple Cane" blog. And I knew very little. I'm probably glad not much of it exists, sort of thank god. Because I imagine how ashamed I would be of many that I wrote back then and a lot of the assumptions that I made. And so, for me, the thing I want to show is, is that this whole thing is a journey.
And it's a process of discovery. There's this quote by Stephen Hawking, and I don't know it specifically. But what he says is that the universe is expansive. But it also has no boundary or edge. And I remember the first time I read it, I was thinking to myself, okay, was Stephen Hawking, was he talking about himself, right? His disability? His experience with disability. Or was he talking about his ideas around the universe?
I honestly think that much of his work is interchangeable. But what it comes down to is, is we are so invested in the universality of disability, which I argue does not exist, but nobody's willing to consider the expansiveness of it. And what it gives back.
And so, for me, it's about how to you kind of delve into this journey of expanding what you know and expanding your own universe? And I think that for me is really the lesson of this all. Is there's no way to know until you start getting it wrong. But I guess also at the same time, please, dear god, don't get it wrong on a global scale because it's not a good thing.
>> Leigh: Well, I feel like we've really just touched the surface here. But I'm also really excited to hear your keynote at Interaction 19. I know it's going to be really interesting. Before I let you go, a couple last questions. One is --How can people follow you on the Internet places?
>> Liz: Yeah. So, we're disabledlistorg on Instagram and on Twitter. My own personal Twitter, which is mostly just like a gripe fest is elizjackson. And the website is disabledlist.org.
>> Leigh: Okay. And then the last question is, this is the UX Cake podcast so I would like to know, what is your favorite kind of cake?
>> Liz: Vanilla vanilla.
>> Leigh: That's vanilla frosting with vanilla cake.
>> Liz: Uh-huh.
>> Leigh: Awesome.
>> Liz: Is that the worst -- I am committed. It is my cake. Is that the worst answer you've gotten?
>> Leigh: Well, you know, I don't think I can be a judge of people's preferences for cake.
>> Liz: I'm very passionate about vanilla vanilla.
>> Leigh: I think that's awesome. Like, if you're gonna go in on something that's vanilla, you should totally go all in. Right?
>> Yeah. Wasn't there a piece in "New York Times" like last week about how people talk about the boringness of vanilla and how it's actually not boring at all?
>> Leigh: That's true. You could have all types of vanilla --
>> Liz: I feel like there's something very disability-centric about that. It's a lot more complex than you think it is. Don't oversimplify.
>> Leigh: Yeah. That's true. I want to thank you so much, Liz, for this really fascinating conversation and for your time today. I really enjoyed our conversation.
>> Liz: Yeah, thank you so much for having me and I'm excited to meet you in person after my keynote.
>> Leigh: Yeah - Interaction 19!