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Spark Transcript for November 8, 2019

Host: Nora Young

STORIES FROM THIS EPISODE

Prologue

NORA YOUNG: Hi, I'm Nora Young. This is Spark. When we talk about inclusive design, what we're really talking about is not excluding anybody. That's particularly clear when it comes to removing barriers for people with disabilities. Accessibility isn't something that just happens. It's about making deliberate design decisions that won't exclude someone with a disability. So today on Spark we explore the relationship between design and disability and why accessibility is not only good design, but also a civil right. We start in an unlikely place -- the Cuisinart.

[Music]

Part 1: Commitment for Accessibility

Guest: Bess Williamson

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[Crowd applauds]

PETER GZOWSKI: Thank you and welcome. If you follow the art of cooking or the trends in kitchenware and implements at all, you'll know that this instrument sitting beside me on this counter -- the "Cuisinart" -- is become a very important fact of eating and life in the 1970s.

NY: That's right. The Cusinart food processor goes back to the days when CBC's Peter Gzowski was on television. The Cuisinart was introduced in 1973, and it quickly became synonymous with food processing. But what you may not know is that the Cuisinart is also a great example of accessible design.

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BESS WILLIAMSON: The designer of the Cuisinart -- Marc Harrison -- was a professor at the Rhode Island School of Design and did a lot of research into disability with his students. And then he incorporated that knowledge of things like manual impairment, you know visual limitations, and so on, into the design of the Cuisinart. So if we think of this food processor that just has these two super simple buttons, right? [Machine sound] Pulse and off, right? Not a million tiny buttons that your little fingers have to click. You know sort of a large, smooth, surface -- a big contrast label. So he incorporated this research into a product that just presents itself as sort of the best. You know suggesting that these design responses to disability produce a better product overall.

NY: This is Bess Williamson. She teaches design history at the School of the Art Institute of Chicago. The story of the Cusinart is just one example of accessible design from her book "Accessible America: A History of Disability and Design."

BESS WILLIAMSON: So my book looks at the design responses to the idea of disability rights. Basically tracing the way that Americans changed attitudes about disability in the later 20th century and that there are direct design outcomes that come from that.

NY: So first of all, what do we mean by the term "accessible?" How would you define it?

BESS WILLIAMSON: So accessible -- I think -- it's an interesting term, right, because it sounds familiar but often applies very very differently. I mean even we often talk about things like accessibility to education or health care, right. Which aren't specific to a particular population. But the way that I approach it is thinking about the physical environment and it's designed for disabled people.

NY: So looking at the history of accessibility, you outline the significance of these two events: injured veterans returning home after World War Two and the polio epidemic. So how did these events affect the perception of the need for accessibility?

BESS WILLIAMSON: Yes. So a big cultural change in the way that folks in the U.S. -- and I'd say really worldwide -- people view disability occurred when this convergence of two populations sort of coming into the spotlight at the end of World War Two, with veterans returning especially in the U.S. and in the West, sort of victorious -- and a polio epidemic. And so this created two very appealing populations, right, people who are seen as very deserving of lifelong success for polio -- it's often depicted through white innocent children who have the rest of their lives in front of them. So this creates a kind of direct connection with the shifting sense that something should be done to make the public environment accessible.

NY: Yeah. So it's not just that there suddenly were a lot of people coming back from World War Two or who were recovering from polio, but it was the way they were seen. Can you tell me a bit more about the narrative and what that looked like for these groups?

BESS WILLIAMSON: Yeah. So both of these narratives, I should say, are very selective, right. And polio affects a broad range of people. Likewise, there are veterans who are of different races -- there are even men and women. Combat armed forces are considered to be men but there are some women who fall into that category as well and like flight nurses and so on. But what's depicted is the young man, you know, sort of all future is in front of him who is being limited by not only his physical disability, but by things outside of that, right. By other people's attitudes. There's a big push post-war for employer education, right. Programs that acknowledge that disability isn't just in the individual, but also it has a social component. And then also in their physical environment. For example, there are these films of veterans and one of them who became nationally famous, Harold Russell.

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VOICE: I got my prostheses, as they're called, and the doc(tor) explained just how to work them. When I came back to the ward, I couldn't help flashing my new hooks. I wanted to drink a toast to the world with my own new hands, even if it had to be milk.

BESS WILLIAMSON: First as in an army film and then becomes one of the stars of "The Best Years of Our Lives," right. These men who have known prosthetic limbs in many cases and what they're doing for the camera is kind of performing all of their skills. And so we can think of this in terms of kind of the ideal of the normal man shaving, smoking, driving, even like fighting, and firing guns, right. (These) Are all things that technology can make possible for them. And I think there's a real sense that technology should make that possible for them and that the government should make that happen, right. It shouldn't be just sort of on them individually.

NY: You also described this early kind of D-I-Y ingenuity of people with disabilities who out of necessity really had to customize household technologies to make their lives more accessible. So these included things like customized ramps, mouth sticks, modified cars. Were there examples that you came across that really stood out for you?

BESS WILLIAMSON: Yeah. I mean this was an amazing discovery. I should say I'm not the only person who's discovered this source but I was really amazed by it. This magazine called the "Toomeyville Gazette" that was this kind of zine for the polio generation. It started at a polio rehabilitation hospital in Toomeyville, Ohio. But then sort of continued as this community publication. And people were just mailing in photographs and descriptions of the things they've done in their everyday home-life. And one of the things that I noticed, you know, there's a particular attention to the house. As I've mentioned, in the era of polio and post-war and other illnesses, for example, spinal cord injury, people are surviving at a much greater rate in this period -- there is a huge push to create accessibility, but it's still very limited. So there are no sort of public forms of access in the 1950s, 1960s, really into the 1970s in the U.S. So people are being told in rehabilitation you should be independent, you should strive to be independent, you should strive to take up a role of support in your household whether it's working as a man or being sort of wife and mother for women. And their houses are not built for this, right. So there is a tremendous amount of information sharing in terms of what materials make for a good ramp. But also a lot of these small things. So there is a whole sharing about like products that are helpful -- like Tupperware, electric knives, different kinds of spoons and cooking utensils, right. So there's this kind of alternative consumer conversation that's happening among disabled people by disabled people for disabled people. It's very sunny and optimistic. But at times they also acknowledge things like loneliness or just frustration and not being able to participate and go to college or other kinds of activities. So I see it as a very interesting and I think really excellent document of the kind of direct engagement with technology that many disabled people had and continue to have. That doesn't tend to be credited as kind of great inventors or great designers in history.

NY: Yeah. I mean some of it was sort of incredibly inventive. Like there was one guy who basically totally retrofit his car so he could use it while he was in a wheelchair.

BESS WILLIAMSON: Yeah. There's some amazing cars. And the one I think you are referring to is this man who took an old Peugeot and cut basically the entire back and top off of it and installed a moving platform so he could sort of elevator himself up. And then the platform also would rotate around so he could like go in reverse and be able to see and so on. And of course, this is like definitely not a legal vehicle on the road. [Laughs] So I can kind of imagine, you know, perhaps he was using it just sort of locally in his small town -- maybe for short trips. But it really speaks to the way that the automobile is a kind of mobility device as well. But that's such a part of kind of American culture of the 50s and 60s too -- this idea of tinkering with your car.

NY: So these D-I-Y solutions certainly demonstrate a creative approach, but were they also in some sense a reminder that the burden was still on the people with disabilities to figure it out for themselves?

BESS WILLIAMSON: I think they are. I think throughout conversations around access there is always this sense of you know sort of creating a little bit of access but not creating too much. There's always this kind of looming danger imagined that if things are too accessible people will not gain the character that comes through struggle. Even back to the veterans, right, there's this whole conversation about giving subsidies for them to have specially fitted cars. And it's like, 'Oh, we shouldn't give it to all veterans. Only veterans that are missing a leg.' Right? So they can drive. 'You know it shouldn't be for blind veterans because then it will encourage them to have someone else drive them.' So there's some moments of real insight I think into a kind of conservatism around accessibility also that starts from the very beginning. And I think really flavors accessible design and architecture as it becomes a part of legal requirements later.

NY: So it's conservatism -- and is it also some sort of sense of like worthiness or something?

BESS WILLIAMSON: I think so, right. There is a strong sense -- and I think we can also see this kind of script in other forms of rights and sort of social openness and opportunity in the post-war period for women, for African-Americans, right. That there's a notion of -- quote unquote -- "self-help" is a term that's often described that in order to gain equality you have to prove that you're worth it. And this is something that's echoed. And I had such a fortune of working with a number of mentors who had sort of been of this generation. This sense that you have to prove yourself to have a good attitude in order to be sort of considered worth the investment. And that...it's just so striking when we consider in what circumstances do we consider populations deserving of like the best of design as opposed to the bare bones of design.

NY: One of the things you address in your book is what we might call the ideology of how access was talked about and accessibility was talked about in a U.S. context. Can you tell me a bit about that?

BESS WILLIAMSON: Yeah. And this is why it's so interesting to talk about this with people outside of the United States. I started this project thinking of the U.S. as the leader on this issue because the U.S. is the first country that had a federal nation-wide law requiring access -- the Americans with Disabilities Act of 1990. And in many ways the U.S. does remain you know a leader in some ways when it comes to this. But I would also always remember that this is embedded within a very market-driven, consumer-driven, approach to design and technology, right. So much of access also emphasizes the individual consumer, right. The idea of shopping, going to the movies, right, and especially working -- as the outcome of making access as opposed to countries where there's a broader social security net, especially in health care. And so the push may not always be creating access so that you can create consumers, taxpayers, individual workers, but instead a sense of sort of broad social supports that would help children, older folks, you know people of working age and so on. So that's one of the things that I find in contrast. So in the U.S. there may be tremendous support for accessibility in offices and at the mall, but there's not as much push for universal health care.

[Music]

NY: I'm Nora Young. You're listening to Spark. My guest is Bess Williamson. She is the author of "Accessible America: A History of Disability and Design." Now, as Bess mentioned, the Americans with Disabilities Act enacted in 1990, made the U.S. the first country to have a federal law requiring accessibility. Here in Canada, the Canadian Charter of Rights and Freedoms protects people with disabilities from discrimination. It took until 2019 to put federal accessibility legislation in place with the passing a "Bill C-81" an act to ensure a barrier free Canada. But as Bess explored in her book, enforcing accessibility is not easy. She found some resistance to the idea of mandated accessibility.

NY: Public transit is one area where accessibility has always been crucial. In your research, you also found that transit issues created a bit of a backlash actually. So what were some of the early criticisms of accessible transit?

BESS WILLIAMSON: Yes. So one of the things I found so notable -- there's a there's a publication in the middle 1960s from the U.S. government that says you know how could there be any opposition to these changes? They take such small effort and they can help millions of people. And I think we see this all over the place, right, where changes that create access end up helping a broader population. But there is quite a bit of backlash, right. Sort of unexpected I think. And I pinpoint this controversy in the 1970s over accessible public transit as one of the most public moments when this question of cost-versus-benefit really comes up. It's a complicated story, obviously, but there are buses proposed that include a wheelchair ramp in the front that are sort of bigger and wider and more comfortable, that are seen as creating, quote unquote, "the bus of the future." And at first they're accepted, but then auto companies push back against them because they require retooling on their assembly lines. And it basically kicks off a decade or more of very contentious lawsuits, protests, counter protests, op eds in the newspaper and so on that are over this question of basically is it worth the investment to retool and make these accessible buses? It comes down to all these tiny details like: you know the wheelchair ramp in the front or the back? Should it be one bus per every 10 or every single bus? And then significantly, should it be on the public bus route or should there be a separate fleet of what we call para-transit, individual cars that pick people up door-to-door? And these conversations, I think, do a lot to shape the impression that disability access is very expensive and very inconvenient and that it requires a lot of compromise rather than that sort of generous notion -- why would anybody be opposed to this?

NY: But does that also reflect a sense when you talk about it being evaluated in terms of cost benefit that it's not really, at least at that point, installed as being like basically just a rights issue? It's not really a cost-benefit issue. It's a rights issue.

BESS WILLIAMSON: Yes. And I think we still see aspects of this in conversations over access, right. Which is always an emphasis on the idea that if you create access for certain disabled populations, that you'll end up benefiting everyone which I think is a very powerful design principle. But it also raises the question: what about those design elements that don't benefit everyone? Like are those still worthwhile? So what do we have the right to? And I think that the notion of civil rights being tied to technology in this way you know was very challenging I think in many cases. I mean just as honestly, you know, when you get down to the enactment of rights can often be very challenging to whoever is in power, right. I haven't considered this population. And so it seems wrong. It seems out of the ordinary. So I think this was really produced in a lot of ways through that conversation around public transportation.

NY: How important a role has activism and protest played both in accessibility and also getting society to see accessibility as a civil right?

BESS WILLIAMSON: I think activism has played a significant role, particularly -- again as I mentioned, there's a moment and I think ongoing sense of beneficence about this, right. This is great. This is quote unquote, "helping the handicapped." This is a kind of humanitarian or charitable effort. And as a result often new laws and codes often don't come with strong enforcement because there's this sense like this is an awareness issue. If we educate architects as to the best approaches, they'll just make those changes. And what sort of happened is there are some initial laws and codes in the late 1960s and early 1970s that are put out by the government and just are not followed. And disabled activists read those regulations and say, 'look, you know, this is what the regulation says.' So they they have to use the strong arm of the law. You know suing, protest, sitting-in. There's a month-long occupation of a federal government building in San Francisco in 1977 that I did a lot of the work to push for firm regulation. So there's this kind of lesson that's learned I think which is you can't just require access, you have to enforce access. And this remains something a weakness of the Americans with Disabilities Act which requires access but doesn't build in a kind of check and enforcement system. So the only way to kind of get something fixed is to individually complain or sue which can be a very slow process.

NY: So the Americans with Disabilities Act from 1990 has had a big impact on accessibility in the U.S. But you point out that some people felt that it led to this kind of tacked on access just to kind of comply with the law. So nearly 30 years later, how much has it influenced the idea of building accessibility into design goals in the first place?

BESS WILLIAMSON: Yeah I think you know, as years go on we we see a lot of improvements. But still, you know, I ask my students who are architecture and design students, what are the superstars of accessible design? What are the amazing buildings? And there aren't many, right. We don't have a kind of "greatest hits of access." There are a few. I mean one we might point to is Frank Lloyd Wright's "Guggenheim Museum." It's not built to code, but it has this elegant ramp down the middle. And even to think of kind of aesthetically -- constructing a building around a feature like a ramp rather than having that ramp be sort of to the side, hidden away. It's really notable. So there are a few really great buildings that are examples of this but it will be something like the top five out there. And so we can just think in terms of cultural shifts. It still remains relatively rare that access is seen as something exciting and creative and kind of cutting edge in the architecture world as opposed to just sort of a requirement.

NY: Beyond architecture, are more designers starting to see accessibility as just a value of good design?

BESS WILLIAMSON: Yes. And I would say actually in some cases this is stronger in the non-architectural design world. I mean certainly when it comes to graphic design the readability of materials is something that cuts across very many different spectrums of ability, disability, just simply sort of personal preference. So in our devices, especially now, we have so many more options in terms of controlling things like large type versus small type, colour contrast, you know these kinds of things that become a part of sort of the array of conveniences that we have. And I think they're really not seen as you know something that is an add-on to a technology but something that's built into it and that's accepted as something that's functioning well, as something that you can easily adjust and figure out how to adapt to your own particular interests or needs.

NY: Is there a danger though that we get taken with kind of cool designs rather than the sort of less sexy things like accessible subway stations or washrooms on the main floor, you know that kind of stuff?

BESS WILLIAMSON: Yes I think so. I mean one thing that I mentioned in the book is the prosthetic limb remains this kind of wonderful object, of fascination, something that's in films, in fashion, in technology, museums, as kind of this wonderful thing. But the number of people who actually use prosthetic limbs is quite small. And the issues of personal preference may be different from that sort of technological wonder and dream. And so many engineering programs, youth programs, using 3D printers, fashion runways and so on are fixated on this one particular object. I always sort of joke: will we have a fashion show that involves an accessible public bus? [Laughter] Or just a ramp even You know the question of you know how certain objects come into light and what sort of implications there are. There's such a wide range of sort of attentions. And I think the role of aesthetics is so powerful. But we also always should question, you know, what about the things that are not beautiful? Or aren't easy to design? What pressures are there on certain populations to kind of find their way into the technological kind of spotlight in that way?

NY: You conclude in your book that -- and this is a quote -- "Designing an accessible America, still a vision left unfulfilled. Requires embedding design in systems that can support rights and equality in ways that go beyond the material." So what do you mean by going beyond the material?

BESS WILLIAMSON: Well, ultimately as a design historian it's probably a challenging conclusion to come to -- but ultimately to say the objects are not it. You kind of can't tell if something is accessible or equitable just by looking at it. And I think that is something that I wasn't as confident about when I first started. You know I mean one of the things that is remarkable to think of is how sort of physical and material these issues are. You know, tough to think of looking at something and considering like is it equitable or is it exclusive? That said, so much of the truth of things comes down to kind of the details. Like what does it take to get access to that object? And particularly what are the underlying sort of economic, racial, kind of cultural divides, that keep disability in the realm of the taboo or the sort of second rate when it comes to our planning and our creation of environments. And I think it truly takes both a social commitment to equality and a technological commitment to finding things that work really well in order to really fulfill this. So it takes kind of the commitment of going beyond just what is as I've said, right, just what's beautiful or just what functions really well towards really thinking, 'Okay well, can we take on the more challenging parts of this?' And I think that takes really a social commitment.

NY: Bess thanks so much for talking to us about it.

BESS WILLIAMSON: Thanks Nora.

NY: Bess Williamson teaches design history at the School of the Art Institute of Chicago, and she's the author of "Accessible America: A History of Disability and Design."

Part 2: Disability dongles

Guests: Liz Jackson, Amelia Abreu

NY: We've got more in our look at disability design. Designer Liz Jackson tells us about disability dongles; flashy but useful solutions to problems of people with disabilities never knew they had.

LIZ JACKSON: What they want is, is that they want access. They want to ramps. They want elevators. and what they realize is, is that as designers are spending more and more time trying to come up with a specific fix the less we're going to start to incorporate access to day to day lives.

NY: More on that coming up

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NY: I'm Nora Young, this is Spark from your friends at CBC Radio. Today we're exploring the relationship between disability and design. Most designers want to gain a deeper understanding of the people they're designing for. That's why empathy is one of the first words that comes up in discussions about design thinking. I understand the user, how they live, their challenges and needs. one way to build empathy into the design process is through simulation especially when it comes to accessibility design. In these simulations design working groups try on the constraints of someone with a disability to invoke empathy. But one designer from Portland, Oregon, says no thanks. Amelia Abreu is a design researcher and the founder of UN night school. for Amelia, these sorts of simulations can feel like stunts that don't actually involve the people who navigate the world with differing abilities. These simulations include things like outings in borrowed wheelchairs to try to be more mindful of accessibility or, an activity that Amelia encountered, submerging your hands in ice water to simulate motor impairments.

AMELIA ABREU: So this is you just taking a [unintelligible] tub full of ice cubes into a conference room and you know I've seen this done before where, you know, you all take turns dipping your hands into a tub of ice cubes and then you squeal. it's very abject and you say: ‘Oh my God that's so cold. How could anyone stand live with arthritis?’ So when meanwhile arthritis is a really common thing.

NG: So what troubles you about this simulation as empathy, as a way of trying to understand the experience of someone with a disability?

AMELIA ABREU: Well I think the thing that concerns me the most is that disabilities are incredibly common. It depends on how old you are or how young you are. But you know most of us are born pretty helpless and need a lot of help at the end of life as well. So you know a lot of the way that we think about disability is very abject, meaning that we think oh this is somebody else. This is somebody else's tragic problem when really disability is a part of life. If we're lucky enough to live into a ripe old age we'll probably experience some motor impairment, vision impairment, cognitive impairments and this is a fact of life. So if we want to think about disability let's talk about it in the context of everyday life instead of posing it as this, you know, terrible thing that happens to other people. Mm hmm.

NY: Do you think these kind of simulations could also cause someone to underestimate what someone with a disability is capable of doing?

AMELIA ABREU: Oh definitely. And there's research to show that disability simulations actually allow people to form their own conclusions which are once again not based on lived experience but through a momentary experiment and therefore overlook the point of view of folks who are living with disabilities and often living well

NY: Because that's one thing that's come up over the course of preparing this episode is that people's disabilities often are coming up with innovative techniques and tools and so on to help them navigate the world around them and manage their disability on their own. So I suppose if you're simulating that you're not having full access to that suite of innovation and tools that a person will be coming up with

AMELIA ABREU: Totally you know there's this fundamental disability rights slogan Nothing about Us Without Us. And people with disabilities have to be creative. They have to improvise. And when you're not bringing the full range of human experience into your design process you're going to overlook a lot.

NY: Empathy is the ability to understand and share someone's experience. And it's something that's talked about a lot in design circles. But you point out that is more complex than it sounds. What do you mean by that?

AMELIA ABREU: Well, empathy isn't like a six pack of beer you can bring to a party. It's something you can experience and you can experience it on a spectrum. And I think that we all have blind spots in our empathy fields. You know, I often joke, I’m a small blond woman and I work around a bunch of men a lot of the time and I say well you know like you can't understand what it's like to be a blonde woman walking on the street, like you if you just wear a blonde wig, it would only give you one set of perspectives like into my experience and my experience is different than that of another blonde woman. So you know what are we trying to have empathy for and why is it thought of as easier to generate vague empathy for other people than to actually listen to other folks’ experiences.

NY: Yes. So what's a better way to preach understanding the experiences of people with a disability?

AMELIA ABREU: Well I think first of all, number one, just acknowledging how common it is. 80 percent of adults over the age of 40 need reading glasses. And as I'm a design researcher that's my day job. And I think one of the things that's really hard is generating meaningful community relationships. And that means having lots of contact with folks for more than transactional purposes who are living near you and part of your life. And sometimes I feel like we can all benefit from just talking to the janitor, talking to the other folks at the bus stop, talking to the other parents at our kids schools a lot more. I think, honestly, at the beginning of life and at the end of life we're a lot more democratic. I make it a point to try and spend time with older folks. I think it's really important for my line of work. Folks over the age of 60 are the fastest growing population of Internet users. They are also, you know, there are a lot higher incidences of cognitive issues, of motor impairment and other vision issues and other form of disability in that group. And similarly I like young kids are very attuned to what it means to be inclusive of what it means to accept other people for who they are. So I think thinking about the myriad ways that we all experience the world and how they can be different is so important to designers and it's something that nobody's omniscient. Nobody can anticipate all of these things themselves.

NG: Uh-ha. Something like ramps you know that that can benefit people who use wheelchairs but also people with strollers. So why is it so important to consider kind of diversity of experience when you're thinking about inclusive design?

AMELIA ABREU: Sure. Like I'm fairly able bodied person but it was when I had a young child I realized that my accessibility case was totally different. Little children you know require holding and carrying and this limits your mobility and means you need a ramp or a different path. When I teach design classes I'll often have folks go out into a neighborhood accessibility audit and this means - I love to have folks walk in pairs especially with folks who are either taller or shorter than them or just have different perspectives - And I think that the physical markers of accessibility can tell us a lot. You know we tend to take our own experiences for granted. So noticing, like taking a fresh set of eyes and saying like Hey there's a huge crack in the sidewalk and that would be really hard to get over if you were using a mobility device, or saying oh hey the curb cut starts at this side of the street but it doesn't pick up across the street. And this shows us how patchy our infrastructure is in everyday life. And it's a good sort of parallels for more digital or more immaterial forms of design.

NY: I know you've also written about approaching design from a justice perspective. You know the designers should consider questions like who gets to speak and why. So from your perspective what can design do to make sure the voices of people with disabilities get heard?

AMELIA ABREU: Design needs to work on including a broader cross-section of human and the culture of design is often very driven by privileged white able bodied folks. So I think there's a lot of work that designers have to do in not only listening to other people but bringing those folks to the table.

NY: Amelia, thanks so much for your thoughts on this.

AMELIA ABREU: Thank you so much for having me.

NY: Amelia Abreu is a design researcher and the founder of UX night school.

[Music]

SOUNDCLIP

SARAH HENDREN: I’m Sara Hendren and I'm a professor at Olin College of Engineering teach design and Disability Studies. Eyeglasses are the most common prosthetics that people don't think of as prosthetics and so it's really important to keep talking about the kind of assimilation of eyeglasses in the culture as medical tools that at some point crossed over to become modes of fashion, accessories and modes of kind of identity and style.

GRAHAM PULLIN: Glasses eye glasses, in one symptom of that success, if I can call it that, is that we rarely think of them as medical appliances anymore. My name's Graham Pullin and I'm a researcher and a lecturer at DJ CAD which is an art college at the University of Dundee in Scotland. Eye glasses. I've achieved that ubiquity and a very ambiguous role. It's still corrective but in some ways they're aspirational and fashionable at the same time.

NY: As Amelia Abreu pointed out disabilities are incredibly common. She said many adults over 40 need reading glasses. Eye glasses are so commonplace we don't even think of them as medical assistive devices but they are just like a cane for example. So why is it that eyeglasses are considered to be fashionable and a cane isn't? That question about the stigma surrounding certain assistive devices was one that Liz Jackson spent a lot of time considering.

LIZ JACKSON: It's funny so I've been sort of doing some talks and I have increasingly been trying to write out my origin story just because I feel like in disability in order to kind of validate your entry into this space oftentimes what's expected of you as an origin story. But if I were to kind of delve into that, I would say the thing that brought me into this space is me acquiring disability about seven and a half years ago. And for me the question was is why I had so much choice with my eyeglasses and I didn't with my cane.

NY: Liz a disability advocate and design strategist and the founder of the Disabled List in the design world. She sees a tendency towards fixing things but when it comes to designing for people with disabilities that can be a problem.

LIZ JACKSON: Well I think designers are increasingly seeing disability as a project and they don't really engage in the space with a rigour. And for as much as designers really spend their lifetimes continually learning about you know their profession, when it comes to disability they think they just know. And so a lot of times the solutions that come out of it are actually deeply harmful.

NY: So how can that make people with disabilities feel like a project themselves in a way?

LIZ JACKSON: Oh I mean there's a variety of ways. You know I encounter a lot of hackathons and you know I think hackathons are a really good tool for designers to really hone their skills. But when it comes to you know a hackathon around disability what happens is at the end of the day they may come up with an over-the-top solution but all of the traction once that hackathon ends is lost and the disabled person never actually benefits from all that they contributed to that day or those hours or that week. You know there's a variety of other ways that it can be problematic. Another one is that designers frequently, actually, think that they're trying to fix a disabled person rather than to create access or fix a thing right. And what that does is it further marginalizes and stigmatizes the disabled person.

NY: I was really struck by, I think it was in one of your talks, you talked about a design school administrator who was struck by basically the first week back to class everybody wanted to design a new cane for her.

LIZ JACKSON: Yes. I learned this really interesting thing recently which is that on average in the United States and in Canada I think it's about 11 percent of college populations are disabled. But I recently discovered those numbers are much, much higher in design schools.

NY: Really?

LIZ JACKSON: And that actually feels a bit appropriate to me right because disabled people were the original life hackers right. We spend our lives cultivating an intuitive creativity because we're forced to navigate a world that's not built for our bodies. So of course you know we may be more inclined to enter creative professions. For me that begs many questions such as what is happening to these students year after year as they're going through design school? I have a feeling these are the students that are not getting their needs met and are dropping out. I feel like these are the people who once they enter their professional careers are falling through the cracks. But beyond that, and this is what you know specifically has to do with that one teacher who dreads the beginning of every school year because students show up wanting to redesign her cane and what those students don't realize is they're actually telling her that they don't like her cane, and she's perfectly happy with it. And so what happens is it's not just the disabled design students who are not getting their needs met, you have this whole other up cropping of design students who are actually deeply interested in disability but they have no knowledge. There's no disability studies program in their school so they don't even know what disability is. And so they have no way to go about it and so for me the thing that I really advocate for is if we can start to incorporate Disability Studies curriculum into design schools, what happens is as you have a space for those two groups of students to actually meet and actually meet each other's needs and to really start to build a culture and a community around it, rather than just this idea of disability as a project or a topic or a fix.

NY: To illustrate some of these points you've pointed to this phenomenon of the disability dongle. So what is a disability dongle and why is it so problematic?

LIZ JACKSON: So a disability dongle is, as I define it, is an elegant and well-intended solution but it's ultimately useless because it's a problem that we never knew we always had. So I sort of joke that disability dongles are most frequently created and designed schools. And there's some specific design firms that really kind of create this problem. So oftentimes when a new student or new design firm creates a stair climbing wheelchair what happens is if the press gives it a lot of, you know, it gets a lot of good press. And the people that created it are really kind of held up on a pedestal of this good deed that they did. But if you actually talk to disabled people they would tell you that it scares them, that it's too expensive they can't afford it, you know, that they simply don't want it. What they want is they want access. They want ramps. They want elevators. And what they realize is that as designers are spending more and more time kind of trying to come up with a specific fix, such as a stair climbing wheelchair, that's time and resources that are not allocated to actually innovating access. But more than that, the more that we as a society convince ourselves that, oh, we can just give those people a stair climbing wheelchair, the more that we do that the less that as a society we're going to start to incorporate access into day to day lives. And so what happens is if those resources get pulled back. I’ll elaborate a little bit further. So Elizabeth Guffey is just a design historian, I believe, an art historian and is also disabled. One of the things that she noticed on her campus where she teaches is that there's a new accessible sign that was rolled out over the last I'd say five or six years and it is an image of a forward leaning wheelchair user. And so a lot of states, a lot of cities, a lot of campuses and institutions have started incorporating this new sort of more active seeming accessible signage into their institutions. But what Elizabeth noticed on her campus was this as the campus was being lauded for incorporating this new and more active signage, at the same time they were actually rolling back access and taking away ramps. And so she had called that blue washing. And so we get so caught up in our good feelings about all of this that we don't actually question what the impact is of these things.

NY: Yes, I have to admit I was bit chastened, Liz, because I realize that we have profiled our share of disability dangles on Spark. So what can be done to avoid this kind of design approach?

LIZ JACKSON: I think this is really the thing, is most people most journalists most designers don't understand that disability studies is a field of study. It requires rigour. It requires commitment and that there's really really exciting and good and interesting work being done in this space. And you know I oftentimes say question what you think you know. As soon as I see something and it evokes around a disability and it evokes a good feeling like for me that triggers something to kind of look deeper and I would beg the same of you. But for me it would be to kind of start to show interest in the best ways of styles, in the Elizabeth Guffeys, and the Amy Hamreys of the world, Cynthia Bennett, Josh Halstead. Like these are all people who are doing mindblowing work in this space and can really educate all of us, especially designers, creative, people who articulate a narrative on disability and I just I wish that we didn't sort of get so caught up in our own feelings

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VOICES: This is Spark. You are listening to Spark. You're listening to Spark from your friends at CBC Radio.

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MERYL ALPER: There's this idea of well technology you know can be a fix and disability means something is broken. You're already sort of presupposing the way that they moved through the world. My name is Meryl Alper. I'm an Assistant Professor of Communication Studies at Northeastern University and I'm the author of Giving Voice: Mobile Communication, Disability and Inequality. Within the technology itself there is the you know the cultural context individuals with disabilities have themselves, not only disability as part of who they are, but everybody has a racial background. Everyone has a linguistic background. Everyone has a class and a gender background that intersex and interweaves in different ways for each person, and not only with them that within a disability label or a diagnosis. So in what ways are policies enacted for people to gain access to technology or not gain it. So a first part is to center the voices of individuals with disabilities in the conversations about what technology does and doesn't do for them and the kinds of innovations that they make or they make do with in how they experience technology. For more people with disabilities to be themselves involved in policy decisions, in technology development, for individuals with disabilities to be at the table, the real key is to is to center those voices truly, not to give voice but to truly center the voices of people with disabilities in conversations about them

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NY: I’m Nora Young. You're listening to Spark. I'm speaking with Liz Jackson. She's a design strategist and the founder of the Disabled List. So how do we shift the values of design so that people with disabilities are not seen as just the recipients of design, but actually partners in the design process?

LIZ JACKSON: Yes. And that's where I get stuck. So you know as I said at the beginning right I got into this space because I wanted to figure out and I wanted to increase choice in the marketplace.. I wanted more choices with my cane. But it didn't take me long to realize that it wasn't actually a lack of choice that was creating the problem that I was experiencing. What it actually was, was a failure to attribute and to credit disabled people in design processes. We don't understand the immense value that disabled people hold in terms of game changing innovations. If you look throughout history, w are the people who created things that changed the world? Well it's almost always a disabled person. We created the bicycle. We created the iPhone touchscreen. That's Wayne Westerman at Apple. We created cruise control, that was a blind man whose driver was making him car sick, curb cuts, the electric toothbrush, email, the interne. These are all examples of disability continuity but if you were to go onto Google and you were to search design for disability you would see that it yields more than 10 times as many search results as disability design. This idea that we are recipients of design has embedded itself into our language. And this is just simply because we get caught up in our feelings and the people in power can tell stories about how they did things that were empathetically done for us and in the process they silence us. And they don't actually stop to consider that we were actually very active in the process.

NY: You also talk about honoring what you call the friction of disabilities, so what's the friction of disability and how do we honor it?

LIZ JACKSON: Yes. So again a disabled person, the world was not built for our bodies. And so that in and of itself creates a friction. And in design we are so focused on smoothing out and fixing a thing that we never stop to consider what disabled people want. And for me the thing that I find the most delight in are creatives who are really working to, as I say, on the friction of disability. So the first person that comes to mind as an artist here in New York City where I am, her name is Shannon Finnegan. ShannonFinnegan.com. Just everything she does is just delightful. She was working at an art exhibition space in New York. It was seven floors. It's a historic landmark it's an old silo. And she has cerebral palsy so she could get up and down the stairs once or twice a day but after that she was done, and the art didn't really start till the second floor. And so Shannon started quickly realized like other people were showing up to this art exhibition space and they were also not able to access the upper floors. And so Shannon realized she had two choices. The first was that she could raise hell and really stigmatize herself in the space by demanding an elevator which she was not going to get, because, again, this is a historic landmark. The other thing she could do is that she could get creative. And so what she did was, as she saw that underneath the stairs they had this open space and she asked him if she could have it. And you can go on her Web site and see this. She cordoned it off and she created this hilarious font made of stairs and it says Anti-stairs stairs club lounge. You go in the Anti-stairs club lounge and on the wall is suddenly realize she's making fun of people who go upstairs because it says the higher you climb the farther you fall. And you look around the space and there's refreshments and there's her favorite candy and there's disability studies literature but I mean it's all impeccably branded like it's just this amazing adorable space. And the thing that was so interesting was is what I heard was it at the end of that first summer there were actually days when more people went to the Anti-stairs Club lounge than went to the upper floors. So she rendered the rest of the building obsolete. And so this is what I mean by honoring the friction of disability. Like we don't actually consider right things like what we call crip humor, where the disabled person maintains agency in the joke. We don't consider you know disabled sexuality. We don't consider the fact that a disabled person may not actually want to be brought into normal but rather they may actually feel very valuable in their lives exactly where they are and maybe they feel that they have something to offer from that space. And instead what we're doing is we're trying really hard to bring them into our space. You know I almost see it as like a land grab, like, we're going to we're going to own this space. And so that's really my focus.

NY: I know that you're also the founder of something called the Disabled List that's described as engaging in disability as a creative practice. Can you tell me a bit about that?

LIZ JACKSON: Yes. So it's me and my partner Alex Hegard. Alex is a Canadian who you would love. Alex is developing this idea of again disability lead design, is what they call it. And what we're doing is we're really looking at disability from a speculative framework, not just asking what is it that a disabled person needs but what is it that a disabled person actually wants. We collaborate. We consult. We have a separate Web site that we call Critical Axis. It's criticalaxis.org. And what we've done is we've created a repository of disability representation in media because the thing that we realized was is that when a designer gets a brief around disability and design, when they actually search the term disability and design the things that come up are not actually disabled people speaking about their understanding of it, but rather what comes up as the ways that brands depict their interactions with us. And so we felt that if we could get brands to understand that their depictions of us are playing in really harmful tropes, then we could shift the stories that are told and then shift what designers do when they receive design briefs. And what we didn't realize going into it was, well, what we started doing was as we started counting the amount of words that disabled people spoke in each ad and then we went onto YouTube and we would categorize and analyze the comments. And so one of the trends that we've started to glean which is actually really frightening to me is that the more words a disabled person speaks, the less believable the ad is perceived to be. And so through this actual creating of a dataset and this repository we're starting to understand and be able to strategize and figure out how to make these shifts. So it's a matrix of tropes. There's another trope that's called the Diversity trope and there's nothing in the diversity trope because there are yet to be any ads that feature a disabled person of color. It's as though advertisers don't think that you know black disabled people exist. And so it's been sort of wildly exciting and infuriating at the same time because like now we feel like we have something that we can use. And it's just, it's horrifying to realize Oh okay. Like this is what we have to work from. But what I do know is that this community of people, like, whoever it is that's really focused on this space of disability and design is growing. Youknow we're just doing the best that we can.

NY: Yes. So how do we get to a point where there are more designers with disabilities engaged in disability as creative practice as you say rather than non-disabled designers thinking they can design for people with disabilities? How do we change the equation there?

LIZ JACKSON: Yes. I fundamentally think it actually just goes back to incorporating Disability Studies curriculum in design schools. You know for me, when you kind of work your way through the process the thing you realize is it's like, okay, not only are you creating a space for disabled designers and non-disabled designers who are taking an interest in disability, you can only be created a space for them to actually meet and start to work together and meet each other's needs. What happens is once they've worked together a few years, by working together they then enter their professional careers not thinking that disabled people are designed for it, but actually thinking disabled people are designed with. And so I actually that's fundamentally what I think is the start of the process, is how do we start to cultivate this new way of viewing disabled contributions to design and how do we nourish it and how do we start to attract more disabled people to design. It’s got to start somewhere. And it's just it's going be a slow build.

NY: Liz thanks so much for talking to us.

LIZ JACKSON: Thank you so much I appreciate it.

NY: Liz Jackson is the founder of the Disabled List.

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NY: You’ve even listening to Spark. The show was made by Michelle Parise, Kent Hoffman, Adam Killick and me Nora Young and by Bess Williamson, Amelia Abreu and Liz Jackson. And from the Spark archives, excerpts from a 2016 doc by Michelle MacCallum and a 2017 interview with Meryl Alper. Go to cbc.ca/spark to subscribe to the podcast or download the CBC Listen app and you can always find us on Facebook and Twitter where we are, Spark CBC. I'm Nora Young. Talk to you soon.

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