Engaging in disability as a creative practice

Transcript

1. UX Australia 2019 (AUUXAU2908A) Main Room, Day 1 – 29th August, 2019 LIZ JACKSON: Thank you. Hello. I hope nobody minds if I move this computer. Because I have paper. OK, so I came from New York City all the way to Sydney to show you this tweet. (Laughter) LIZ JACKSON: I'm going to try to read it from the side, "We are super excited to introduce LEGO braille bricks. A new product from the LEGO foundation that will help blind and visually impaired children learn braille in an inclusive way." Although this tweet was a video, which I am about to show you, and while we're watching the video I am hoping you can ask yourselves, how does it make you feel? (Video plays) LIZ JACKSON: As you're watching this, are you thinking to yourself, maybe you are inspired, maybe you feel a little bit of empathy, faith restored in humanity? Do I have any blind friends in the audience? Maybe next year. If you were blind, you might say this ad makes you feel a little bit different. You may feel angry or frustrated. You might even feel exploited. Why? It's visual, right? There is no audio, how can they possibly know what is in it? It's a good ad, but it may have been about them, it wasn't for them. So who was it for? Let's check out another ad. How many of you have seen this ad when Nike signed the first ever disabled athlete? It aired a lot in the United States. Again, it is an inspiring ad. This is a runner at Oregon state named Justin Gallegos. Nike introduces him and we get four seconds into the ad when Nike tells us Justin suffers cerebral palsy. The ad was launched on Cerebral Palsy Day, and a lot of my friends suffer from cerebral palsy. They don't suffer, they live with it. Does this look like a person who is suffering to you? As the ad progresses, we learn that nike is surprising Justin with a contract. They surprising. But if you google it, you see image after image of athletes sitting at the table with a contract and a pen being treated as a professional because that is what this is, it's a professional contract. Nike didn't realise they were telling us they don't see Justin as a valuable signee. The simple fact of turning a contract into a gift tells us that charity creates value. And correct me if I'm wrong, but it is probably not the message Nike their disabled consumers. Again, if you watch the ad, you would realise we are not the intended audience. Like every body else, Nike was simply using us to inspire you. This brings me to Microsoft holiday ads. In it, a disabled kid uses the new Xbox adaptive controller. It's a good story, disabled kids should have the equipment they need to play video games. But in telling the story, Microsoft happened to erase another and what I find to be a
2. UX Australia 2019 (AUUXAU2908A) Main Room, Day 1 – 29th August, 2019 Page 2 of 9 more important story and that is how the Xbox controller came to be. There is a group of disabled gamers, and they hack and modify gaming equipment. They call themselves AbleGamers. They partnered with Microsoft to create the Xbox adaptive controller. And it has been really interesting to track their process as these Microsoft ads have rolled out, because increasingly they are feeling frustrated by the fact they are now stigmatised in gamer culture for something that ultimately led them to feel a bit infantilised. After seeing this series of ads, I decided I wanted to do something to track what was going on and the way disabled people were represented in media. So I called a website called Critical Access, criticalaxis.org. If you go on, you see a matrix with as many tropes as I could think of. We started and it pretty quickly got depressing. We learned that the more authentically a disabled person speaks, the less believable the ad is perceived to be. A lot of the things disabled people are doing are being detected by brands as things that are empathetically done for us. This is why disability scholars like Cynthia Bennett were so outspoken about LEGO braille bricks. Because while LEGO was positioning these as an innovation of something they created, LEGO braille bricks were created by the family of a blind man in the 1980s. And in rolling out their version of braille bricks, LEGO happened to erase the history of the ways people have interacted with LEGO kind of products, blind people. This is a continuing theme. The things we fight for our never turned into things that are not empathetically done for us. You can't get away from it. If you google the phrase 'designed for disability', it yields about 10 times as many search results as the phrase 'disability design'. What I saw as the ways we are recipients of design have embedded itself into a language. But if you think about it you realise that it is disabled people whose innovations have changed the world. Does anybody here use singles work? Back in 1998 there was a guy called Wayne Westerman. He started struggling with some carpal tunnel syndrome and tendinitis. He created finger works. And 2005 Steve Jobs bought the technology and it became the iPhone touch screen. So who here uses Finger Works? 1655, Steven Farffler, a partial paraplegic and watchmaker decided to make the first-ever manual wheelchair. Unbeknownst to him it became the precursor for the modern day bicycle. Disability ingenuity has been known to change the world and we are positioned in our language to be recipients. I decided to create something called The WITH Fellowship. We partner with disabled people and it's been a powerful experience. I increasingly encounter brands will approach me and say, "You are talking about codesign." That's what people think and talk about. I often say, "No, I'm not talking about codesign, WITH is the antithesis of codesign." So what's the difference? With codesign the institutions decide when and how the disabled
3. UX Australia 2019 (AUUXAU2908A) Main Room, Day 1 – 29th August, 2019 Page 3 of 9 people get involved. The WITH Fellowship, early on, I made a rule that I wouldn't tell stories of the fellows to validate the work we're doing in the space. We deal with exploitation in disability and I didn't want to perpetuate it in any way. About two months ago one of the WITH fellows was asked to speak on a podcast and they recommended that I also speak. I thought it was both of us, so I would tell a story I had been dying to tell about this fellow, and I won't tell you. It was interesting. I told this story and what I didn't realise was that they had interviewed the WITH fellow before they interviewed me but I didn't realise they had interviewed her again. When I heard the podcast once it aired, I put my head in my hands because what they did is even though she was the person they initially approached, they ended up making her an example of my good deed. There are very few ways we can talk about disability except for talking about disability. And I suppose this is why I started my design talk by talking about the ways brands depict their interactions with us. Their stories generate headlines and appear at the top of search results, only to be discovered by another design researcher equipped with a client brief and some good intentions. If you ever get the chance, google 'disability good intentions'. The researcher will take note of a good thing that LEGO did. And Microsoft didn't just make a controller, they also made a toolkit, an inclusive design toolkit. And then to back it up Nike got many views, so surely they did something right. But Nike didn't do any of it right. And this is why more than anything, disabled people need you to question the things you perceive as wholesome. Because it can have impact. Literally, you don't know when it will have impact. It could have impact this morning, this morning LEGO rolled out another braille product and in it they audio described the video and they credited the blind man, Matthew Schifrin, who created it. I didn't have a chance to put it into my talk but if you go to LEGO_group, the video comes up. This is the fight I mean, how do you get brands to do things differently? One of the main brands I spend my time trying to pay attention to is Ideal. About 1.75 years ago they asked me to come into their office to show me something. I said OK. I go in and they say, "We want to show you this technology that is intended to get disabled people hired." I asked them which disabled people they hired to make the technology. None. That led me on a journey which led to the creation of what I call design questioning. Design questioning is created in response to design thinking. Which I started through this process and seeing as problematic. If you think about it, design thinking was created in the 1960s essentially by white men who had no equals. They were the most powerful designers in the world aligned with powerful institutions. And what they started realising was that design wasn't reaching everybody. They created a system built on empathy to fill in those gaps.
4. UX Australia 2019 (AUUXAU2908A) Main Room, Day 1 – 29th August, 2019 Page 4 of 9 While I argue much good has come from design thinking it has inadvertently fuelled the narrative that disabled people are the recipients rather than drivers of design. What it does is it goes through and looks at design thinking from the user's perspective. I believe when we are able to question the systems that disable us, everyone involved will stop seeing our bodies as the problem. I will go through design thinking through the lens of design questioning. Step one, designers cultivate through observations and interviews. But if you speak to a disabled person who has been through this process, you will find that it can feel a bit less like empathy to us and more like designers are gleaning our ideas and our life packs and selling them back to us as inspirational do good without giving us credit. It makes us think of the story of Betsy Farber. There are these Oxo kitchen products with gummy tactile handles, and they are the universal design heralded example. I had always wondered about it, you hear about Sam Farber, he saw that his wife was having a hard time peeling a carrot so he decided he would make a peeler that was easier for her to use. I work in an office and my mentor is called Tucker Viemeister, I lovingly refer to him as the world's most industrial designer. He invented the good grip. I asked him one day, "Can you tell me about Betsy?" He got this look on his face, "She was a designer. Did you know that?" I said I didn't. She was around all the time. I thought about it for a few days and I was thinking I don't know any designer that would let her husband make her a peeler. I picked up the phone and called Betsy and she said, "I will go down in history as Sam's lonely crippled wife when it was my idea in the first place." That is step one. Step two of design thinking is designing the problem. Because disabled people are not involved in the process, it often becomes us that is defined as the problem. We are defined as the problem and we enter an iterative process of ideation, design thinking, which I call design 'thanking' because we are expected to be grateful for that which has been done for us. I got through this process, I had gone into design thinking, I had reached design questioning and I felt there was something pulling at me. I was struggling with the concept of empathy. Empathy wise, I feel like we lost the plot. This is Empathy Wines created by a billionaire venture capitalist, empathy wine, it's affordable. In USD they run between 30 and $40 a bottle. 50 or AU$60. I learned something interesting about empathy, you have to look at the history to understand what it is we are doing right now in design in the space. The word empathy has only been around since I think 1909. It derives from a German term, Einfühlung. What happened was there was a psychologist whose name was Theodore Lipps, he was Freud's mentor and what he realised was when a person goes into a museum and they encounter a great work of art, they may put their hand on their heart and take a step back, they might start to sway.
5. UX Australia 2019 (AUUXAU2908A) Main Room, Day 1 – 29th August, 2019 Page 5 of 9 And he realised people are physically moved by works of great human expression. He developed a term, Einfühlung, it meant physically moved by works of great human expression and it took off, this is in Germany. Eventually made its way to the US and when it did, it made its way to empathy. It wasn't just the word the change, it was also the definition. It shifted from feeling moved I works of great human expression and started to mean feeling sympathy, all we experience it in disability, feeling pity for a person's situation or circumstance. The thing that has been striking to me is in this time, as disability was shifting from pity to inspiration, at the same time empathy was shifting from inspiration to pity. I think we feel these things the same way. I believe this process is leading to 3 outcomes that we don't like to consider. The first one is that it reifies class and power structures. When you have the empathiser and the empathisee and the empathiser is the one who gets to tell the story. The second outcome is it prescribes emotions. I can't figure out how to express it better than this, I think we have started convincing ourselves that things that feel a certain way do a certain thing. But they don't. I would go so far as to say that things that feel a certain way prevent us from doing a certain thing. I don't think Empathy Wines make much of a difference. The third thing is is it silences the recipient. Where I am at right now is I'm stuck on this idea of thinking. I was at an event three months ago and Tim Brown, who was the CEO of IDEO, he is a man who has spent the last 30 years of his life popularising design thinking and was being interviewed. In the course of the interview he didn't say the phrase design thinking once. That is until the interviewer asked him specifically about him. He said, "Unless we popularise design methods and design approaches and we use the convenient term design thinking, even though it has lots of downsides but anyhow... Suddenly Tim Brown thinks the term design thinking has downsides. Of course, this is what design thinking does, it credits the thinkers. And what I realises we are told from the moment we enter our first design course, to be empathetic and to think of, to think of usability. And all the while we are being taught to think of, we are being taught something a bit different. We are being taught to think for, as though we have become these godlike creatures. And if there is something I have learned, it is this. Thinking is elitist. Think about it. No, don't think; question. Who gets to be in a think tank? Who is a thought leader? Who gets to do design thinking? And are they really doing the thinking or are we just getting credit? What is disability? Disability didn't exist before industrialisation. You would have me with my cane, you have a deaf person, and you would have a blind person. And we would be existing in our communities, contributing as we could. It wasn't always great, but we were never grouped together through the lens of disability.
6. UX Australia 2019 (AUUXAU2908A) Main Room, Day 1 – 29th August, 2019 Page 6 of 9 What happened was industrialisation rolled around and created this expectation that bodies could perform in rote and mechanised ways. And suddenly for the first time in history, there was a subset of bodies that could not contribute like the others. So industry turned to doctors and philosophers at the time to diagnose those bodies as disabled. Those bodies were then segregated and institutionalised. And at the time, disability quite simply meant 'unable to contribute', but what I argue now is that disability now means 'prevented from contributing'. The word has taught us a disabled body is nothing more than a body in need of intervention. This is exactly what designers do. We design interventions. We dedicate our careers to it. We are here today because of our commitment to this process. We are seekers who develop our skills with rigour because we often want to be the best. There is a certain glory in being a designer. So I see the natural progression, of course we are going to want to apply our highly attuned skills to something we think needs fixing. But I am somebody who straddles both sides. I am a disabled designer, and while solutions are fulfilling for me as a designer, as a disabled person, the process feels destructive. It feels like we have become a product or a topic, instead of a discipline or a craft. Where is the rigour? Design schools are starting to offer accessibility curriculum but in lieu of creativity, students are learning about disability through compliance checklists. But that is not design. Design is art, art with rules. If accessibility is the rules, whereas the art? This is where I come in, the art is in the culture, the history, the knowledge, the theory. People don't realise disability is a thing people can feel passion for and endeavour in. Disability can be a practice, a creative practice. But design schools are not fostering relationships with people who engage in disability as a creative practice, and so a culture is being created where students don't think they need to build real relationships with actual disabled people. They just need to feel empathy for us. So this really interesting thing happened during the first application process of The WITH Fellowship. One of the top design schools in the US reached out to me and said, "Would you like to see our disability numbers?" And I thought to myself, yeah. But I knew the numbers would be skewed. How are these numbers achieved? I think it's a similar to here in Australia. What happens is in order for a school to compartmentalise a student as disabled, that student first needs to go to the doctor's office, they get a note, then they go to the administration of the school, they go through a series of approvals and then self identify to the teacher. You can imagine a lot of people who have needs that want to go through this stigmatising process so they are not able to get their needs met. So these numbers are often much lower
7. UX Australia 2019 (AUUXAU2908A) Main Room, Day 1 – 29th August, 2019 Page 7 of 9 than what the actual disabled student population actually is. Going into it, I knew on average in the US 11% of any college population is disabled. That I knew. So when this school handed me the numbers, I was blown away. There are departments which are 30-40% disabled. I think it ended up being 20% of the design school had a disabled student force. I started obsessing over it. This is something I really want to study, I realised three things are at play here. First, disabled people are the original hackers. We spend our lives cultivating an intuitive creativity because we are forced to navigate a world that is not built for our bodies. That's how we came to invent the iPhone touch screen, the electric toothbrush, the list goes on and on. Of course, if you have this cultivated creativity, of course you're going to be more inclined to enter design schools. So yes, the numbers are exponentially high in the beginning. But what I believe happens, what I want to study, is what happens to the students year after year. Where are they going? I believe these are the students that are dropping out the fastest, so I think those numbers decline year after year. This is where I am stuck. Where do the students go after graduation? When was the last time you worked with a disabled creative director? Why is there no blind person in this audience? These are all questions we need to ask ourselves. And so for me, the thing I started realising is that there is a really easy solution. It is actually easy because it is not just the disabled students that are not getting their needs met. It is actually those tutors that have taken an interest in disability, who don't have access to the resources and materials to really succeed in it. It is everybody in this room that doesn't have baseline knowledge of disability. The system has failed us. What I fundamentally believe is if we start to incorporate disability studies curriculum into design schools, what happens is you create a space for these disabled students, yes, but also those students that don't identify as disabled but really want to work in this space, to find each other and work together so when the students enter the workforce, nobody thinks they are designing for anybody else, but instead they think they are designing with. To me, the solution seems so simple and obvious. And it all comes back to this really important question, what if instead of trying to smooth out disability, what if we instead developed the capacity to acknowledge and appreciate the friction of disability? I want to be able to honour the friction of my disability. I like to think that if design can start investing in disabled people, instead of trying to fix them, this work can be expansive. A couple of works ago, I was invited by a large corporation to come and check out their
8. UX Australia 2019 (AUUXAU2908A) Main Room, Day 1 – 29th August, 2019 Page 8 of 9 accessibility lab. It was in a really big building in New York City. You say the word 'accessibility lab', and you think it is going to be a lab. They built it up and built it up. I show up, it's not a lab. It's a small room. I walked in and I was like, huh. But it was a strange small room. It looked like they had cleared out a closet, stuck a couple of computers in it, and they were like, "Welcome to our accessibility lab." And I was weirded out. I just started playing. I remember they had those glasses that have the headphones on them from Bose. I started playing Lizzo. Then they have simulation goggles so I put those on and I am missing shit up. So I start blasting the music, taking over the room dancing, and while I am doing that, I am thinking to myself, what the hell is wrong with me? Maybe they want to work with me. Not anymore. But I think the thing I realised was this was not disability at all. You can't just clean out a closet, stick in a couple of things, and call that accessibility and think you are reaching disability. I think when disability finally enters the corporation, it is going to feel a bit messier. And I wanted to show them they could not constrain me. I wanted to show them this was expansive, I wanted to show them the messiness of it. So I think that's where I am at, we want the process to be clean but it is not. We are designers. As children we may discover we have a knack for design, yet we know it is not enough. We go to school and develop our skills, we graduate, we attend events like this one today, this is our commitment to our profession. And yet when it comes to disability, we often think 'we just know'. But we don't. It is a process that requires commitment and reflection. A year ago I was walking through New York City and I encountered the most beautiful bouquet of flowers I had ever seen in my entire life. And I just couldn't believe it. The first thing I did was I took this picture. The second thing I did was I was going to save it, so the cherry blossoms, they were like 6 feet tall, but there were tulips at the base. I picked up a lot of the tulips and took them into the office. I was sitting there looking at them, thinking about it, and I pulled open my phone and looked at the picture. And I cannot get over, I cannot understand, who would throw these flowers away. I need to save them. And so I hobbled back down the two blocks to where these cherry blossoms were. It was really early and I was the first person to reach it. So I tugged at a few of the cherry blossoms to see if I could get them out, and as soon as I did that, the entire trashcan fell over. I was thinking to myself, what have I done? It was so beautiful, I ruined it! No longer was it something I was going to save, now I had ruined a thing of beauty. And I had just got a brand-new leather jacket. I didn't care. I hugged that New York City trashcan and lifted it right up. In doing so, it wasn't quite as beautiful. Everything was lopsided.
9. UX Australia 2019 (AUUXAU2908A) Main Room, Day 1 – 29th August, 2019 Page 9 of 9 So I picked up the cherry blossoms I had managed to pull from it and took them into the office. I go back, still thinking about it, still thinking about it, so I opened the picture again. That was the moment I realised there was a hashtag on the ground. I opened Instagram and checked it out, it was only then I realised that nobody had thrown these flowers away. It was a public art installation. (Laughter) LIZ JACKSON: And so I started crying. I was like, who would do this? Loser! And so I did what I do, I emailed the artist and I told on myself. And I said to him, "I find myself completely overwhelmed both by the beauty and by the misguided nature of my instincts. And I hope this serves as a reminder to me, a disability advocate, that not all things need saving. Sometimes they just need to exist." Thank you. (Applause)