Liz Jackson is leading a revolution in inclusive design by rethinking disability as a branding problem: “We are disabled not by our bodies, but by the world around us. It is a social construct. Disability is nothing more than a brand, the world’s ugliest brand,” says Jackson. From problematic “inspiration porn” to the lack of disabled people involved in the industrial design process, Jackson’s talk is a powerful call to action for all designers.
After a chronic neuromuscular diagnosis in 2012, Liz Jackson began to wonder why her eyeglasses were fashionable when her cane and all other assistive products were stigmatizing. This epiphany, spurred Jackson to found the Inclusive Fashion & Design Collective; an ecosystem of products, ideas and people who prioritize the exception rather than the rule. The IFDC’s mission is to increase the impact of beautiful, functional products in our everyday lives and in the global economy by supporting designers and retailers in the making and marketing of products for all needs.
Jackson — sometimes known as the ‘Girl With the Purple Cane’ — and colleague Sinead Burke have spoken everywhere from TED to the White House on inclusive design.
As I adjusted to my newly disabled body, I pulled from what I knew. The kids at school who somehow never made it into my class, my great grandma in her final years, injured athletes, the HurryCane commercial, “I’ve fallen and I can’t get up,” accessible signage, and inspirational memes. I pulled from moments so fleeting, they captured me before I could look away. Because I was trained to look away. We all are.
There comes a moment in each of our lives where we see somebody who looks a little bit different than us. We eye that person with wonder and curiosity, until mom or dad says, “Don’t stare” and we reflexively look away, never to look back. Unless, like me, we’re confronted with it. Some of us are born with it. For some it happens gradually. For me, it took a moment. My moment happened on March 30th of 2012. I got out of bed to let my dog out and instead of landing on my feet, I landed on my ass. It’s amazing how much convincing it took to get me to the ER. Before hailing a cab, I crawled to the local bodega to buy a Diet Coke. I was addicted at the time. I also got a banana because I thought it would help, and off I went. [LAUGHTER]
When I got out of the hospital, I needed eyeglasses and a cane to get around. It didn’t take me long to start wondering why my eyeglasses were fashionable when my cane was not. So, I did what I do and I asked my favorite company, J. Crew, to sell a cane. I thought it was a great idea. They did not. I was persistent. They were too. I wrote them for years. They never responded and eventually, I moved on. [LAUGHTER] Given the fact that disability is an emerging eight trillion dollar market, the size of China, and we have more disposable income than any other consumer group, I selfishly set out to change this. I want cool shit. I want choice, and so I created the Inclusive Fashion and Design Collective.
In 2016, a car company decided that they were going to make some carbon fiber wheel chairs for the Paralympic Games in Rio. Not long after, I had the opportunity to ask them if they would take what they had learned and use it to make wheelchairs for everyday users. I was disappointed by their evasive response. They weren’t designing for us; they were designing to inspire you. Instead of seeing the value of our needs, they saw this as a brand enhancer. The late, great Stella Young, called this phenomenon inspiration porn. We never benefit from our bodies. You do. And instead of getting technological breakthroughs, we have to do things like cut a slit into a tennis ball to steady the feet of our walkers. A tennis ball. It’s interesting when I’m not looking at disability through the lens of fashion and design, I’m looking at it through the lens of sport. It’s always so interesting how interchangeable athletic and assistive are. I mean, who do you think is wearing athleisure? I actually pulled this from a click hole article titled “Finally, Nike is rolling out a line of athleisure for when you’re sick that looks like your high school tennis team’s sweatpants, and a t-shirt from an old career fair.” So athletes get cool gear. I love Cam Newton. [LAUGHTER] But products made for us are downright ugly. They’re quick solves that don’t evolve. The collapsible wheelchair hasn’t changed since it was invented in the 1930s. And hearing aid companies cling to the word “discreet” because instead of designing something beautifully, they opt instead, to hide it.
And I can’t help but wonder if universal design is actually contributing to the problem. Universal design was defined in 1997 after two years of architectural innovation. And two interesting things happened. First, of the seven principles of universal design, not one even talks about beauty or aesthetic or emotional connection, which is a bit awkward when you stop to realize that for design to succeed, form must meet function. Second, I believe it created a system for failure. Universal design is an architectural framework. It’s a lot easier to remove barriers in large spaces than it is in object we hold in our hands. I mean, some of us don’t even have any hands. There are people on this planet who are allergic to water. There will always be an exception. And I wonder: how powerful would it be if, whenever we designed a new solution, we also acknowledge that we too are designing a new exception.
It has been so nice to see companies start entering this market. Tommy Hilfiger made an adaptive children’s line. LEGO made a wheelchair. And American Girl made a doll. Notice the theme? All of these products are made for children. And it worries me that entering this market through children will only serve to further infantilize us. We are not consulted in these products, nor are we deemed experts in our life experience and it creates a paradigm where disability design is either rudimentary or elementary. That being said, children do teach us something very important. They teach us that our rudimentary designs need to be played with. And disability design has a fairly extensive history of inspiring play. The fidget spinner is nothing more than a rebranded tool the autism community calls a “stim toy”. Who here uses FingerWorks? Nobody? In 1998, this guy, his name is Wayne Westerman he was struggling with some tendonitis and some Carpal Tunnel, and he decided he was going to create a technology that would allow him to continue working. So, he created FingerWorks. In 2005, Steve Jobs bought that technology. It’s the touchscreen on your iPhone. Who here uses FingerWorks? [LAUGHTER]
Ever gone for a stroll n a wheelchair? You sure? In 1655, a Nuremberg watchmaker and paraplegic named Stephan Farffler created something he called the manumotive carriage. And with it, he accomplished two things. First, he created the first ever self-propelled wheelchair, but second, unbeknownst to him, it’s the precursor for the modern-day bicycle. The same can be said about audiobooks which were created for veterans coming back from World War One, email for deaf people, and we’ve all seen captioning peppering our Facebook feed. This is the power of disability ingenuity. And so it strikes me as a bit misguided that companies are trending toward adaptive design for disability. It seems to me, if you design something with intent, it won’t need to be adapted. Adaptation happens at the end of the design process even after it’s been completed. But disability ingenuity is the spark at the beginning.
Social media has given rise to a newly empowered disabled voice. My friend Lawrence Carter-Long likes to say “disability’s no longer just a diagnosis; it’s a community”. And we ascribe to the social model of disability. So, there’s two primary models of disability. There is the medical model which I’m pretty sure everybody here ascribes to which states: we’re disabled by our bodies. And then there’s the social model which states: we are disabled, not by our bodies, but by the world around us. Disability’s not medical. It’s not impairment. It is a social construct. And it is this social construct that positions us as pitiable or inspirational. It is this social construct that positions us as objects of charity. It is this social construct that expects that we must either overcome or succumb; that we cannot just exist. Disability design theorists Liz DePoy and Stephen Gilson argue that disability is nothing more than a brand. The world’s ugliest brand. And perhaps it’s time for a global identity changing rebrand.
To be explicitly clear: disability is designed. And the things that you’ve historically seen as markers of disability, namely poor design, they’re changing because of us. And we’re more interested in the functionality of the product, than the ability of the user. And we want you to know that we don’t want to be fixed. We want things fixed. We don’t want our diversity and identities eliminated; we want access and equity.
The standing wheelchair is an excellent example of fixing a person versus fixing a thing. The standing wheelchair implies that a sitting body is defective. I actually find the marketing a bit defective. They’re literally selling a standing chair. But imagine a quick narrative shift to a technology that extends one’s reach, and empowers the user regardless of ability. That’s the power of disability ingenuity. Who wouldn’t want that?
So, I’m an advocate. I advocate for the dignity and humanity of good design. And it didn’t take me long to realize that I actually don’t know a thing about design. I went to school for TV production. So, I decided to cobble together a world class design education. I first met Pradeep Sharma, Provost of RISD after a talk he gave. I said something along the lines of “You’re wrong” to him and he responded in his astoundingly gracious way and he’s been supportive ever since. Pradeep is the first person I’ve heard convey my ideas using his own words. What Pradeep taught me is that, yes I may be an advocate who sees the necessity of your discomfort, but I also am a designer who is bringing ideas to life. What this all comes down to is Pradeep and others have taught me that, you know, I really do need to spend more time focusing on play and Pradeep’s validation opened the door to play.
And then there is Rie Norregaard. Rie has a studio session tomorrow. I highly recommend it. I thought it would be fund to kind of make a game out of it, you know, since we inspire play and all, and so, if you see me following somebody awkwardly around, that’s Rie. Rie taught me that play inspires play. Rie taught me this before I ever even met her. About eight months after I first got sick, I discovered a beautiful purple cane that changed my life. I met the designer Rie two years later, and what she said to me was she was picturing somebody like me when she designed this cane. And design did what it should do. Because I started designing too. I made leather cane belts for my bike. It’s like always so hilarious, like I ride in strong and then hobble away and people are like “What just happened?” [LAUGHTER] And I’m also now filming a slow action thriller with a GoPro on my cane. [LAUGHTER] Say hi!
And, then there’s Seth Godin. Ah, he’s so lovely. Early in Seth’s career a designer, a mentor said to him “You’re going to accomplish so much if you just accomplish something.” Seth reminds me to live in the moment. He assures me that I haven’t fallen behind. And Seth is helping me create a safety net for myself so I can continue to focus and make progress. And if we’re going to play, safety is key and this is Seth’s greatest gift. Finally Liz DePoy and Stephen Gilson are disability design theorists out of the University of Maine. They’re knowledge of disability design is unparalleled. Sometime after creating the website for my organization, I showed it to a mentor, and it’s this picture of a beautiful woman with a walker. And he said that he didn’t think that the picture on the main page quite worked. And I asked why. And he said “She’s too beautiful.” Remembering that disability is the world’s ugliest brand, I asked “Well, would you rather she be ugly?” And we both stopped to think and I had an epiphany. So, I reached out to Liz and Steph and I said, “I don’t think I’m going to show people in my work.” And he asked why. They asked why and I said “I don’t want to predetermine who something is for.” And they said “Keep reading our book, Branding and Designing Disability.” So I did. In it, when I got to the chapter on accessibility signage, they described bicycle signage. You never see a person on a bike. But when it comes to accessibility signage you always see a person. In a wheelchair, with a walker, with a cane. And what it does, is it stigmatizes that space that people are using. It says you can’t use the space unless you are that person. What Liz and Steph argue instead is, is that accessibility signage should actually describe the space instead of the user. That way anybody can use it when they need it. And this is actually how you tap the disability market. You describe the space, not the user.
Liz and Steph are a loving married couple who pillow talk disability design. I think it’s the most romantic thing in the world. [LAUGHTER] Our shared interest in the space has allowed us to learn and grow because of each other. And that is why we play: to learn and grow. What this all narrows down to is, I’m trying to do something. I don’t yet know, or, I know what it’s going to feel like, I know what it’s going to do, but I don’t yet know what it’s going to look like. And this is what mentorship does, is it provides a variety of frameworks and viewpoints to bring that thing into focus.
It’s always so interesting because somehow my mentors relish in this, in the unknown. I think perhaps it’s because they’ve been through it before so they’ve just kind of have grown accustomed to it. I’m on this stage today to teach what I know, to provide insights. But I’m not entirely sure yet what I have to offer. I’m only just now figuring out how to implement my ideas. So often success feels like failure. Growth feels like pain, and when people tell me I leave them feeling inspired I often times feel dismissed. But on a few occasions, perfect strangers have approached me and spouted my ideas as though they were their own. And I suppose this is what I’m learning. In our hands, and in our hearts, we have the ability to take something from not existing, to existing. Right? And it’s not always clear when that shift takes place.
And so, if it’s not the transition into existence that marks our success, perhaps it’s the journey. Rie often tells me that you need both ability and motivation to get something done. People with disabilities are the original life hackers because our motivation is so high. If we don’t hack we often go without. If you’re here today, chances are your ability’s probably pretty high. And I’m sure you’ve thought to yourself “It would be so much easier if..” and then it falls away. Your motivation is low. And so, I hope my talk here today will inspire you to treat yourself to a disability hack. Because I believe disability ingenuity opens the door to play, but it also makes the world go round. Thank you.