Who Is Worthy of Choice?
Stereotypes can influence public opinion and, in turn, how both the public and private sectors react to and interact with older adults and individuals with disabilities. In her keynote presentation, Liz Jackson, the founder and chief advocacy officer for the Inclusive Fashion & Design Collective, focused on stereotypes in the design industry and the limitation in design choices, particularly for individuals with disabilities.
Inclusive Fashion & Design Collective
Jackson began by comparing the worlds of aging and disability to cheeseburgers. “They are my favorite food,” she said. “Every time I eat a cheeseburger, I wonder to myself who was the person who decided to grind up meat only to smash it back together and grill it.” In the same way, she argued, aging and disability have been pulled apart and separated for so long, but we are beginning to realize that they are actually stronger together. “I believe our convergence can be equally game changing. We’ve just got to find our cheese.” Jackson said that for her presentation, she would use the term “disability” to encompass both aging and disability, saying that both are “searching for beauty and dignity in the face of stigma.”
THE SOCIAL MODEL OF DISABILITY
“I am disabled, not by my body, but by the world around me,” Jackson said. The social model of disability adopted by the United Nations in 2006 describes persons with disabilities as including “those who have long-term physical, mental, intellectual, or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others” (United Nations, 2006). This definition is important, she said, because it puts the emphasis “on design rather than on our bodies.” Jackson continued:
We draw upon a history that did not exist before industrialization. Industrialization created an expectation that bodies should be able to perform rote or mechanized tasks. Those that couldn’t were diagnosed by doctors and philosophers at the time as disabled. Disability quite literally meant inability to contribute. This was the birth of the medical model of disability, which cast blame on the bodies we were suddenly disabled by. But we now live in a post-industrialized era. Eleven percent of our college population is disabled. We are an emerging $8 trillion market the size of China. Yet, the medical model lives on. Why? I believe it comes down to that moment in each of our childhoods where we see somebody who looks a little bit different than us. We eye that person curiously until mom or dad says don’t stare. We reflexively look away, never to look back unless we are confronted with it.
LEARNING TO NOT LOOK AWAY
On March 30, 2012, Jackson woke up to a complex neuromuscular condition and landed in the hospital. She admitted that when she left the hospital, she had difficulty reconciling the things she had always attributed to disability and the person she had become overnight:
I thought disability was the kids at school who had never made it into my class. I thought it was my great-grandmother in her final years. I thought it was injured athletes or the commercial, I’ve fallen and I can’t get up, accessible signage and inspirational memes. These examples had something very important in common. They were moments so fleeting they captured me before I could look away. So, I began to wonder what if disability wasn’t the things that I was seeing, but rather the things I had learned to avoid? Even further, what if disability wasn’t the things that I had learned to avoid, but was actually my own act of avoidance?
Jackson noted that many people who could benefit from hearing aids opt not to use one because they are so expensive and stigmatizing. Furthermore, she said, hearing aid companies often create marketing campaigns each using the same word: discreet. Invisibility is not the
answer to solving stigma issues, Jackson said. “The thing is we need to stop assuming invisibility and, instead, making it a choice.” For example, recent legislation will create a category of hearing aids that are considered consumer products rather than medical products, and she predicted that this will increase choice by increasing competition in the marketplace. Baby boomers are adding to the market every day, she continued:
Richard Donovan, the CEO of the Return on Disability Group, reminds us that boomers are the ones who created the teenager. They rewrote middle age. Now, they are entering their later years with an expectation of choice. This is why this moment in time is so important. Disability is empowered. Boomers are unwilling to settle. We need to come together and demand better and ask hard questions. And when better can’t be demanded, we’ve got to do it ourselves.
Jackson described how shocking it was to go cane shopping after she got out of the hospital. “There were, quite simply, no options. Yet, there was an endless array of eyeglasses for me to choose from.” Eight months after she got sick, Jackson discovered “a beautiful purple cane that changed my life.”
I will never forget the first time I rode the subway with my new purple cane. This woman got on and she sat across from me. She gave me the up and down. I thought I knew what was coming. I thought she was going to tell me to feel better, ask what’s wrong, tell me she is going to pray for me. Instead, she asked where I got my cane. She wanted to get one for her friend. This is the power of design. At first, I thought design was what allowed me to finally adjust to my newly disabled body. Over time, I realized that the thing I had struggled so deeply with wasn’t actually the change in my body, but the change in my identity. I, like everybody else, express my identity through the choices I make, but there was suddenly no variety. The only identity I was able to express was that of somebody who could not choose.
Soon after finding the purple cane, Jackson said, she felt more empowered and resilient than ever, and therefore she decided she needed a superhero alter ego. In a nod to the movie The Girl with the Dragon Tattoo, she, and her subsequent blog, became The Girl with the Purple Cane.1
1 For more information, see http://www.thegirlwiththepurplecane.com (accessed November 28, 2017).
WHAT MAKES A WHEELCHAIR A WHEELCHAIR?
Jackson uses her blog to ask why things are the way they are. For example, what makes a wheelchair a wheelchair? Many daily items have wheels and chairs, including cars, bicycles, and office chairs. Jackson approached a friend, Amanda, who is a mother and uses a stroller, and Amanda’s father, David, who uses a wheelchair. Jackson asked each of them about what it is like to navigate the world, but used the word “stroller” for Amanda and “wheelchair” for David. Amanda’s answers were about the physical realities, but David’s answers were about the emotional impact:
Amanda: It’s not too bad. I go most places that I would like with two kids. There are a lot of places I can’t get in or couldn’t go to, but honestly, I wouldn’t want to bring my toddlers there anyway.
David: When you’re in a wheelchair, people don’t talk to you generally. They treat you like you are a child. They talk to the person with you rather than talking to you. Like when walking into a restaurant to be seated, they ask the person with you how many are in the party or the check gets brought to somebody else at the table instead of you.
Jackson then asked each of them about the options they have:
Amanda: I purchase a separate one to account for different needs. I have a jogging stroller, a get-around-town stroller, and an umbrella stroller for traveling.
Jackson interjected that Amanda’s answer went on for two paragraphs, ending with an explanation of how she has learned to use Craigslist. In contrast, David replied:
David: Insurance pays for one wheelchair every 5 years. So, you try to think of the things that you may need over the next 5-year period. Most people don’t change in that period, but because of my MS, my needs have changed greatly over time. We have had to try to anticipate how my MS might progress. In both cases we have had to go back and slightly modify the wheelchair and what it came with.
These conversations helped Jackson understand that choice requires more than opting in or opting out. Choice is not deciding between a wheelchair and never leaving home, she said. Choice is not using a hearing aid or being left out of conversation. Choice is not using a cane or risking your safety.
BRANDING AND MARKETING
The 2007 Institute of Medicine (IOM)2 study The Future of Disability in America stated that “research and experience suggest that consumer involvement in the selection process (rather than an essentially one-sided prescription by a health care professional) helps avoid later rejection or abandonment of the technology” (IOM, 2007, p. 216). Jackson added:
There is this absurd assumption, this stereotype that in disability and aging, that we don’t care what we look like. So, when somebody comes along and says, “I won’t use that; it is ugly,” it is dismissed as vanity. In Branding and Designing Disability, DePoy and Gilson say, “we often hear students articulating the well-oiled belief that the mere functionality of an object should elicit gratitude.” Because everything is for us. Our products are for us. Our charities are for us. Compliance is for us. But have you ever stopped to consider how little is actually by us? We are not viewed as experts in our own lives.
Brands have begun to see the viability of the disability and aging markets, but Jackson asserted that instead of turning to individual consumers, companies are working with organizations such as charities that represent people with disabilities. “While charities work to speak in our best interest, they oftentimes inadvertently silence us,” she said. For example, Jackson said she was dismayed to learn that the Zappos Adaptive disabled clothing line did not directly engage individuals with disabilities, but only organizations that represent individuals with disabilities. She read a quote from the marketing language she had seen: “The special needs community is no longer an ‘institutional community.’ They are out living among us. They follow trends, from music to social media to fashion. They want and deserve to dress like everyone else in their age group. Now, they can do it themselves.” Jackson argued that this language plays into the segregation of the disability community. “They seem to see themselves differently than they see us,” she said. She added that it is often thought that disability products should be designed with little, if any, aesthetic consideration.
ENGAGING PEOPLE WITH DISABILITIES IN THE DESIGN PROCESS
Jackson suggested that many individuals with disabilities do not have access to traditional career paths due to access issues and prohibitive costs. She told the story of her friend Andrea who uses a wheelchair:
2 On July 1, 2016, the IOM was reconstituted as the Health and Medicine Division of the National Academies of Sciences, Engineering, and Medicine.
Back when she was deciding on her future, she dreamt of fashion, only she couldn’t find an accessible lab. My mentor often muses that design students design for small spaces because they live in small spaces. We design for what we know. We can’t design for what we don’t know. Designing for stereotypes doesn’t do anybody any good. I often wonder what could have been had Andrea found an accessible lab.
The 1997 IOM report Enabling America: Assessing the Role of Rehabilitation Science and Engineering called for consumers with potentially disabling conditions to be involved in research and technology development and dissemination. However, Jackson added, “I am not entirely sure that the National Academy of Sciences is fully aware of how game-changing our innovative solutions tend to be. We are the original life hackers.”
Jackson asked the audience if anybody used Finger Works; only a couple of hands were raised. She then described Wayne Westerman, a man struggling with carpal tunnel and tendonitis who decided to create a technology that would allow him to continue working. In 1998 he created Finger Works, which was purchased by Steve Jobs in 2005. It is the touchscreen on your phone. Jackson asked the audience a second time, “Who here uses Finger Works?” Every hand was raised. Jackson cited other examples:
In 1655 a Nuremberg watchmaker and paraplegic named Stephen Farffler created something he called the manumotive carriage. With it, he accomplished two things. First, he created the first ever self-propelled wheelchair. Unbeknownst to him, it was the precursor for the modern-day bicycle. Remember Richard Donovan from before, the guy who is so meticulously tracking the disability market? He has cerebral palsy. This is why non-altruistic support is so important. When disabled people are invited to the table, we tend to find solutions rather than seeing our bodies as the problem.
The phrase “nothing about us without us” is important, Jackson said, because when disabled people are finally able to articulate their desires, oftentimes the first thing that goes is “what the doctor ordered.” She concluded:
My purple cane was my choice. It was mine as a consumer. I recall trying to decide between the turquoise cane and the purple cane. I remember thinking the turquoise cane was the most dapper option for my handsome physique, but the purple cane captured my heart. It was this moment of gut instinct for the first time, when it stopped being about my body and it finally became about me.
Fernando Torres-Gil of the University of California, Los Angeles, thanked Jackson for voicing the frustration that individuals with disabilities have because of the lack of choices for assistive devices. He asked how people can influence business, manufacturers, and even government to create more appealing options. Jackson said the answer lies in asking, “How do you extend the range of normal?” She said that people tend to think of a bell curve where there is disability on one end and superability on the other end. Instead of having a small peak at “normal,” she said, what is needed is an extended range of “normal” that allows for individuals to express their identities, including their various levels of function.
John Auerbach with Trust for America’s Health asked if there are good examples of companies or governmental organizations that have, in an authentic and meaningful way, involved individuals with disabilities. Jackson said there are a lot of great examples, but she said that she didn’t want to say that one particular company did it “right” or did it “wrong.” As an advocate, she said, she would find it difficult to name any company that got it exactly right in her eyes, because “I see it so specifically; I am always going to find that thing that I want them to improve.” She said that it is better to focus on the idea that what everybody needs to be doing right now is approaching disability and aging “and really allowing us to drive the conversation and stop saying that something is done for us, and it is really with and by us.”
Charlotte Yeh of AARP Services, Inc. reinforced the importance of choice and the opportunity to reframe disability. Yeh said that since being hit by a car 5 years ago, she has had to relearn how to walk and that in spite of being told she would never be able to walk without a walker or a cane, she has learned how to ski and scuba dive. She has a cane for biking and a cane for the beach.
What I really want to underscore is how you captured those feelings. When I first went out with my walker and an ordinary cane, everyone was coming up and they said, Oh, don’t bump into that little old lady. Oh, can I help you? Can you sit down here? I am thinking “I am standing. This is the most exciting part of my life.” I would go out, and I would come home and go, “I must be really sick.” I would come home feeling terrible about myself.
While at home, Yeh would forget where she left her cane, so she started putting a red ribbon on it. This was followed by a flower, sparkles, and other things. After that, the reaction was completely different. People said, “That is the coolest thing ever! Where did you get that?”
I have conversations with total strangers all around the country, in elevators, in stores, people taking photographs not of me, but my cane. It is about attitude and reframing. We have to stop looking at assistive devices as disability, but creative expression. It is who we are.
Jerron Herman, who has cerebral palsy and is a principal dancer with Heidi Latsky Dance, a physically integrated dance company, emphasized the concept of variance. He asked Jackson to expand on how the market can approach different kinds of disabilities not as singular or unilateral, but as a hodgepodge. Jackson noted that most disabilities are completely invisible, so incorporating disabilities into a business plan does not have to be overt. She noted, for example, that for people who are overly reactive to stimulation, companies can modify clothing through their choice of fabrics and construction, such as by eliminating seams. She also emphasized that the disability community does not have to be pitied and that collaborations between people with disabilities and the fashion industry can create “super-cool fashion.”
Margaret Campbell of Campbell & Associates Consulting noted that the National Institute on Disability, Independent Living, and Rehabilitation Research funded much of the research that created both the social model of disability and universal design principles. She said that it was “incredibly exciting” to see how Jackson was translating and using these concepts in her own work. Campbell asked how these concepts play into choice. Jackson started by saying she struggles with compliance, which creates a minimum standard or checklist and does not inspire design. She agrees that compliance is needed for those who do not understand disability and those who are not thinking about it, but she said that she would like to see companies who are committed to disability be allowed to focus on innovation. Jackson said that access has been the root of the disability conversation up until now, but that to make the conversation just about access reduces what disabled people are capable of giving, which can affect all of society. Both compliance and innovation are needed, she said.
Kenneth Brummel-Smith of the American Geriatrics Society asked if there is a way to reframe the natural inquisitiveness of the child who stares, but whose mother tells the child to look away. Jackson agreed that people with disabilities are often “objects of gaze” and that the question of when it is acceptable to look at someone is confusing for everyone. Fashion designers have begun using models with disabilities to show products other than disability-related ones, Jackson said. She reflected on her concept for an art project in which participants are challenged to think about how they look at models with disabilities. The idea would be to have an audience interact with these models before a fashion show and
then afterward have the audience reflect on how they were challenged to first “not stare” (before the show) and then to purposefully look at the models (during the show). Jackson concluded, “Nobody learns how to look. I think that is one of the big hurdles we are up against right now.”
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