There are lots of conversations about the lack of diversity in science and tech these days. But along with them, people constantly ask, "So what? Why does it matter?" There are many ways to answer that question, but perhaps the easiest is this: because a homogenous team produces homogenous products for a very heterogeneous world.
Welcome to the next installment of the rebooted Design Bias, a Motherboard column in which writer Rose Eveleth explores the products, research programs, and conclusions made not because any designer or scientist or engineer sets out to discriminate, but because the "normal" user always looks exactly the same. The result is a world that's biased by design. -the Editor
Liz Jackson wanted a better cane.
Jackson, 36, founded The Disabled List in 2016, after she was diagnosed with a chronic neuromuscular condition, and has been trying to convince major fashion brands ever since to include clothing designed by and for disabled people. One might think someone like Jackson, who lobbied J. Crew to sell a fashionable cane for her to use for years, would be stoked about Zappos Adaptive, a product line launched in May of 2017 by the online clothing and footwear shop, Zappos.
Instead, Jackson felt dread.
First there was the tweet from the Zappos account promoting the Adaptive campaign using the term “differently-abled”—a phrase so often used when “disabled” is considered an inherently bad thing.
Then, as Jackson dug deeper into the promotional materials and products in the Adaptive line, including sneakers with faux laces that sit on top of a hidden zipper for kids who have trouble tying their shoes, and “sensory friendly” clothing without zippers or seams that can irritate sensitive skin, her suspicions were confirmed: this was yet another campaign aimed at disabled people without actually including them.
When Jackson spoke about her concerns with a Zappos representative she learned that no disabled people had consulted on the project.
In recent years, fashion brands have embraced using disabled models in campaigns and on the runway.
But despite the rise of disabled models on runway shows and in advertisements, according to Jackson, clothes are rarely made with those bodies in mind; and when they are, those individuals aren’t being consulted on what they actually want and need. “There’s not a single company that has invited disability to the table,” Jackson told me. “Nobody.”
“It still hasn’t occurred to people that disabled people are the experts in disability,” Jackson added.
Like other companies that launch “accessible” fashion lines, Zappos did hire disabled models for its Adaptive campaign. But Jackson says that isn’t enough—that using the face and body of a disabled person to sell a product designed without their input is exactly the problem.
Zappos did not respond to requests for comment.
“It still hasn’t occurred to people that disabled people are the experts in disability.”
This sort of portrayal has come to be known as “inspiration porn,” a phrase coined in 2012 by Stella Young, a disability rights activist. Rooted in the concept that disabled people are somehow one-dimensional, inspiration porn is what informs articles that literally begin with “So inspiring!” like the one published in early 2015 in US Weekly about fashion label and marketing company FTL MODA featuring runway models using wheelchairs.
The same piece also provided a perfect example of how not to write about disabled people: “Some of the catwalkers were amputees, while others were bound by wheelchairs or walked on canes—but they didn't let their physical ailments get in the way of making a bold political (and fashion!) statement.”
Then again, FTL MODA doesn’t make clothes. It represents fashion brands, rather, none of which actually make clothing with disabled people in mind. But it’s still worth noting that FTL MODA seemingly did not tailor items worn by at least one disabled individual in its 2015 show. As he walked the runway, one of the model’s pant legs was simply rolled up to display his prothesis. It appeared that it wasn’t even hemmed properly. (See it beginning around the 11 minute 16 second mark in clip below.)
Jackson points to a J. Crew advertisement from last October to further illustrate the point. The ad featured a boy who was born with a limb difference and is seen wearing a sweater that hangs awkwardly off his arm. J. Crew, Jackson says, didn’t put that kid (also named Jackson) in that sweater thinking another kid with an amputation might think, Oh my god, a sweater that hangs off my arm. That’s what I need!
“[J. Crew] didn’t do it for other disabled kids,” Jackson told me. “They did it to inspire their non-disabled readers.”
The example is especially frustrating for Jackson, who spent three years pitching J. Crew on a fashionable cane. The company never took her up on the idea. J. Crew did not respond to my requests for comment.
Not all disabled people agree with Jackson on this point, of course. Some, including those like Dr. Danielle Sheypuk who participate in fashion shows, argue that by walking the runway in a show like FTL MODA’s serves an important function. It shows the world that disabled people can be beautiful, attractive, joyous and artistic.
Sheypuk, a clinical psychologist, has been a vocal advocate for disabled folks' participation in this space. She made history in 2014 when she became the first model using a wheelchair to be featured during New York Fashion week. “On that day on the catwalk, I carried everyone with me with a physical disability that deserves to be recognised as glamorous and sexy,” she wrote in a piece for Disability Horizons. “That moment went viral, hopefully changing people’s minds.”
Aaron Philip has a different take. Philip, a 17-year-old disabled, gender-nonconforming, femme model, models not to inspire or make people think, but because she loves fashion and wants to work in the industry.
“I’m just a teenager trying to live my life,“ Philip told Them. “When [people] see me and make themselves feel better about themselves by looking at my disability ... that’s not my intention. I have a hustle.“ And while she's at it, she hopes to try and change the fashion industry from the inside out. “We’re being neglected in the space of beauty,“ Philip said. “[The industry has] an obligation to create spaces that are accessible, clean, open, and well thought out for people that aren’t able-bodied.“
But Jackson says brands are still sending a signal when they use disabled models but don’t include those same people in the design process—as if to say, we’re doing this for charity, not because we think you’re our target audience. Most fashion brands that feature disabled folks on runways don't go on to design clothes with disabled folks in mind, nor with disabled designers. (Jackson is hoping to change that by helping found a new project called Design With Disability, which will place talented disabled folks in three month fellowships at design firms in New York City.)
A great example of an initiative that manages to balance the two, is the hashtag #disabledandcute founded by writer Keah Brown. Using the hashtag, people share photos when they’re feeling cute. “My hope is that this hashtag helps mainstream media and other able-bodied people see how much disabled people have to offer and understand that we are more than inspiration porn and people to pity,” Brown told Cosmo.
Ultimately, Brown’s hashtag allows disabled folks to be in control of their representation in a way that runway shows and advertising campaigns don’t.
Jackson remembers when she first realized that while she could shop forever for eyeglasses of nearly any style, she was stuck with the same basic designs for her cane, which, like other products that are indeed designed for disabled people, are often medical and gray. In a word, unattractive. As Jackson likes to say, “Disability is nothing more than a brand—the world’s ugliest brand.”
After all, fashion designers now want people to aspire to not only clothing but to an entire aesthetic and narrative. Many advertisements and runway shows aren’t just selling clothes, in other words. They’re selling a lifestyle. A vibe. And it would seem that most people still don’t see being disabled as desirable, something that a customer might imagine for themselves.
Designers seem to think that there is fashion and people who appreciate it, and then there are disabled people. According to Jackson, for a long time companies simply assumed that there was no disabled market. “Everybody thinks you have to do things for us,” she added. “That we’re objects of charity, that we’re not exchanging money.”
This couldn’t be further from the truth.
Fifth Quadrant Analytics, a disability markets-focused ratings firm and index provider, estimates there are some 1.3 billion disabled people worldwide, representing $1 trillion in annual disposable income. Part of the reason why fashion brands aren’t trying to capture more of that market by thinking about or including disabled people in designs, Jackson believes, is that companies are worried about being perceived as “pandering” and being dragged on social media if they get something wrong.
Jackson says that there’s an easy solution to that problem: a company can simply include disabled people on its design team. At which point, she added, the rest really takes care of itself. “Because we’re in on it.”