With her effortless California thrift-store style and pixie haircut, Emily Barker knows how to make waves on Instagram. The 27-year-old artist, model, and actress wears clothes that fall somewhere between subtle and statement-making: semi-sheer ’90s raver tops and hand-bleached pants by upstart Los Angeles label Fear Safe. Yet there’s more to this young woman than a pretty face and stellar style.
Take a look at the description on her Instagram page: “Just another brave, inspiring, feel good insta. No critical thinking here. Empty mirror selfies just the way u like it.” It’s intentionally ironic—Barker’s stylish selfies, taken as she sits in her wheelchair, are intended not so much to celebrate the world of fashion as to challenge its treatment of disabled people.
Barker is a paraplegic who suffers from complex regional pain syndrome (CRPS), an extremely painful chronic disease. But these labels don’t define her. She is, more importantly, a beautiful, multitalented young woman with a burgeoning career that cuts across art, media, and fashion. She doesn’t want you to call her pictures “inspirational”—a weaselly word that she believes is foisted on people with disabilities, undermining the truth of their experiences. She will often write captions for her photos advocating for the rights of disabled people, rights which are often overlooked by the able-bodied.
“When I have a good outfit on, and I take a photo (and write a caption), that’s a thousand people reading a paragraph that they wouldn’t have otherwise,” she says about what she calls “thirst-trap politics.” “We live in a culture that only values the way things look at this point, so being able to derive some content and meaning from that is important.”
While Barker has appeared in ad campaigns for L.A. fashion labels 69 and Fear Safe, she is wary of brands using her and other disabled models as a Band-Aid to cover some of the fashion industry’s more deep-rooted problems. She says that the everyday issues of people with disabilities won’t be solved by “virtue signaling” or tokenism. And she says that some brands that try to appear inclusive in their casting choices sometimes don’t make the necessary accommodations to work with disabled models.
“Honestly, it’s really hard to find brands or organizations that are willing to listen—and then take into consideration—your access needs,” she says. “I don’t wear skinny short pants because I am not comfortable with my CRPS, and I can’t wear certain cuts of clothes as they get caught in my wheelchair tires, and [when designers and stylists hear this,] they’re just like, ‘Oh, this is too much.’”
Baker also emphasized how important it is to provide proper transportation for disabled models. “A lot of brands still don’t believe in even paying for rides,” says Barker. “I had an instance where a job fell through because a brand refused to pay for my transportation to this event I was speaking at, even though I modeled for them for free, and they later apologized, after I told them how wrong that was.”
Barker is fighting for a fashion industry—and a culture—in which disabled people are normalized and treated with respect, whether it’s in everyday life or on the runway. “It takes designers who are not going to make a big deal out of it to humanize the situation, and be like, ‘She is hot, she can pop a wheelie on the runway, and that is a moment, and she looks great in these clothes,’” Barker says. “It’s just asking fashion if they really want to ignore 61 million people. I’m a critical person, [but it’s] based out of love, because I want things to get better.”
Barker grew up in Chicago. Her mother, who wore demure ’90s pantsuits, was her first style icon. As a kid, she devoured fashion magazines. For a time she thought she wanted to be a designer. But as she got older, she felt more drawn to art, eventually studying painting at the School of the Art Institute of Chicago.
These days, Barker draws upon her multidisciplinary background for her activist work on behalf of disabled people. In addition to modeling and maintaining a strong social media presence, she is also the cohost of the twice-weekly Death Panel podcast, a wonkish deep dive into health care policy from the point of view of some of America’s most marginalized citizens. Typical episodes feature critiques of the health care plans put forth by the Democratic presidential candidates and takedowns of budget cuts to social programs pushed through by the Trump administration.
Barker and her cohosts don’t want to center their advocacy on their own disabilities, and for this reason Barker declines to talk about how she became disabled in the first place. She’s not looking for pity, but wants to use her personal experiences and everyday struggles to underscore the fact that 61 million disabled Americans (26 percent of the population) are forced to move through a world built for able-bodied people. Those without disabilities might never think about the fact that, to take just one example, curb cuts—the small dips on city sidewalks that allow for access—aren’t on all the sidewalks in Los Angeles, as well as many other U.S. cities.
Alongside her continuing work on Death Panel, Barker is also developing her acting career. She is set to appear in an upcoming film starring and coproduced by the Parks and Recreation actress Aubrey Plaza. She is also gearing up for her first solo art exhibition of sculpture and installation work at a new art gallery in L.A., Murmurs. “I don’t tell (my friends about the gallery show), because I don’t want anyone to have any expectations,” she says. “But I hope it’ll be pretty amazing. The material choices and the pieces are poignant and complex, so I’m excited.”
In the meantime, Barker believes that continuing to dress well and to document her style is as much of a statement as any other of her various projects. “I would not look this cute if I didn’t have a reason to represent a whole body of people that are totally discriminated against and silenced,” she says. Barker sees her Instagram self-portraits as “a kind of weapon, or at least a tool, to gain some dignity for myself.” She is shrewdly using fashion to subvert expectations of what a disabled person is supposed to look like. “I’m not expected to be dressing well or attractive in any sense. If people are going to stare at me, then I’m going to really give them something to stare at.”
Originally Appeared on Vogue