To read about the rest of the Culture Shifters, including TV executive Jasmyn Lawson and spiritual adviser Emilia Ortiz, return to the full list here.

Like many disabled people, Emily Barker has been in survival mode for far too long.

The COVID-19 pandemic has devastated millions of lives for more than a year, with disabled people dying at disproportionate rates and, more recently, being skipped for vaccines. Barker, a Los Angeles-based conceptual artist, believes it’s a result of the same system that has discriminated against people with disabilities for decades.

“The general public still has no idea what is actually going on for people with disabilities and doesn’t understand we have nothing to overcome due to our disabilities but have to overcome constructed societal barriers,” Barker, who uses they/them pronouns, told HuffPost.

Barker should know. They were diagnosed with paraplegia at age 19 and complex regional pain syndrome at 20 due to an accident. During the pandemic, they have faced eviction and multiple bouts of the coronavirus — both terrifying circumstances on their own but doubly so for disabled people with compromised immune systems like Barker. The disability activist uses their Instagram page to speak out about systemic ableism. More than 28,000 people follow them on Instagram alone.

The artist and activist was born in Southern California and grew up in Georgia. They moved to Illinois at the age of 17 and attended the School of the Art Institute of Chicago, where they studied subjects such as painting, art history and philosophy. In August 2015, they relocated to Los Angeles for the warmer weather and to be closer to friends and family.

Since then, Barker has built a career around art, modeling and advocacy. As a model — or “clothes hanger,” as they like to say — Barker has worked with brands such as Nike, Noto Botanics and Collina Strada. However, they emphasize that they didn’t intentionally try to break into the fashion industry, as both opportunities were friends’ projects.

Early last year, right as COVID-19 was breaking out in the United States, Barker had just appeared in Lil Nas X’s music video for “Rodeo,” which turned out to be a mixed experience because “the end result was cool” but “everything was completely inaccessible.” They also opened their first solo art exhibition, “Built to Scale,” at Murmurs Gallery in downtown Los Angeles. The installations included large translucent sculptures, a rug made of plastic IV tubing and a tall stack of medical bills. The exhibit challenged viewers to think about “how standardized values of scale determine social interactions because these values cannot be applied to every body type,” according to Murmurs’ website.

For the past several months, Barker has been working on their latest project, “Moving Parts.” They bought a used 36-foot RV and are in the process of converting it into an accessible living space and artist studio for themself. Barker will soon feature “Moving Parts” on Kickstarter Arts, as they plan to build more RV studios, artist residency spaces and other accessible housing for disabled people as part of the project. The idea is that each space would be built specifically for the occupant and tailored to their access needs.

With “Moving Parts,” Barker said they want to show that “accessibility can be affordable and beautiful.” Given that less than 1% of all housing is wheelchair-accessible, they said a more accessible world would be “life-changing” for disabled people like them who are constantly struggling to find spaces that are actually navigable and livable.

Barker is a staunch disability rights advocate both online and offline. On social media, they regularly call attention to the discrimination and mistreatment of disabled people — whether it’s inaccessible public transportation or the health care rationing that has restricted disabled people’s access to treatments during the pandemic. They’ve also been involved in mutual aid projects that help other disabled, elderly, BIPOC (Black, Indigenous and other people of color), and other intersectionally marginalized folks in need of support.

“The biggest obstacle is still willful ignorance and how far away we are from change due to people’s attitudes toward disabled or chronically ill people with the most needs who are less able to voice those,” said Barker, who uses a wheelchair. “I have to work 100 times harder than other people to navigate space, survive, afford basic necessities, get medical treatment and do anything like get groceries.”

Through their artwork and activism, Barker is helping to fill gaps in disability awareness that shouldn’t exist in the first place. Like other industries, the art world still has a long way to go before it can call itself truly inclusive, they said, pointing to troubling instances such as Flux Factory’s 2018 art residency for disabled people, which took place in a building that was not fully wheelchair-accessible. Such failures cast a glaring light on the disparities that exist even within the disability community, Barker said. Certain disabled people are afforded opportunities while others with more access needs become excluded.

Before systemic change can happen, the artist said, brands and companies have to go beyond simply representation. Inclusion means constantly asking who’s being left out — and then rectifying that. It means ensuring that disabled models, artists and other workers are compensated for their labor. To Barker, it’s not enough for disabled people to just be visible, especially when the result is tokenization or inspiration porn, in which people with disabilities are portrayed as being inspiring solely because they’re disabled.

“Under capitalism, everyone has an incentive to use you for free to showcase how great they are, then discard you once you’ve done a lot of free work, educated them and served your purpose in making them look ‘woke,’” the activist said, adding, “I don’t think allyship is a real thing. People either show up and do the work or they don’t.”

Barker’s favorite fashion shoots and projects are the ones that were accessible and paid them fairly. It’s unfortunately a low bar, and Barker said making accessibility the norm — and creating social change in general — requires direct actions such as protesting, striking and implementing policies that allow disabled people to meet their basic needs and live independently (such as passing “Medicare for All” legislation).

In the meantime, Barker plans to keep using their platform to help support other disabled people and continue creating art about their life and the structural barriers they’ve had to face. They are in the process of completing an art residency called LANDxAIR: Werkartz to work on “Moving Parts,” the accessible RV studio, and other projects.

“I have no lack of pieces I want to make. The list of things I seek to do is pretty endless and extends past art,” Barker said, calling themself an “ideas machine.”

Barker said they’re grateful for the opportunities that have come their way and that they still manage to remain present in the moment and create joy on a daily basis — not in spite of, but because of their experiences as a chronically ill paraplegic.

“I feel like my pain and paralysis has turned me into a force of nature,” Barker said. “I don’t want anyone in my situation experiencing what I have had to in order to survive, and that energy, knowing my own resilience, allows me to keep doing this work, which brings me hope.”