One in four adults in the U.S. are living with a disability, but you wouldn’t know it given the lack of representation in the workforce, Hollywood, and media coverage. On the 30th anniversary of the Americans With Disabilities Act, Voices of Disability celebrates the real stories — not the stigmas or stereotypes — of this dynamic and vibrant community of individuals.
In February of 2017, London-based performing arts school founder Zoe Proctor was fed up with hearing that her students with disabilities weren’t gaining access to opportunities in the same way that non-disabled people were in the modeling industry. Her sister-in-law, Laura Johnson, a social worker who often worked with people with disabilities, shared in her frustration. It was during their daily dog walk that the duo got the idea to do something about it. “I remember asking the question, ‘How are people with disabilities ever going to have a chance at success if agents refuse to work with them?’” Johnson recalls. And just like that, a plan was set in motion: “It was a lightbulb moment. We went home and started the agency that day.”
Zebedee is the first-ever modeling and acting agency to focus exclusively on talent with disabilities in the U.K. Prior to founding her performing arts school, Proctor worked as a curve model. Meanwhile, Johnson has a daughter in the modeling industry. Their experience running a modeling agency stopped there. But an empty rolodex wasn’t enough to stop them from pursuing their goal: to make fashion and beauty campaigns — which, as they stand, feature roughly 0.02% people with disabilities — accurately depict the population. “I would like that 0.02% statistic to turn to 21%,” Johnson says, 21% being the population of people currently living with a disability in the UK. In the U.S., that number is even higher, with one in four people living with a disability, according to the CDC.
Starting any new business is hard. Starting a business that’s never been done before is near impossible. But despite the initial challenges, a few months after launching Zebedee, Proctor and Johnson could tell that it was working. Both founders worked for free for the first six months in order to get a handle on the industry and gather a list of potential clients, Proctor says. By late December of 2017 — the duo had officially launched in September — it was clear that there was momentum. “As a minimum, we knew then that we could continue as an agency, be it a small one,” says Proctor.
Now, more than three years since its launch, Zebedee has worked on some of the biggest campaigns in adaptive fashion, including a 2018 River Island anti-bullying campaign, for which every model featured was represented by Zebedee. The agency’s client list also includes H&M, Marks & Spencer, Primark, and Boden. Most recently, 18-year-old Zebedee model Ellie Goldstein with Down syndrome from Essex, England, was chosen to be the face of Gucci’s color cosmetics campaign. “I couldn’t believe that Gucci had chosen me,” Goldstein says. “I was very happy indeed, and overwhelmed with joy.” Immediately following the campaign’s launch, Goldstein garnered international fame — her image raked in the most likes ever on a Gucci Instagram post, according to Johnson. It is currently at 850k likes and counting.
The model was one of the first to join Zebedee in 2017. A dancer and performer at Proctor’s performing arts school, Goldstein saw an opportunity to follow her dreams of “being a model and appearing on TV” and took it. “I signed with Zebedee because they only have models on their books with disabilities or hidden disabilities, and this was important to me,” Goldstein says. “Maybe I could show that having Down syndrome wouldn’t stop my dreams.”
Kathleen Humberstone, another model represented by Zebedee, got her start in a different way, according to her mother Denise. “I tried to contact big agencies, but the application process couldn’t even be completed online as they were asking for school education, a clever way to sift out people like Kathleen,” says Denise. “She then came across Zebedee by chance and couldn’t believe they were exclusively representing people with disabilities.” As the mother of an aspiring model with Down syndrome, Denise was wary about choosing just any agency to represent her daughter, but, soon after meeting with Proctor and Johnson, her worries were diminished. “I knew Zoe and Laura had their hearts in the right place and that their daring enterprise was not so much about money, but about representation of people like my daughter,” Denise says.
Of modeling and being in front of the camera, Kathleen says that it “makes [her] feel free, special, powerful, loved, and sexy.” Her dreams are to be a professional model for big brands and walk in runway shows in all four major fashion capitals. “I want to be on the covers of big magazines and on billboards,” she adds.
Denise is grateful for the opportunities her daughter has been given in the modeling industry. “Whenever I am privileged enough to watch Kathleen at a photoshoot, I see a completely different character,” she says. “It’s just Kathleen taking the reins of her life and becoming who she is meant to be.”
Goldstein and Humberstone are joined at Zebedee by Renee Bryant-Mulcare, a model and stylist living in Birmingham, England. Bryant-Mulcare has paraplegia and is a full-time wheelchair user. “When I was younger, I never thought it could be possible to be doing what I’m doing now,” says Bryant-Mulcare. “I never saw anybody that looked like me — in the media or fashion industry. So, to have a whole agency that is based on embracing those who have disabilities, I think is truly amazing.”
In addition to her involvement in the fashion industry, Bryant-Mulcare is following in her mentors’ footsteps by opening a business dedicated to helping those who, like her, have a disability. “I will be starting my very own yoga, fitness, and well-being classes for other individuals who have disabilities,” she says. “This is something that I came up with after thinking to myself, What was missing for me growing up with my disability? What could have perhaps made it easier for me to accept myself?” Her answer: representation.
But too often, young people with disabilities — including Down syndrome, Muscular Dystrophy, ALS, and Multiple Sclerosis, and amputations — aren’t given the chance to prove themselves in the modeling industry, among other industries. “People with disabilities need to be recognized and represented in the best possible way because historically people who have a disability have been left out of the diversity debate,” says Proctor. “People with disabilities are still the largest and most underrepresented minority group in the media and fashion industries.”
Proctor and Johnson point to a couple of reasons for why they think that is. “It seems to be the last thing that casting directors and brands think about,” says Johnson. “Sure, companies want their campaigns to be diverse. They want them to be inclusive, to represent the population. But still, disabilities don’t show up on people’s radars, which I think is more of a long-term, systemic problem.” Other reasons that Proctor and Johnson have encountered are that some brands think customers don’t want to see people with disabilities in campaigns or worry that if they do include people with disabilities in their campaigns, that they’ll be criticized for tokenizing them or perhaps get the language and imagery wrong. “They worry that it might affect the money that they bring in, too,” says Johnson. But the biggest issue of all is that many companies, according to Johnson, have never had models with disabilities put in front of them. “For a long time, we thought, What are we doing wrong?” she says. But after submitting their models time and time again for potential projects, as well as cold-calling and emailing casting directors to insist that they let Zebedee models and actors audition, directors finally started to give in. “I think they just got sick of us,” Johnson says. “But also, I believe that brands are finally starting to realize the value in including people with disabilities in their campaigns.”
In the U.S. alone, the collective spending power of people with disabilities is $490 billion, according to Vogue Business. But economic value isn’t the only reason why brands should consider hiring models with disabilities. In her experience, campaign viewers want to see real people — “people who they can feel some affinity toward” — in campaigns, even more so now than before the pandemic. “Ever since the COVID-19 crisis, people are re-evaluating what is important in this world,” says Proctor. “Kindness and inclusion are becoming more and more important.”
Proctor is right, and there’s proof in the positive response to Goldstein’s viral Gucci campaign. “Can this be our new normal?” Amber Shirley wrote in a comment, to which another user, Nikki McBride, responded, “I couldn’t agree more.” Media outlets ranging from Vanity Fair and Glamour to the BBC and The Today Show praised the campaign for its inclusivity. “I uploaded an Instagram post about Ellie and it’s gone absolutely viral,” says Johnson. “There have been no negative comments.”
Of course, one campaign isn’t going to change the world. Proctor and Johnson know that. “We go through phases,” Johnson says of getting excited about the future and being frustrated with the present. “The important thing, though, is to continue moving in the right direction.” And while 850,000 people liking an Instagram post might not be the end of discrimination against people with disabilities entirely, it’s made one hell of a difference for the movement that Zebedee Management is at the helm of — not to mention what it’s done for Goldstein and those like her who, for far too long, have gone without seeing their own reflections in the media. “I see myself on YouTube, in the papers and magazines, and in the news now,” Goldstein says about her experience post-Gucci. “It changed my life.”
Voices of Disability is edited by Kelly Dawson, a disability advocate who was born with cerebral palsy. She has spoken about her disability on the popular podcast Call Your Girlfriend, and written on the subject for Vox, AFAR, Gay Mag, and more. Find her work at kellymdawson.com.
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