Image courtesy Stephanie Thomas
I typically dread phone calls (hello Social Anxiety Disorder). But in the two weeks leading up to my scheduled Skype interview with Stephanie Thomas, I was oddly excited. To me, she’s a true innovator, and being the innovation junkie that I am, I spent two weeks inside my head trying to whittle down the thousands of things I wanted to talk to her about. Stephanie is a Disability Fashion Styling expert, thought leader, and tastemaker. She invented what’s known as the Disability Fashion Styling System© (DFSS) in 2004. It’s an inclusive and empowering styling guide for Disabled people and their dressers that helps them dress with confidence, dignity, and self-reliance.
Stephanie is also an entrepreneur. She is the CEO and Founder of Cur8able – a social enterprise specializing in dressing with disabilities. Back in 2010 there was no place online about dressing with disabilities, so she started Luv What U Wear – your go-to place online for dressing with disabilities, which was relaunched as Cur8able in 2015. She’s spent over 2 decades researching clothing and retail trends exclusively for Disabled people. Today, she’s known as the go-to stylist in Hollywood for Disabled actors and influencers. She’s also authored/edited an anthology, Fitting In: The Social Implications of Fashion and Dressing with Disabilities.
Something not so secret about me? I tend to fan-girl over wildly accomplished women who do good in the world. So, by interview time, I have the kind of excited nervousness you feel just before you meet your favorite movie star. But, from the moment her webcam comes on, I already feel like I’m having a Skype call with a girlfriend. We talked about hair and head scarfs in the first couple minutes, like two homegirls would. What struck me most about Stephanie is she is incredibly real and authentic; she has no airs about her. Odd for the over-achiever that she is. She runs a company; she’s written a book; she teaches a college class; and she’s managing a slew of partnerships with the likes of Zappos and AirBnB. She was also on her way to the NAACP Image Awards that night.
She’s also incredibly comfortable in her own skin. She has the kind of confidence that comes from a place of complete self-love. “We have to start defining ourselves and self-identifying in a way that empowers us,” she reminds me. “Not in a way that implicitly forces us to see ourselves through someone else’s perspective.”
That’s why she really hates the narrative of Disabled people “overcoming challenges”. That narrative is often captured in insensitive things that the abled say, like “People in wheelchairs have to go through so much. How do they do it?” Or, for Stephanie, when people notice she doesn’t have a thumb, “Oh, it’s no big deal. I didn’t even notice.” She muses, “Why? You don’t need to apologize for my thumb. This is the way I was born.”
And that’s really the issue at hand isn’t it. That we view the world from singular perspectives. That there is an abled lens of the world and the features of our built environment. The abled accept certain things as fact: humans are bipeds, humans have two arms, humans have 10 digits, humans can see, hear, etc. And we design products and experiences for that singular prototype in our minds. So, for someone limited by the built world around them, for someone whose features don’t match the prototype that a product or experience was designed for, just existing becomes an act of achievement in the eyes of the abled. For Stephanie, this rings especially true. It took her a while to shred the “overcoming challenges” super-woman trope. As a child, dance teachers would comment on how well she danced, with the obvious parenthesis being, for someone born without toes. “Like, ballet teachers wouldn’t take me on seriously,” she remembers. “I’m unskilled in the professional’s eye, but whenever I meet a professional they are like, ‘How are you able to emulate so well?’”
But now, she rejects the idea that her worth is measured by how well she navigates the abled world. “The persona of overcoming challenges actually feeds the idea that I’m different. When in reality, I’m not different, I’m Stephanie.” There’s no need to compare, she argues with a passion that’s tangible – even through a Skype call 10,000 thousand miles away. “Well, hell, if I look at it from your perspective you don’t walk like I do so you’re like mind blown because you don’t do it like I do. Well, I was never created to do it like you do. I was created and this is my normal. I have one thumb on my left hand, so I snap like this. That’s normal for this hand. I have no thumb on this hand, so I snap like this. This is my normal. It’s like being a black woman. This is my hair. This is not ‘I’m overcoming.’”
If there’s anything Stephanie has to overcome, it’s her own fierceness. Whoo, child. *snaps*
Snapshot from Stephanie's TEDx Talk
Because her disability is not immediately visible, she describes herself as living in both the Disabled and non-disabled worlds…almost like a shape-shifting anthropologist. Having that experience, I wanted to know what she sees at the core of these seemingly lost-in-translation moments between Disabled and non-disabled people. Why do the abled still get it so wrong? Why do they say offensive things to and about Disabled people? She references her Woodbury College students’ response to assigned reading on disability etiquette. “My students were like, ‘Why didn’t I know this? I’ve never heard this,’ They’ve never been taught. No one knows because no one teaches it, and I am a firm believer in something that I espouse called education through interaction.”
Stephanie explains that, in the U.S., the lack of interaction between Disabled and non-disabled people can be traced back to ‘ugly laws’ that deemed it illegal for any person, who is “diseased, maimed, mutilated or deformed in any way, so as to be an unsightly or disgusting object, to expose himself to public view.” While these started as beggar ordinances, these laws not only essentially criminalized disability, but created a culture of isolation. “I think that’s why people with disabilities and people without disabilities actually don’t often know how to react because the etiquette is not taught. We’re taught, ‘Hey, don’t stare. Don’t look at them,’” she reasons, “People with disabilities are erased.”
And erased they are: from movies, from advertisements, from our entire collective visual consciousness. But, we’ve come a long way, she reminds me. I was ranting to her about how awful the current offering of disability stock photos can be (more on that later). Stephanie’s still optimistic, though. “There wasn’t a prosthetic category before [when searching for stock photos]. We’re on the trajectory to get there but we’re not there. The fact that we’re here and Getty Images is starting to acknowledge it, I think is pretty powerful.”
I don’t know if I feel as optimistic. There are an estimated one billion Disabled people on the planet. And economic estimates say they – along with their immediate communities – represent about $8 trillion in spending power. Yet I see campaigns on Twitter advocating for Changing Places Toilets that are fully accessible. Like, in 2019, it’s still not a thing that every public toilet is fully accessible. I find these kinds of juxtapositions really confusing.
“It’s really not complicated,” Stephanie says casually, in a way that lets you know you’re about to be schooled. “You can’t market to or design for someone you don’t value, and you can’t value someone you don’t see as a fashion customer.” She goes on to point out that the market for pet products is valued at $16 billion. Yet, even though Disabled people and their communities represent $8 trillion of spending power, Stephanie compares, “you have more clothing for pets than you do for Disabled people in stores. It’s not market representation in the numbers, it’s the value. We see more value in a poodle, in a labrador, in whatever…than we do in a fashion customer with a disability.”
So, this is less about actual dollars than it is about what we value. Or, as Stephanie explains it, “it’s just attitudinal. It’s not a magic pill. It’s just attitudinal.” It’s no different, she says, to women of color having a hard time finding hair care or the right shade of foundation. “The bottom line is value, attitudinal changes, seeing people as a viable customer. When people are doing the marketing and the branding and they’re sitting in there looking at demographics; when they’re putting together the whole brand DNA, they are not including certain people and that’s just a reality.”
In her decades-long work as an “accidental” disability fashion stylist (Stephanie uses the word “accidental” because she didn’t even realise she was styling), these attitudes are all too real. She styles Disabled actors and influencers, helping them to find the right looks for red carpet events. But, she says, “some people don’t want their clothing on certain people. I’ve literally had people tell me behind closed doors, ‘We don’t want our products associated with them.’”
I’m shocked to hear that, but then again, not really. The battle for more diversity in the fashion and media industries is not a new one. We’ve been collectively finger-wagging, shading, and shaming mainstream media for its lack of diverse representation for some time now. Ironically though, many of those conversations have excluded disability representation altogether. Stephanie agrees. “When it comes to diversity, the D in diversity – the disability in diversity – is always left out,” she says. “When it comes to body positivity, it’s always left out.”
It’s almost like equal media representation is one big pie, and each under-represented group is fighting individually for its own piece. Still though, as siloed as the battle to be seen has been, we cannot deny the progress made over recent decades. Our visual, cultural landscape has expanded over time to include more representation for women, people of color and for the LGBTQ+ community. I ask Stephanie if she thinks the Disabled community is facing a similar fight.
She definitely agrees, but she points out that, unlike the African American or LGBTQ+ communities, Disabled people have “no political move[ment] behind them.” And without that backing, she argues, we’ll continue to see dick-ish moves like withdrawing funding for Disability programs (side eye at Betsy Devos) “because there’s no machine behind Disability to say, ‘I’m going to need you to not do that’.”
For Stephanie, this lack of a strong political machine behind Disability comes down to the fact that ‘Disability’ in itself is an umbrella term, and that activism and affinities typically happen at a more disability-specific level. In other words, there are stronger movements behind Autistic people, or people with Cerebral Palsy, or people with spinal cord injuries, for example, than there are for the broader Disability community. And that makes sense. While many may self-identify as Disabled, the needs being advocated for are varied. She points out that this is mirrored at the funding level too. You’re more likely to see a fundraiser for Blindness than for Disability in general. “It’s so segregated. People don’t come together because they’re all vying for the same money.”
“We see more value in a poodle than we do in a fashion customer with a disability.”
But, that’s just one part of the answer to the question what’s it going to take to get better representation for Disabled people in media or fashion?, according to Stephanie. The rest of it comes down to culture. What really needs to happen is for people to see Disability as a culture, she tells me with deep conviction. “That ability to see Disability as culture would change everything,” she continues, “which is why I don’t use whack terms – and you can quote that – whack terms like ‘differently-abled’ or ‘all abilities’.”
Yes, she said “whack” and I loved her from that moment. Like, I-want-to-tattoo-her-name-on-my-arm kind of love.
Those terms, she tells me, have “nothing to do with culture and how we exist in the world.” But once again, her optimism shines through. “I think we’re on a trajectory and I know you hear my passion and my angst. I’m really optimistic though, because I know that this is not a race. It’s a marathon. It is not a 100-yard, it’s not a sprint. It’s going to take time.”
Which is why Stephanie’s work is so important. From teaching, to developing an anthology, to her work through Cur8able, she is using fashion as a way to create that culture. She’s making it clear that Disabled people are not simply viable as fashion consumers, but desirable.
A visit to Cur8able.com is a window into the world Stephanie was born to create. Bright, glamorous shots of Cur8tors fill the site. Cur8tors are style influencers invited by Stephanie to share fashion and beauty shots on Cur8able’s social media feeds. The team includes an international fashion industry branding consultant, a disability thought leader, a disability advocate, several actors, a You Tube content creator, nail tech/wheelchair basketball player, body-positive advocate, and an award-winning TV producer/model. Scrolling through Cur8able’s Instagram feed does not disappoint. The photos, the outfits, the magnetic poses with “I’m-the-shit” attitudes all scream DISABLED IS DESIRABLE!
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“Before it’s all over.. We are the glue that holds this world together. Women wear your crowns unapologetically. 👑 Why be inspirational when I’d rather be influential. @cur8able Tee by @disabilityfashionstylist • • • #internationalwomensday #womenempowerment #influencer #tapforcredits #livelifetothefullest #campaign #flawless #standforsomething #holdingspace #advocate #disabilityadvocate #model” #ipreview via @preview.app
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That’s our girl! Shout out to @drupresta Read her big news below!! Congrats Dru!!!💕 HERE ITS IS ❣️ FINALLY!!!!!!!!! I can announce that being part of @littlewomenofla for the second time has been the best yet!!! THIS SEASON; So many adventures and memories that I can’t wait to show you!! LOOK OUT FOR THIS SEASON APRIL 4th ON @lifetimetv 🥰 I WILL BE GOING LIVE FOR THE EPISODES SO MAKE SURE YOU GUYS TUNE IN 🙏🏽😌🗣🔝♥️ #littlewomenofla #sexyatanysize #tvshow #littlewomenla #bodypositive #watchwhathappens #changingperceptions #getready #biggerthanever
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Congrats to @itslololove her first film project as an actor “Give Me Liberty”, is premiering at @sundance film festival in the Next Category! 📸 @lorenejanae Styling @disabilityfashionstylist Of @cur8able #sundance2019 #sundance #actorslife #representationmatters #wheelchair #wheelchairlife #equity #models #influencer #stylist #stylingexpert #disabilityawareness #disabledandcute
What does it take to be a fashion stylist for Disabled people?
It’s also clear that Stephanie knows what she’s doing as a stylist. I wanted to know more about her Disability Fashion Styling System©.
“In short, it’s Accessible, Smart, Fashionable,” she explains. These are the three guiding principles behind her styling system that govern the choices she makes when picking outfits for clients. First, she considers how easy it is to get in and out of the item. “Is this easy for you to put on and take off? That’s Accessible,” she says. Then there’s Smart. As Stephanie describes it, “I want some clothing that’s not stupid…something that’s medically safe. To me, clothing that makes you sick or nauseous, or that disrupts or causes body sores is not smart. Medically safe is smart. And then, fashionable is something that is going to work with your lifestyle. It’s something that works with your body type, that is beautiful, and you love it.”
Stephanie styles one of her clients, YouTuber @itslololove
©Brad Swonetz for Zappos Adaptive / Cur8able.com
The Styling System is part of her broader Stephanie Thomas Styling Method that forms the basis of her work as a fashion stylist for Disabled people. The Styling System is a tool that everyone can use, however, whether you’re shopping for yourself or a loved one. It’s also something designers can use to assess the accessibility of their own collection. That if they’re standing in front of it, Stephanie says, “They can say, ‘Okay, now, for someone that is seated [in a wheelchair], is this accessible, smart, and fashionable? For a little woman, would this be accessible, smart, fashionable?’”
When it comes to working directly with her clients though, it’s not always so clear-cut. Stephanie describes shopping with her clients as an emotional process. Often because they may fall in love with an outfit that doesn’t meet the Accessible or Smart criteria.
Once a client makes a booking with Stephanie, she starts off with a phone call. “I just ask them what it’s like dressing, or what are their challenges dressing. That’s always a loaded question because most people don’t think they have challenges,” she explains. She tells me about a client who said he had no challenges dressing, even though it takes him three hours each time.
After discussing the functional or practical matters of dressing, Stephanie tries to get a sense for her clients’ preferences. “The next thing we talk about is what they like. What’s your aesthetic? How do you see yourself in your mind? What’s your image of who you are and how you dress?”
Next, they go shopping together. This is when the real work begins. Stephanie’s job is to find an outfit that’s true to her clients’ aesthetic, but still meets the criteria of her styling method. As she goes about describing this shopping trip, I imagine it’s like one of those wardrobe makeover reality shows, like TLC’s What Not to Wear, where there’s always a heated battled between the style expert and the lowly fashion victim doing everything they can to hold on to that one flannel shirt.
So, I ask her if there are any tense moments when shopping with clients. She says there’s definitely push back. “I get push back from my clients because they say, ‘I just like it. I just want to wear it.’ I say, ‘I get it, but I’m not going to change my policy for you. Because if I change my policy for you – if it’s not accessible, smart, fashionable – and then, I…or someone else is not there to help you dress, and you’re struggling to get in it, then, we’ve just wasted our time and money. You should be able to have something that works for your body type’.”
For Stephanie, this isn’t just business. There’s a proven method and a mission behind her work. She wants Disabled people to dress fashionably for their body type and love what they wear, but not at the expense of their health, dignity, or independence. And so she will never let a client pick an outfit just to please them or get the job done. If a client insists on getting something that doesn’t meet the criteria, she tells them to either buy it another time, or buy it right then but without her consent. “I have to be honest about that because [what] if they say ‘styled by Stephanie’ and it looks all whack?” Yes, she then said whack again.
Although she’s tough about sticking to the functional criteria, she definitely lets her clients have the final say when it comes to aesthetic choices like color. “Styling is always co-creating and that’s not a Stephanie Thomas Styling Method thing, that’s [what] any good stylist [would do]. You’re going to always co-create, you don’t bully people into telling them their own style aesthetic.”
While Stephanie may not dictate her clients’ style choices, she’s certainly dictating to the fashion industry that its future is inclusive. She refers to her styling system as “the bridge between where the fashion industry is and where it’s going.” Her consulting extends to the business world, where she’s hired by brands to help them meet the fashion needs of Disabled people in a variety of ways. The fact that some brands are concerned about this gives me some of that optimism that Stephanie has.
So, where is the fashion industry going? We know that fashion labels like Tommy Hilfiger, Izzy Camilleri, and Zappos have launched adaptive clothing lines. Can we expect to see more major brands introduce inclusive collections? And, what will it take to get there? Stephanie encourages clothing designers to start small. “Start with looking at what you have, put your toe in the water, get in a community, get the feedback, and then, go from there,” she advises. She’s pretty adamant that making more inclusive fashion isn’t a major design challenge. “Get over the idea it’s a design issue,” she says, “Once you discover where pockets need to be for sitting; once you discover how to make sure that someone can get in a pair of pants with braces or a leg cast, that’s it. Once you figure out magnetic closures, hook and loop, those are the design issues.” This she refers to as a universal approach to fashion design. And there are already some brands that are creating clothing that is designed more universally. For example, as Stephanie explains, clothing with “…very few fasteners. Or, it’s not complicated to get in and out for certain body types.”
But this all comes down to choice. Or, as Stephanie describes it, attitude. The path to inclusion requires an attitudinal change. It requires a decision to meet the needs of an entire market segment that is typically left out: those who’ve been told their bodies are “too different” to be included. We have to get over the idea that this is difficult, because it’s not. This is a question of will, and the courage to ask, “Who did I leave out?” each time we create something. And, the bravery to ask ourselves why we don’t see value in a Disabled body.
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