I grew up in Los Angeles. As the city is famous for welcoming idealists from other hometowns, this fact can surprise those who came from elsewhere. I never put this place on a sundrenched pedestal, or viewed it as a one-note Hollywood stereotype. My siblings and I were raised in a suburban house in a close community of largely 9-to-5 routines. 

But the serendipity of growing up in this city, where my parents needed to drive my siblings and I around, insulated me from truly acknowledging the limitations of my body throughout my childhood. I was born with mild cerebral palsy, a physical disability that affects my legs. My knees point inward as I walk, and my joints are often stiff, making for limbs that radiate pain if I move too much or too little. 

I had a few surgeries as a kid, but considered them as either easy material for “What I Did During My Summer Vacation” essays or as an excuse to get really good at Mario Kart 64 (my siblings would dispute this). I went to school with the same understanding children until college, so the outlier bully was silenced by teachers or shunned by peers. My dad brought my backpack into school every day, friends cleared paths in the halls, and missing gym class felt like an honor. I knew I was different, but it didn’t always feel acute. I got lucky. 

So when I signed up to study abroad in Prague during my senior year of college (yet another advantage), I still lacked a clear frame of reference for how physical the world could be. My university was mostly contained to a city block. I was rarely, if ever, alone. And I remember exactly when I realized that I had stepped far outside my well-tended security bubble. 

It was after dusk on a fall night in Prague, and I agreed to meet a friend in Wenceslas Square by myself. I stumbled on cobblestones, got lost in the subway, and then emerged from its tunnel on to the base of rain-slicked stairs. Strangers walked around me as I slowly climbed the steps, possibly sensing that I was tired. And when I looked at my right hand upon reaching the top, it was bright pink and stained black with grime. 

Before I left for the semester, my mom had given me a small bottle of hand sanitizer to use, “just in case.” I had packed it alongside the rest of my toiletries without much thought. 

I was stubborn (we both knew that), and this quality also benefited me as a child. When doctors said I likely wouldn’t walk, I proved them wrong — apparently seeing my little brother do it before me was taken as a challenge. I moved until the braces on my legs cut into my shins and calves, pushing myself to exhaustion. Over the years, I shed a walker for crutches and then a cane. I didn’t want to go to college with any aids, and I made it clear to my mom and to doctors that I wouldn’t use them even if they were helpful. As with most teenagers, I didn’t want to be singled out for my difference.

My mom probably knew that this security bubble was bound to burst at some point during my time in Prague, but didn’t know how or when. She likely also didn’t know that a measly bottle of hand sanitizer would help with this shift. I found the bottle, and placed it in my purse. One has been there ever since. 

The sense I rely on most is touch. I grip handrails and metal bars. I hold on to moving escalators and push elevator buttons. I glide my fingers along walls and push off from the sides of cars. In rare cases, I clutch tree branches stretched over curbs. When a loved one or a kind stranger isn’t beside me to intertwine my arm in theirs, touch is how I get around.

My few months in Prague was an awakening to this habit, a realization that the world is casually dirty to those with disabilities. I had the same human need to be among others. But if I wanted to be a part of society, if I dared to be out alone among non-disabled people who didn’t have to constantly watch their step or mind their balance, I needed to bring hand sanitizer. 

My favorite is the “French Lavender” scent from Bath and Body Works. (I know, Bath and Body Works.) After years of buying whatever was available at the nearest drugstore, I discovered this mall staple’s version a couple of years ago. It doesn’t have a harsh chemical smell, so it relaxes me when I accidentally touch something gross. A bottle fits into any bag, and can last me about three months. Better yet, one costs just $1.75 without tax.

Historically, people with disabilities were not expected to be a part of the public. Infrastructures were built for the non-disabled, where legs could easily bend and straighten over curbs and stairs to underscore normative agility. Disabled bodies, on the other hand, were to be gawked at, shut in, institutionalized, or killed (practices that still continue today). 

The Americans With Disabilities Act passed in 1990, and stipulated by law that public life would no longer discriminate against people in this community. Commercial buildings, schools, restaurants, theaters, transportation — the things that give cities energy — would have to be accessible. I also got lucky that the majority of my life has been lived under the ADA. But that’s not to say that a switch was flipped and suddenly all public spaces became accessible. 

In a 2017 report published in the Journal of Disability Policy Studies, researchers Jill Bezyak, Scott Sabella, and Robert Gattis found that significant barriers still exist in America’s public transportation system to hinder people with disabilities from riding. These barriers range from physical limitations to inaudible stop announcements to blasé operators. Forty-six percent of the 4,161 survey respondents said that public transportation in their area was inadequate, either because it didn’t get them to their destination at all or nearly on time. So, for the 61 million Americans who have a disability — or one in four people — existing in public life can be a challenge. Perhaps carrying hand sanitizer can be thought of as a small act of defiance. 

I now know what it’s like to have a disability when I’m out in the world in a way that I wasn’t totally aware of as a child. Usually, when you give any curious kid an honest answer, they move on. Adults tend to be different. They lock their gaze on my legs for a second longer than they should, and avert their eyes with a quick and deliberate dart. I think they see an example of a body’s fragility in mine, uncomfortable proof that life is random. There’s pity and there’s fear in those stares, and I see them almost daily. 

After Prague, I decided that I wanted to do all I could to call my own shots. I would do my best to ignore the stares, whether I saw them in movie theaters, or stores, or restaurants. I would travel throughout the country and the world, moving through streets and public transportation filled with various hurdles. (I’m talking especially to you, New York City.)

Yes, to do this means keeping track of how much I walk, constantly monitoring how my muscles feel, weighing what makes for the “easiest” route, and falling on occasion. But so be it. I have hand sanitizer in my bag, so I can be on my way. This, I learned, is what comes with giving myself permission. I can’t see the beauty of the world without also seeing the dirt under its nails. 

In these past few years, I’ve wondered: What’s the best way to define a public space? This seems to be a question with an easy answer. It’s a place for everyone, of course. It’s long stretches of sidewalk, it’s rolling lawns of an open park. It’s streets and reliable transportation filled with people. It’s where strangers show the pace of life on full display. 

But what is “public” when so much of this setting is built exclusively for the non-disabled? There are innumerable cracked sidewalks and steep or non-existent curbs. Stairs are everywhere; little and big, wide and short. Cars whip around and zoom by and impatiently honk, and road signs are frequently difficult to decipher. American public transportation with present or working escalators and elevators is spotty, at best. And even if the stations themselves are accessible, sometimes the routes to them are not. On top of all of this, there are still the ever-changing details of a city street: the rushing crowds, the construction zones, the weather. 

Sometimes I feel lucky that I’m mostly able to be out on my own — there’s a sense of accomplishment in navigating an unforgiving obstacle course. But luck should have nothing to do with how cities are built. Public spaces are not made to accommodate disability, and so the energy that this community can contribute is often lost. That exclusion is personal. At least with hand sanitizer, I’ve figured out a way to fight my way in.

Kelly Dawson is a writer and editor based in Los Angeles. 

When stylist Stephanie Thomas meets someone who tells her they didn’t realize people with disabilities have different clothing needs, she asks them a simple question: “What do you do when you stand up?”

The answer: “You adjust your clothing somehow,” Thomas explains. “You pull your pants up; you adjust your skirt. Clothing is designed for standing, so adjustments need to be made for those who can’t stand as much or at all.”

This conversation is familiar to me, as is a lot of what Thomas has to say. She’s a congenital amputee who was born missing digits on her right hand and feet, and I was born with cerebral palsy. Our disabilities are different, but we grew up with a shared stubbornness to make trends work for us, even if that meant stumbling or feeling pain. For instance, we both wore open-toed shoes for the fashion, but also to prove a point. “Someone said I couldn’t,” Thomas says, and that only made her want to more. “I always do what people say I can’t do.”

As an adult, Thomas still has that stubborn quality. But now she’s using that drive to advocate for herself and others.

It may not seem like it at first, but clothing is a disability issue. A shirt may be too hard to put on or take off, pants may have buttons or seams that cause sores over time, and fabrics may exacerbate sensitivities. And if it so happens that a skirt doesn’t have these obstacles, then there’s still a very real chance it has yet another problem: It’s downright ugly. That’s why Thomas launched the Disability Fashion Styling System, which aims to teach clients how to shop for clothes that are “accessible, smart, and fashionable.”

Largely through consultations booked through her website Cur8able, Thomas has developed a case-by-case client list that includes everyday shoppers, celebrities, and brands. So far, she’s worked with names like Macy’s and Beautycon Media, and she’s also on the advisory council of Zappos Adaptive.

But Thomas’s mission isn’t just about finding the right clothes for people with disabilities. She’s working toward a future where the fashion industry is pushed to finally address these customers by providing a wider range of adaptable lines. She also envisions a time when the able-bodied public understands this topic better.

I talked with Thomas about our similar experiences and how she hopes that her work prompts necessary change.

Kelly Dawson

When did you become interested in fashion, and when did you notice that it has its limits?

Stephanie Thomas

Fashion has always been a form of expression for me. But fast-forward to college, when I wanted to participate in the Miss America pageant system. I was living in Kentucky, and they take pageants very seriously in Kentucky. At the time, my coach asked me, “Why do you never button that sleeve?” That’s when I noticed that I never did that, and it was because I didn’t have a right thumb. Her husband was a wheelchair user, so she said, “Have you ever thought about clothing for people with disabilities?” That wasn’t a thing for me in 1992. I had never even thought about it.

Kelly Dawson

So once your coach asked that question, was that a lightbulb moment?

Stephanie Thomas

No, not at all. Pre-Google, I started reading boxes and boxes of research from medical journals, psychology journals, and sociology journals. I read about clothing for people with disabilities, especially veterans, as well as how people with disabilities were viewed in a public space — how it was a form of dehumanization. As I continued to research, I started to notice the gaps.

Kelly Dawson

What other ways did you notice how your disability influenced what you could and couldn’t wear?

Stephanie Thomas

For me, shoes play a huge part in fashion, but I couldn’t wear open-toed shoes — not just for the aesthetic, but for the support. I wore sandals with socks too, and that sort of thing.

Kelly Dawson

I always had an issue with shoes too. Growing up, I would rather have them fall off my feet than miss out.

Stephanie Thomas

Absolutely.

Kelly Dawson

How does the Disability Fashion Styling System fill those gaps?

Stephanie Thomas

I founded the Disability Fashion Styling System in 2004, after 11 years of research. Between 1992 and 2003, I would talk to anyone who would listen to me about the need for clothing for people with disabilities. I called designers for a year and heard nothing, even though I knew there was a need. I didn’t have a plan, and I would say this was a hobby that turned into a business — but it took years, even after 2004. My goal wasn’t to start a business; it was to solve a problem.

I had gotten into this habit of asking myself while shopping, “Is it medically safe? Is it easy for me to put on and take off?” As I started working with clients with disabilities later on, I tried to articulate that with them. I came up with three points: accessible, smart, and fashionable. Accessible represents clothes that are easy to put on and take off. Smart represents clothing that doesn’t cause harm. For instance, clothing with rivets or thick seams when you’re a wheelchair user can cause sores. Fashionable represents whether it works with your lifestyle, your body type, and your mood.

Kelly Dawson

Since there are so many different disabilities that fall on the spectrum, how are you sure that those three principles — accessible, smart, and fashionable — can answer to everyone?

Stephanie Thomas

Because I’ve been using it since 2004. I’ve been working with people with different disabilities, and as we shop, I teach them to know their measurements and their wants so that they can self-advocate. This styling system is so general that it’s easy to remember.

Kelly Dawson

Can you provide examples for what they need?

Stephanie Thomas

Well, there are a lot of examples, so I’ll just provide a few. For people with dexterity challenges, you need to make sure that the closures are easy to get into or that they have options without closures. Or if someone has problems lifting their arms above their head, you need to create options with dolman sleeves or drop sleeves. If someone has a seated body type, you need to make sure that the pants are designed for sitting — that it’s made from a natural fabric, has a high back, has repositioned pockets and crotch area, and longer legs.

This process seems so simple but can be so powerful, because the shopping experience can be overwhelming.

Kelly Dawson

It’s so true. I definitely find myself looking at clothes thinking, “How can I make this work for me?” instead of, “How is this piece of clothing good for me?” The styling system definitely makes it easier to keep safety and well-being at the forefront.  

Stephanie Thomas

All I can tell you is that this works — as long as you check all three boxes. I don’t know about you, but when I’m shopping for shoes, I’ll think, “Okay, it’s easy to take on and off, and I love it!” But then I’ll leave out the part that makes it smart. I’ll take it home and it sits in my closet.

Kelly Dawson

Oh, that happens to me all the time. I have shoes that I could walk in while in the store, but then after I get them altered to fit my needs, I’m not able to wear them down the street. But I also tried on shoes that were easy to take on and off, and were smart, but were also hideous.

Stephanie Thomas

Yes, yes! It’s hard, I know.

Kelly Dawson

So walk me through how you get the word out. Do you go to any manufacturers?

Stephanie Thomas

No. I stopped going to them in 2004, when this all started. If you have to convince people to work with you, they’re not going to get the message. If people come to you, they’re ready for the message.

I’m a business, and I book other businesses through my site Cur8able. Through those bookings, I speak, I style, and I consult — such as on an advisory board, and especially with brands. I also create content on that site, and I’m working on a textbook called Fitting In: The Social Implications of Dressing With Disabilities. It’s not intended to be exhaustive, but it’s intended to introduce people across disciplines to what it’s like to think about disabilities. Have you ever considered that people without disabilities are always asked to have this understanding about disabilities but they’ve never been taught? We live in a world where people are told from an early age not to stare, or not to look at us. And when you look away, we don’t exist.

Kelly Dawson

I think about this whenever I meet someone new, actually. I have a friend who once said, “I didn’t realize how many obstacles there are in the world until I started walking around with you.”

Stephanie Thomas

Our world can be very different. When someone enters into my life, I still worry about being a burden, or that I should apologize for my disability. Even if I don’t see myself as a victim.  

Kelly Dawson

Well, the fact that I can very much relate to that feeling, too, makes me think that there are some bigger issues at play here — about how disabled people are taught to see themselves as less than, and how the larger society isn’t taught to see us as equal. Which is why your work is so important, because it makes it easier for disabled people to be comfortable in public and disrupt that balance.

Stephanie Thomas

I style to power and to educate. Styling lets you see the person before you see the disability.

Kelly Dawson

What are some misconceptions around clothing that perpetuate stigmas?

Stephanie Thomas

I start with disability: what it is and what it isn’t. Who we are, and who we’re not. One in five people in the world have a disability or know someone with a disability. We’re one of the largest minority groups in the United States alone, and the last reported numbers of people with disabilities were over 57 million people. And the World Health Organization said that people with disabilities, their families, and their friends have upwards of $1 trillion in disposable income. The perception of a fashion customer with a disability as being in a niche market is wrong. We’re not a monolith, and this is not a niche market.

Kelly Dawson

The one-in-five statistic always stands out to me, too. But the disposable income should mean something, aside from everything else.

Stephanie Thomas

This is about attitudes, about who is valued. This is about the industry deciding who the fashion customer is. You can’t design for someone you don’t value.

People give more value to intricate designs for dog clothing than adaptive designs for people with disabilities.

Kelly Dawson

How can someone who doesn’t know much about disability begin to educate themselves?

Stephanie Thomas

There are a lot of people within the industry who need to do their market research. Designers should ask themselves, “Who do I want to design for?” You can’t dress or even appeal to someone you don’t value — as a human being, and as a customer. For others, if you do a Google search of “disability and fashion,” you’re going to get some traction now, whereas even three years ago you may not have. Listen to and read about the disabled community, watch TED talks about disability, and ask questions.

Look at your own biases, too. What attributes are you assigning to people with disabilities? You need to be honest about your biases so that you can learn what you don’t know. Feel that vulnerability, and get over it. This is not about you.

Kelly Dawson

That’s great advice.

Stephanie Thomas

Last thing — I applaud brands who are bringing people with disabilities into their photo shoots, but I need to say this: We are not props. Stop putting people with disabilities in clothing that doesn’t honor their bodies. Because if you have an ad of a wheelchair user in your clothes, but you don’t sell clothes for wheelchair users, then you are potentially hurting that person. Sure, it’s diverse. But get it right so that you can have that customer. Take the time to do it right.

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