I’m a Disabled Woman in My Maximalist Era. Here’s How I Achieve the Look & Lifestyle

Literally speaking, I am not like other girls. I am a statistical anomaly. In the United States, about 3% of babies are born with a disability — and I was one of them. As a result, it affected the way I perceived myself. Growing up, I wholeheartedly believed I was unlovable. As a gen Z-millennial cusp, my tacky Y2K style reflected this self-hatred: I hid behind layers of clothes, like a corny Bobby Jack T-shirt accessorized with a tie, which I paired with a sequin skirt layered over low-rise skinny jeans. Gah! Now in my unapologetic, maximalist era, I could never. But it’s been a journey to get here.

I live with Maffucci syndrome, an extremely rare bone disease with fewer than 200 documented cases in history, and I was trying to disguise everything it came with. I was born with excruciating bone tumors all over my body and vein tumors on my hands and feet. My legs were the most-affected limbs. My right leg was significantly shorter than the left and also zig-zagged. Naturally, I had a limp growing up and had to wear a shoe lift, a custom-made platform that helped compensate for the difference in length, on my right foot. As I grew older, the discrepancy between my legs likewise grew. Eventually, this required numerous surgeries.

At 6 years old, I began the first of 19-and-still-counting invasive surgeries. This left me as a predominantly wheelchair user, homebound, and homeschooled, even more disabled than I previously was. My disability kept me away from the friends I should have made, with whom I could have secretly exchanged doodle-filled notes, showed off my cool new grape-scented pencil from the Scholastic Book Fair, and screamed, “ewwww, cooties!” in unison when a boy sent back a note colored with my name and hearts all around it. It kept me away from the parks where I should have hung from the monkey bars and from the classrooms where I should have sat criss-crossed in a circle and shared what I brought for show-and-tell. Instead at that age, I learned how to swallow pills for the first time, and my pain became more pressing.

“I understood that there was nothing wrong with me, that my physical difference did not define me. The real problem was ableism.”

Amid all of this, my orthopedic doctor instructed my mom to make my wheelchair my primary mode of navigation, but I didn’t care to abide by that rule when I wasn’t in pain. I remember asking Mami to play “Breakaway” by Kelly Clarkson in my living room one evening. I got up from my wheelchair and danced and twirled with a limp, grasping onto the furniture around me for stability as I moved around and sang along to the lyrics with a Dish Network remote control as my microphone: “I’ll spread my wings and I’ll learn how to fly…”

Mami recorded the entire performance for the family group chat so that our relatives in Venezuela could see how I was doing. And since I saw my doctor a few times a week, Mami also showed my performance to the orthopedic doctor later that week. Instead of reprimanding her for letting me get out of my wheelchair to dance, he had it posted to the hospital’s website. In our countless appointments, Mami and I bumped into the parents of disabled children who looked just like me. They would tell us that my video made them cry, filled them with hope, and inspired their own children to follow in my footsteps:

To be disabled, yet free. To be disabled, yet unapologetic.

When I wasn’t in the hospital, the juxtaposition was stark. Because I had such an intricate procedure with open wounds from the external fixator on my leg, I was prone to infections. This put me at risk of having my entire leg amputated, so I couldn’t leave my house too often. On the rare occasions when my father would take me to Publix, I would get horrified glares. Parents would instruct their children to avert their eyes or walk in the other direction as soon as they saw me. Some were bold enough to ask my dad what was “wrong” with me. But even then, still in single digits, I understood that there was nothing wrong with me, that my physical difference did not define me. The real problem was ableism.

But eventually the othering and bullying got to me. I stopped wearing skirts, dresses, and shorts in public. The constant ableism caused me to believe that no one would love me because of my disability or my deep scars. Then, when I was about 12 years old, I had an epiphany: If anyone wants to judge me because of my disability, they don’t actually love me or care about me, and they don’t deserve to be in my life anyway. And that was the revolutionary and pivotal moment that inspired me to be unapologetically disabled.

“I explored my personal style and used it as a vessel for reclaiming autonomy over my body and the symptoms I often cannot control.”

From that day onward, my wardrobe became an extension of the real me. I wore skirts. And dresses. And shorts. Unbeknownst to me, there began my maximalist era. I explored my personal style and used it as a vessel for reclaiming autonomy over my body and the symptoms I often cannot control. As a teenager, I became a fashionista, and people applauded me for being so confident and stylish. In the early 2010s, I wore high-waisted bottoms and cropped tops. I cut my bangs shorter than ever — eventually getting a pixie. I even began wearing short block-heeled sandals before they were trendy.

Now, I get dolled up every single day and put on makeup — regardless of my pain levels. Even if I’m just going to stay in bed all day and I can’t control my symptoms, I can control what I wear. These days, being unapologetically maximalist is a coping mechanism. Here are five ways I achieve this lifestyle and look.

Wear colorful clothing.

Don’t underestimate the mood-elevating power of putting on a colorful outfit and bright lipstick. This phenomenon, known as dopamine dressing, lets you benefit from the mood-boosting effect of wearing colorful clothing. Anecdotally, it is my personal experience that dopamine dressing is a natural medicine to some extent. There’s something incredibly soothing to my pain when I can shower with warm water and then put on a pink-and-yellow outfit with a matching beret and accessories, bright lipstick, and magnetic eyelashes.

“Even if I’m just going to stay in bed all day and I can’t control my symptoms, I can control what I wear. These days, being unapologetically maximalist is a coping mechanism.”

If you’re someone who traditionally strays from colors or is afraid of trying out new color combinations, I highly recommend investing in a color theory book. I personally love Sanzo Wada’s A Dictionary Of Color Combinations. The book provides you with 348 distinct color combinations, which comes in handy when you have no clue what to wear and want to try out new color pairings.

Use novelty accessories, please!

Accessorizing is essential to any outfit, regardless of your style. Funky novelty accessories are extremely underrated in the world of fashion. As a maximalist, they’re vital to my wardrobe. Believe it or not, I have 29 berets (and counting), for every single occasion and color in my wardrobe.

As someone with a polychromatic wardrobe, having a variety of accessories can make the look come together in a thousand different ways; it makes outfit repeating that much rarer. One of my favorite ways to accessorize is with novelty purses, like with a pink dollhouse purse. I also have a variety of vintage-inspired telephone purses. An added benefit is that I can pose with the prop telephone that comes with the purse as if I’m actually on the phone. (If you’re wondering: Yes, it can connect to my iPhone with an aux cord adapter.) If you don’t like kitschy purses, then you can try another accessory, like earrings. Whatever you choose, you will have many options in so many different shapes, designs, and sizes. The possibilities for chic accessorizing are truly endless.

Color coordinate your outfit.

The art of color coordination is another styling superpower many people underutilize. It can totally transform the most bland, mundane outfits into a look straight out of the runway. Let’s say you wear plain jeans and a graphic print T-shirt that has pink accents. If you paired that with white sneakers and a black cross-body satchel, it could be kind of boring.

“If I’m going to get stares for being disabled anyway, I might as well give people something iconic to look at. “

Now, imagine you accessorize with a pink baguette purse, pink block heels or mules, pink flamingo earrings, and a pink beret. Suddenly, you have an outfit that went from blah to chic and put-together, and you’re still wearing basics. This is precisely how color coordination can work for you.

Invest in a pair (or two or three) of block heels.

All my life, I wanted to wear heels to feel like a princess, even if it was just for Halloween or another special occasion. However, given that my doctor instructed me to wear a shoe lift because of my limb length discrepancy, heels would not have worked at the time. Luckily, now that I’m a wheelchair user, I can wear them every single day.

People always assume all heels are inherently uncomfortable to wear. That is simply not true. The type of heel makes a world of difference in comfort and practicality. Unless you have the balance and ankle-strength of a circus performer, I generally advise straying away from stilettos. Personally, before I started losing the ability to walk and began relying on my wheelchair daily, I found that block heels and platforms provided the necessary stability and comfort required for walking. Granted, I was never able to walk for more than 15 minutes, but those 15 minutes needed to be as comfortable as possible as someone with mobility issues.

“Let your imagination run as wild as the audacity of ableists.”

Personally, I have heels in nearly every single color, but that’s just me. Add a pair or two or more to your wardrobe in different colors to give yourself more ways to accentuate your outfit.

Embrace who you are.

This tip goes for everyone, but particularly other disabled icons: Embrace all of who you are. One way I do that is by accessorizing my mobility aids. Typically, mobility aids are not fashionable and connected to negative stereotypes, but when I accessorize my wheelchair with rainbow spoke skins, it’s like I’m saying, “I’m proud of who I am.”

If I’m going to get stares for being disabled anyway, I might as well give people something iconic to look at. I try to find accessories that match my dynamic range in colorful outfits on any given day. You can also use patches for the backrest, floral decorations for the wheels, push rim covers, spikes for the handles, and more. Let your imagination run as wild as the audacity of ableists.