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Finding my personal style with dwarfism meant breaking all of fashion’s rules

I’m a little person who loves clothes, but being an adult woman at the childish height of 4’10” and defining my own personal style unlike that of a 9-year-old is a lot like running a marathon in a pair of Alexander McQueen jellyfish stilettos — impossible and ridiculously painful. The truth is, fashion isn’t a little matter for little people.

As the only person in my family with diastrophic dysplasia, one of the rarest forms of dwarfism, I spent my childhood enduring joint pain, muscle stiffness and undergoing multiple corrective surgeries to fix my bowing bones. Sure, there were times I enjoyed the mall with my friends, but as a teenager I felt banished and bound to stores geared toward tiny tots. I frowned within the Limited Too and other juniors’ departments while my peers enjoyed The Gap, Abercrombie & Fitch and Delia’s (a popular store in the ’90s). Floral baby doll dresses, mixed prints, layered plaids, oversized Keith Haring and graphic tees, angora cropped sweaters with miniskirts and thigh-high stockings (Thank you, Alicia Silverstone) — I envied not so much the styles but the ability others had to choose that style should they want to.

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At 15, I left high school to undergo the bone lengthening surgery. Determined to gain independence, I lengthened my bones an amazing 14 inches — the most anyone with diastrophic dysplasia has ever obtained. It was grueling, and during the process I could wear nothing but men’s XL boxers, fluffy soft socks for my swollen feet and loose tank tops. These items made tasks like using the toilet easier, but they made me feel ugly.

During the hot summer days of my rehabilitation, my best friend Mike drove to my house in his beautiful black truck. He always dressed nicely and was known to create fashion movements of his own. While I healed in my Posturepedic bed, he’d throw mulch chips at my second-floor bedroom window.

“Babes! Open the garage door and let me in!” he’d yell. Embarrassed by my clothes, I refused. One time I even pretended not to be home — a decision I’d later regret. I was dressed nothing like the girls he was accustomed to being around — freshly painted toenails to match their pretty flip flops, denim shorts that hugged the butt and fitted tanks. No. I had to hold up my boxer shorts with safety pins for Christ’s sake. My appearance, I was certain, would mortify him.

More wood chips struck my window. “Fine!” he yelled louder, getting the hint. “Be this way!” Then he drove off. He called that evening and hit me with a barrage of expletives. Even though he was my best friend, there were things he didn’t understand.

Yes, the lengthening procedure gave me a sense of independence. At home, I could see over the kitchen counter, reach my own juice in the fridge and grip and unlatch window locks to let in a warm breeze. Out in town, I could see over the clothing racks, push elevator buttons and scan my card in Square credit kiosks at the cashier, but none of it mattered. I didn’t feel comfortable enough to buy a thing. So, I tried to make what I had work.

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“What are you doing?!” my mom demanded one day when she entered my room and found me using a razor blade to scrape the decal “Cute” off the chest of my shirt. There were daisies and glitter tulips surrounding the letters that had to go, too. Frustrated, in that moment and for the first time, I wondered, “What exactly is my style?” As a woman with dwarfism, were there specific fashion rules I had to adhere to? Even after limb lengthening, could I pull off wearing stripes? Patterns? No patterns? And what about colors like oranges and greens? Or no, because regardless of my surgeries, I’ll remind others of an Oompa Loompa?

I spent so much time flipping through magazines like W, Allure and Glamour that I noticed I gravitated toward these things: edgy accessories that were structured and hardcore like the wires and rods that once strung through my body. I wanted to evoke that androgynous femme fatale rebellious attitude as Marlene Dietrich had done in her day. To me, it embodied all I had endured. At the same time, I wanted to be playful with color and lots and lots of sparkle. Think Katy Perry but without all that candy stuff.

Back in the mall, when it came time to finding these pieces and trying them on, the clothes didn’t fit me as I had envisioned. A reality I was unprepared for. Again, I developed confidence through surgery but lost it through the double doors of Macy’s.

One Thursday night in the summer of 2001, I grew tired of perseverating around the issue. I just wanted to go out to dinner with my mom. We ended up at T.G.I. Friday’s in Marlborough, Massachusetts. I pulled an outfit out of my closet I felt comfortable in — pink denim jeans cut at the bottoms and frayed (with three perfectly cut and frayed holes in the knees to match), Timberland boots and a bold tan-and-white striped short-sleeved top. I let my brown hair fall freely and completed my look with a Swarovski headband. I even plastered on some lip gloss and glitter eyeshadow.

To my horror, just before our appetizer was served, Mike walked in. Of all the restaurants in all of Marlborough, he had to walk into mine. And with him, his entourage of stylish “it” girls. I hid behind my menu as he headed in my direction with his squad. “You look great, babes!” he shouted. I blushed. He continued, “You need to dress this way more often.” I asked, “Why?” His answer sent me figuratively across the room. He replied, “Because it brings out your smile.”

That outfit was the last ensemble I’d see him in alive. Mike committed suicide about a week later.

After a time, I gathered the courage to enter the double doors of Macy’s again. I looked at all mannequins decked out in outfits I adored. Then I finally said it: “F*** it!”

I gathered every item of clothing I loved but was always too insecure to try on — sheer quarter-sleeved tops with sequins sewn in, tank tops to wear underneath and denim shorts. And not just black combat boots but pink ones, blue ones and platform glitter sneakers. Leather jackets and, damn it all, even leopard prints. I experimented with it all. Before I could dress myself in anything, I had to strip down and embrace that which made me unique — big butt, wide hips, even my scars.

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Truth is, there are many challenges women with dwarfism face when it comes to shopping for clothes. There’s not much of a selection. We do have to pay careful attention to the direction we go with our style. We damn near have to become our own seamstress and designer just to look presentable. Even our shoes have to be specially made — Project Runway has nothing on this community.

Here’s another truth: Women of all shapes and sizes face challenges shopping for clothes. Having dwarfism or being handicapped doesn’t make us special in this arena. In 2012, for the release of my memoir, Dwarf: How One Woman Fought for A Body — and a Life She Was Never Supposed to Have, I had the honor of doing a photo shoot for one of the very magazines I used to study — Allure. And I was dressed by one of the most talented teams of stylists in New York City. Together, they mirrored what Mike tried to convince me of — the journey to finding one’s style is about playing with trends and figuring out what makes you feel comfortable.

For me, puffy-poofy or pleated skirts, tunics, boxy tops, oversized layering with matching oversized bags and hats, shirt dresses, Bermuda shorts these are all major fashion no-nos. Then again, if I really love one of those aforementioned items, screw the rules. The color green or orange, loud crystal embellishments and those looks from strangers? Yeah, I’ll take those, too.

Mike’s death proved we all have insecurities — some you see and some you don’t. Fashion is not just about clothes. It’s about showing the world who we are. It reflects how we feel on the inside. I still have that outfit from T.G.I. Friday’s. It reminds me that style cannot be found by sifting through the racks. Rather, style is defined by attitude. And being a fashionable person is always about risks and taking what is, changing it and making it your own.

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