Story by Madison Lawson
Photos by Tony Huynh
Story originally appeared in Teen Vogue
I remember playing dress-up as a little girl and the feeling I would get as I watched my young self transform into Britney Spears. It’s wild to think how much a feather boa from the dollar store could make a girl feel like a true pop star and how the right pair of shoes or a next-level coat can turn a typical Monday morning into a game of dress-up. It’s a feeling that has never gone away for me, even though it’s gotten significantly more challenging as I’ve gotten older.
I have two forms of muscular dystrophy (MD) that have been slowly robbing me of the muscles throughout my body. Muscular Dystrophy is a disease that causes the muscles to weaken over time, and for me is taking away my ability to breathe independently. I have been in a wheelchair since I was 9 years old. My body has changed with my withering muscles, giving me a curved spine and tilted hips from muscles that are too weak to support my frame. I am also very small compared to other people my age, about the size of an average third grader. So when you’re 21 and still have to shop in the kids’ section to find things that fit, it can sometimes be tricky to feel like an adult.
When I was younger, I knew fashion was going to be a big part of my life because when people knew me as the girl with really good style rather than the girl in the wheelchair, I felt seen, not just looked at. It is exhausting being endlessly questioned about “what is wrong with me” and being awkwardly apologized to for something that hasn’t ruined my life the way people assume it has. It’s nice to be noticed for outfits I put together — something I did rather than a circumstance I didn’t choose and can’t change. I actively post my outfits and eclectic makeup looks on my Instagram page @wheelchairbarbie, which was a title I was given when someone told me I looked like a Barbie in my wheelchair while I was shopping.
My frame has in no way lessened my love for fashion. In fact, it’s actually strengthened my relationship with clothing because finding pieces that fit me perfectly is such a difficult task. Most clothing is made for people who stand, and for people who sit all day — like I do — things get awkward. High-waisted pants bunch in the front, and short dresses are a wardrobe malfunction waiting to happen. Somewhere along the way, people like me were taken out of the equation of clothing design.
That is until recently, when clothing lines like Tommy Hilfiger’s adaptive collection began to incorporate innovative modifications to make getting dressed an easy task for people of all abilities. Modifications include double-placket pants designed specifically for seated wear, magnetic closures for people who have a difficult time buttoning, adjustable hems, easy-open necklines, expanded back openings, hems that open, and one-handed zippers that make it easier for people who have disabilities to wear something that truly fits their unique individual shapes.
Innovative designs like these and the advertisements that accompany them add an entire group of people into an equation that for years have been ignored. Squeezing bodies into molds that don’t fit can make it easy to feel like an “other” that isn’t important to the fashion industry. Traditional, ableist clothing can remind you that your body is fallible and flawed every time you get dressed. It’s like that game you play with shapes as a kid, fitting blocks into the proper holes only to find that none of the blocks fit where they’re supposed to go. We need representation that doesn’t ostracize us.