If bras hurt your shoulders and make your pain worse, don’t wear them. If that itchy sweater your grandma gave you aggravates your sensory problems, thank her for it, but don’t wear it. If heels make your feet ache or make your dysautonomia flare, wear flats to parties. You shouldn’t follow any social conventions that make your symptoms worse, let alone ones related to something as insignifcant as the clothing you put on your body.
Spoonie fashion problems. I can’t remember the last time I wore jeans :’)
My style now is hobo meets girly girl. Leggings, aladdin pants, sweaters, cardigans and flowy skirts in all lengths. My haircare routine is washing it once a week and brushing it whenever I do need to leave the house. I can’t bother with make up at all so I don’t own any.
Anyone else who’s style has completely changed since getting sick?
Partnering with an organization called Global Disability Inclusion, FTL Moda casted models such as congenital amputee Rebekah Marine and Madeline Stuart, a teen with Down Syndrome to walk the runway in their NYFW show. The show is easily one of the most uplifting on New York Fashion Week’s busy schedule, for the undeniably positive vibes it sends. One model even got the feature of a lifetime on a Times Square billboard.
I am 26 years old and I have cerebral palsy. I am also a writer, journalist, activist, and I travel around the world speaking about disability and representation. But my humanity can sometimes take a back seat to the eyes of strangers who are often either agitated by my mere presence or feel entitled to answers about my disability as if it is my only trait. I experience this every time I enter public spaces. The eyes on me are unforgiving; some people even going as far as making snide remarks when I pass by. In stores, I sometimes feel like I am at a press conference. People feel they have the right to either assume that I was in some mysterious car accident (I wasn’t) or to walk up to me and ask questions about my body.
No one likes to be judged unfairly. It is dehumanizing and traumatizing. Feeling like people are looking at you or judging you is one of the most fraught experiences when you are a person with a disability. So what do you do when your job is to have people look at you? Chelsea Werner, a gymnast and model with Down syndrome; Jillian Mercado, a model with spastic muscular dystrophy; and Mama Cax, a blogger, model, amputee, and disability advocate, all know this experience firsthand. Modeling is predicated on a traditional sense of ability: Models have bodies that are considered to be aspirational, and they strut down the runway as though they are giving an ode to able-bodied walking. This makes the rise of models with disabilities revolutionary, calling into question an acceptable form of discrimination in the industry. Campaigns such as Aerie’s most recent, featuring disabled models, disrupt existing visions of beauty and make space to both celebrate and market to a wider array of bodies.
For Jillian, Chelsea, and Mama Cax, the more their stars rise, the more they are in front of judgmental eyes as they reach a wider audience and an industry that doesn’t quite know what to do with the disabled celebrity.
While the fashion industry has been reluctant to include a full range of diverse bodies, what any smart business is responsive to is demand. In 2013, when Bethann Hardison, Iman, and Naomi Campbell demanded more inclusion of black models as a part of the Diversity Coalition, they named names. Calvin Klein was one of the designers named, and five years later, the brand has added black models to their fall 2018 ad campaign. This is a small step, but a step nonetheless in the right direction. Additionally, with campaigns like #BlackModelsMatter that launched in 2015 (the phrase was seen on model Ashley Chew’s tote bag in 2015), this year the industry has seen its most racially diverse Fashion Week in history with the spring 2018 shows.
The recent push for inclusion aside, the fashion industry has all but shut out disabled models and consumers save for a few special occasions. Chelsea’s mother, Lisa, recalls being rejected when they first started looking for modeling agencies for Chelsea. “We contacted all sorts of agencies in San Francisco and L.A., and every one of them told us that there’s no market for a model with a disability.” Growing up, Jillian remembers never seeing disabled models in fashion or entertainment. “There wasn’t anyone who looked like me in any magazines or mainstream media, TV, or anything. It excluded me from something that I was very passionate about. It was definitely confusing because I knew my worth in the world. I knew that there’s [so many] people out there like me, but we are never included in any conversations.”
Disabled people and disabled models are still left out of most campaign ads and runway shows. This lack of representation has implications: When you go so long without seeing yourself it is easy to interpret that lack of representation to mean you’re ugly and unworthy, that you deserve to be invisible or even worse, are grotesque. The erasure can have an impact on your mental health.
hey um being sick isn’t a trend. me having to get an IV infusion once every 6 weeks of intense medication for my ulcerative colitis and IV hydration once every week because my heart rate is too high and my blood pressure’s too low from lupus isn’t fashion. nurses missing my veins and me walking around with bruises on my arms, isn’t fashion. me sleeping all day and missing out on things normal 23 year olds do isn’t fashion. this isn’t cute. this isn’t trendy. IV poles are part of our lives, we don’t get paid to wear a “sick” shirt and walk down a runway with a FAKE IV. Get a fucking grip, this is gross. (the designer is @maison_kimhekim the line is called “attention seekers” this was not meant to empower the ill, but to belittle us.)