Raising Awareness on the Runway I Took Ankylosing Spondylitis to New York Fashion Week BeingCharis

Being in front of the camera helped rebuild self-esteem and I began to love my body again, which surprised me. But, even more than enjoying being photographed, I uncovered a treasure trove of humanity behind the scenes. When I began sharing my story with Ankylosing Spondylitis (AS), I found many models, hair and makeup artists, designers, and photographers with their own stories of chronic disease.

We are by and large fed stories of health, ability, and perfection by the polished images we see of models on the runway or in magazines. We tend to believe models are perfect, healthy, able beings with happy lives. And in an industry known for celebrating a very narrow, specific type of beauty and body, nonconformity is ill-advised if you’re in the thick of it.

And I learned that by sharing my story of living with AS backstage, it gave others permission to share theirs with me of living with Lyme disease, Rheumatoid Arthritis (RA), Sickle Cell Anemia, Multiple Sclerosis (MS), and more.

Modeling became a physical platform for sharing my story, representing others with chronic diseases, and empowering others – in and out of the fashion world – to share their own stories, whether individually with me or with larger audiences. Casting Call

See, when my friend Latiya invited me early on to model with my wheelchair in her show in NY, I said yes immediately. There was no way I could refuse the opportunity to normalize the runway by using a wheelchair on it. However, the show producers refused to allow my chair on the runway, so I decided not to go. I had no energy to go head to head with the producers over their discriminatory decision.

It should be noted that I’m an unbelievably stubborn person; I put a lot of energy into ignoring red flags regarding my health. So, even with overwhelming evidence pointing to “ Don’t DO IT CHARIS,” my stubborn logic won: Say yes, reap the rewards, suffer the consequences later. Besides, if I said no this time, would my body even give me another chance?

More about Latiya, because her story is amazing: she’s is a single mother originally from Chicago, a Muslim convert who saw a niche market for her designs. Her vision of fitted covered fashion for all is bold and she believes in it with all her heart (not even exaggerating). I have modeled for American Umma (Latiya’s brand) in several shows, but this was her first time showing in New York. Image by Frans Loriaux. Modeling for Latiya in 2015

Michael is a former professional figure skater who learned he had Rheumatoid Arthritis (RA) during fashion design school, when he was 28. Many of the clothes he designs through his brand, Tumbler & Tipsy, are accessible for people with arthritis and other mobility challenges and almost all of the items are so comfortable you feel like you’re in your pajamas all day.

It didn’t hurt that brushing shoulders with famous personalities meant my advocacy might rub off on some of their followers. You can call it advocacy by celebrity proxy: if I was lucky, because Amanda Lepore has 330,000 followers on Instagram, I might reach .03% of them by posting a picture of us together. Amanda Lepore and me backstage before the show

When I flew across the country to New York on a Friday morning I had not yet fully grasped the significance of what I was doing. It was only after I landed and caught a Lyft to my friend Sal’s studio apartment – by the way, she also has AS – that I realized the significance of representing people with Ankylosing Spondylitis during NY Fashion Week.

Backstage on show day was extremely fast-paced and high energy: it was efficient, the opposite of what I’m used to. All I had to do was arrive on time, ready to model. My body was grateful not to be waiting all day in a cold warehouse with nothing to eat (many shows are like that). I slept in, took my time waking up, and spent less time and energy overall doing the actual work of modeling.

However, that fast-paced environment was anxiety-inducing. I had to be on my toes, and every direction I looked something different was happening. I discovered how much multitasking truly takes place during a highly efficient fashion show. If you’ve ever rubbed your belly and patted your head at the same time you’ll understand: one person was doing my makeup while three people were painting my nails.

“How on earth did I get here?” I wondered while dozens of cameras suddenly swarmed five feet away. My pain was creeping into consciousness now that the actual show as done. When a photographer gestured me out of the way so he could take pictures of Amanda Lepore alone – “Ah, yes, I don’t belong here!” I laughed inside, “Get me out of these heels!” The Real Behind the Scenes: The Day(s) After

I model for something bigger than myself; I model to build name recognition for a disease that, while not rare, is largely unheard of. There’s a different kind of confidence and drive that comes from representing millions of people whose pain and fatigue needs to be heard. When I’m on the runway, I’m not there to impress anybody. I’m not there to walk for me. I’m not trying to land a big contract or sign onto a big label (although that would be nice). I’m there for my community.

I’m not an optimist, I’m a realist. Which means I don’t sugarcoat what I live with. I don’t hide behind a façade of health. I’m open about the pain and the fatigue – it f**king sucks. But I’ve also found a way to live, not just survive, in between the parts where it truly feels like I’m dying, and I’ve found a way to make my disease visible even while doing things I enjoy.

Find the thing that makes you feel alive, whether it’s reading, listening to music, being with friends, modeling, creating art, running, or karaoke or going to Burning Man. Find the accommodations that make that thing work for you. Do it when you can, how you can, for as long as you can. And when you can’t anymore, remember to save the pictures so you can look back on what you did and say,