Disabled, and on the catwalk: Why it means so much for one disabled woman to participate in Fashion Week
When I was first asked if I would like to model in designer Michael Kuluva’s Tumbler and Tipsy show during New York Fashion Week, I started to cry. Like many girls, I grew up wishing I could be one of those gorgeous models who make heads turn as they grace runways wearing the latest fashions most women only dream of having in their wardrobe. However, because I was diagnosed with severe juvenile rheumatoid arthritis at the age of two, I kept my desire to be a fashion model a secret.
Since the disease took quite a toll on my body over the years, I felt that I was in no shape to compete with women who embodied perfection. Aside from the fact I am extremely small in stature (I stand a mere 4’9” tall, just like Snooki), I rely on a wheelchair to get around. My range of motion is also limited due to many joint contractures and a neck fusion.
A child of the 80s, I grew up trying to pretend I didn’t have arthritis and refused to read self-help books or take part in any support groups. Fortunately, I experienced a major change in attitude during college and decided to embrace my condition. I soon began to advocate for those who are living with arthritis and worked tirelessly to educate others about the disease — both of which I continue to do today with support from many family members and friends.
As I gained more confidence, I went on to become a spokesperson for the Arthritis National Research Foundation (ANRF) and second vice president of the ANRF’s board of directors. I also authored the book “Juvenile Arthritis: The Ultimate Teen Guide,” which features Seth Ginsberg, co-founder of CreakyJoints and the Global Healthy Living Foundation.
Michael Kuluva announced he has arthritis a few years ago, I could not have been more excited that he chose to collaborate with Seth and CreakyJoints to raise awareness. Both Michael and Seth inspire me every day as they refuse to let arthritis get in the way of the amazing work they are doing. I also admire that Kuvula doesn’t just design clothes that look stunning, but that he also ensures that they are easy to put on for those who have physical limitations due to arthritis and other conditions.
And while some of the most famous models in the world will be featured at many of the New York Fashion Week shows again this year, the Tumbler and Tipsy show is bound to make one of the strongest impacts as Kuluva has chosen a more unique approach with his decision to foster inclusion by having three of us who have various forms of arthritis grace his show.
As I prepare for my New York fashion week debut, it’s encouraging to know that people like Kuluva are out there erasing stereotypes and making dreams come true.
Rouba-Boyd is a national spokesperson for the Arthritis National Research Foundation and a member of CreakyJoints.