The following post was written by Chelsea, a diversity advocate, writer, creative, and college student from the blind and visually impaired community. In this post, Chelsea shares her love for fashion, the confidence it gave her, and why she's working towards building an industry that is inclusive of all.
"Very rare", the geneticist said, confirming my medical diagnoses. Oculofaciocardiodental, otherwise known as the label that makes me one in a million.
Oculofaciocardiodental, or OFCD, is a rare genetic disorder that appears in less than 1 in 1 million females. This disorder stems from a mutation in the BCOR gene, causing alterations within the eyes (oculo), face (facio), heart (cardio), and teeth (dental). While my journey began as soon as I took my first few breaths of life, one thing I have taken away from my experience is the meaning of growth; the ongoing and ever-changing adaptation every season of life brings.
After a failed cataract surgery in my right eye at 7 weeks old, I have had to rely on the limited vision I have in my left eye. I endured nearly twenty surgeries before the time I turned one, along with open-heart surgery at the age of 9 and a number of surgeries outside of these, as well. What added to my challenging case was the doctors’ uncertainty about my future. Let alone the question of my ability to ride a bike or drive, numerous doctors were unclear about whether I would be able to see after my various procedures and treatments. While the vision I had was all I knew at the time, I still had to figure out how to learn the world around me just as every other kid. With one eye comes great difficulties, such as a great lack of depth perception and a major blind spot, which made me have to learn to compensate and improvise what most people can do with two eyes.
Aside from the extensive medical journey came the many negative social factors alongside it. I have experienced a lifetime of stares, remarks, questions, and comments, all due to something I have absolutely no control over. I would undoubtedly identify this part of my journey as the hardest area to fully accept and heal from.
While, of course, every individual is different, diversity hasn’t always been accepted, welcomed, and included in society. Continuously receiving looks and second glances is not something that one can easily become comfortable with and accustomed to. Such experiences often leave me asking myself, “Am I THAT different? Does everyone think this way about me?”. These situations have ultimately allowed me to discover that the most profound influence one can bring to the table is their story. Stories have the power and beauty to be completely authentic and unique to the individual. They can serve to educate, inspire, connect, and offer hope to every individual it is shared with.
A consistent pattern I have found throughout my life has been the comfort of turning to the creative outlet within me during challenging times. This outlet has allowed me to find the freedom to freely express the highs and lows of my journey and to truly find myself through this creativity as well. These experiences have enabled me to grow a deep passion for the concept of expressionism. Ever since I was a kid, I always had strong interests in clothing, style, and fashion.
I discovered that fashion was the one area in which I could fully express myself without any limitations. No matter what medical hurdle I was currently facing, fashion was my place of security. I felt as though I was always able to turn to fashion to be able to feel beautiful, comfortable, and confident.
Because I had little control over my medical circumstances, I did have a choice in what I wore and how I was able to represent myself to the world. Through this, I decided to further pursue this passion of mine by pursuing a fashion minor in college.
Because of my university’s dynamic program, I have been able to dive into and specifically focus on the social aspects of fashion. Through various classes, thorough research, and a strong passion for diversity, I have become deeply educated on both the lack of, and the desperate need for, diversity, equity, and inclusion within the fashion industry. The disability community makes up nearly 15% of the world’s population, totalling out to not only be the world’s largest minority group but the one minority group of which any individual can become a part of at any point in their life.
Unfortunately, within this large minority group comes to the unsettling data showing that only 0.02% of individuals with disabilities are represented within the fashion industry.
This lack of inclusivity has resulted in a poor portrayal of accurately representing all of society. When anyone takes a step outside in the world, we don’t just see stereotypical cover models walking around; we see people of all races, ethnicities, sexualities, genders, and abilities; we see society. My hope is to be a part of and to witness the transformation of one of the most powerful industries in the world. I hope to see the fashion industry finally represent and include all of society rather than just who the world sees fit to be included.
All of my life I have faced exclusion, discrimination, and have been looked down upon because of my condition. Through my experiences, I have learned that as everyone has scars, I just happen to visibly wear mine for the world to see.
This comes as a blessing in disguise as it allows for my story to tell itself to the world and to the people around me. While it’s an unsettling feeling to often be reminded of my disability even when I’ve come to a season of acceptance, I’ve come to use it as an opportunity to share my story and to provide education to those around me who may not have experience with certain disabilities or differences. A close friend of mine often remarked how as people see the world in black and white, I see it in color. I hope to share my experiences with others to educate the world about disabilities to help create a more inclusive world. When it comes down to it, there’s only one true version of each individual, so we might as well embrace our uniqueness in its fullness!
To learn more about Chelsea visit:
Podcast: Eye Am