What It Means to Be a Disabled Craniofacial Model

It is 2022, and we still do not see a representation of people born with craniofacial conditions in the entertainment industry. We are still being shadowed by the very demons that continue to make us feel alone.

The “Chucky” series on Syfy represents more inclusion than I have ever seen. It feels good to see multiracial and gender diversity in films that depict the very times we live in. In addition, the series highlights the detrimental effects of bullying and how having that one “Good Guy” as your friend would mean the world among children who are outcasted and bullied. Still, I think it’s wildly unfair to see films without people with disabilities in them, and it baffles me why things still have not changed.

Why are we sitting on the sidelines and not speaking up for what needs to change? I won’t get into why I was so turned off by the movie “Wonder,” and even then, I had given up and settled for accepting that we need to allow the “real talent to come in.”

I accepted that we were born this way, and sometimes that is just reality. I accepted that we might not be worthy or capable of achieving such talent on modeling runways or in films. I accepted that it must be cheaper and easier to pay hundreds of thousands of dollars to physically mold actors without craniofacial conditions to look and act like us. Well, if that isn’t the stupidest shit I have ever heard myself say.

I think it’s time for the disability communities to band together and demand the respect and changes needed in the entertainment industry. We have to work towards building on real talents and voice aloud that we want to showcase our abilities too. Nothing will ever change if we don’t start demanding it. Like consumerism, the power is in the customer’s hands; therefore, we must demand.

I have been through more traumas than most people could ever imagine. Yet, somehow God gave me a purpose and helped me make my way through. I can vividly remember the tears after my lights had been knocked out by my peers at school and then just for it to happen again at home. I had developed many sexual curiosities because of the vast sexual abuse I suffered at the hands of my step-father, a registered sex offender employed by the government. I was born physically deformed, and no one could accept that, so I remained without identity for many years into adulthood.

I remember leaving my hearing aid on and falling asleep to the Beatles. I always held onto that “all we need is love.” I am grateful for music, TV, and film. Despite the lack of representation among people with disabilities, I have always found a way to relate and cope with some of the pain. The physical pains of numerous plastic surgeries also allowed me to numb, rinse, and repeat, all in the name to attain beauty. My goal was to become beauteous and in the likes of those who I saw on television.

A few years ago, I came across a highly offensive marketing campaign launched by Smile Train. It was a motivational message to parents to “turn your child’s Halloween screams into their biggest dreams.” That statement resonated with my haunting past. I wanted beauty and acceptance more than anyone could know. Unfortunately, when you are born physically deformed, bullying becomes your daily norm. My school peers said that this holiday was the only time I could get away with not wearing a mask.

Being born different has a way of making you feel defeated before any war begins. The battles within your heart are razor-sharp and almost too painful to deal with. My biggest dreams were to replace my face. By the age of 12, I had planned to go through numerous plastic surgeries fixing piece by piece until I felt not broken anymore.

As a child, I remember buying myself holiday grams to show people that I was lovable. Even some of my teachers snickered when handing them out to me. Deep down, I always wanted to be brave enough to take the easy way out. I didn’t want to be here, and death always sounded like a much easier option.

For me, life was torturous; at home, I endured abuse and neglect, and school was only more of a burden. I had been trapped in a space I could not escape. I acted out in mischievous ways and, in some ways, criminal. I just wanted to escape and replace my disgraced face. I remember practicing acting in front of the mirror, only hoping that one day it would become my reality. I wouldn’t have to live by these societal standards anymore because I deserved better.

I was born unlovable, and it caused significant feelings of abandonment throughout my life. I was regularly mocked and ridiculed because of my severe speech impediment. I never felt good enough. I wanted to be the best daughter, but life had spared me no chances. I wanted to be the best friend, but I had been a mockery statement among everyone. I wanted to be the best girlfriend, but I had a face only my mother could love, or so I thought.

I wanted so many different things, but rejection and fear knocked me down every time. I had constantly tried molding myself into the standards of societal expectations. I remember the tears and looking at the Hollywood stars posters on my wall, and I said one day I’ll show all these hateful people what I am really made of. Again, I just wanted to escape and replace my disgraced face.

I struggled through many tears and fears to get where I am today. As a high-school and college dropout, and after a slew of over 60 jobs under my name, I couldn’t find stability even if it called for me. I wouldn’t have heard it anyway.

One day I met the man of my dreams, someone who believed in me, and he said I could do anything my heart desired. He told me to go back to college, so I did, and now 15 years later, I am pursuing a Ph.D. in Business Administration and Marketing at Capella University. Since being enrolled in higher education, I have achieved an Associates’s Degree, Bachelor’s, and two Master’s Degrees, all in different subjects.

Today, I am the CFO of a corporation that is scaling into the millions. I take the time and energy to train hundreds of students because I know how it feels to be ignored and neglected by societal expectations, not only as someone with a disability but as a student intern.

I am also a disabled fashion model for the celebrity organization Kiss the Monkeys. These people saw me for my internal and external beauty, and they gave me a chance to deliver. We went from attending these events to becoming a part of planning them with the founders. I recruited three other disabled runway models in our last show at the famous toy store FAO Schwarz in New York. Not everyone is into sharing, but it has become a deep part of my passion because no one cared to do the same for me.

It’s OK to feel lost; you’re not the only one navigating these rough waters. It’s OK to fear change; not everyone is fit for growth. It’s OK to hurt; what doesn’t kill you makes you stronger. It’s OK to be a human with feelings; no one is perfect. It’s OK to take a break to reflect; the journey is not always clear. It’s OK to not relate to others during these uncertain times; being a kinder person costs nothing; being fake and in denial will cost you everything.

If you outgrow the people in your circle, it will hurt to change, but it’s necessary to move along with the wind, so you can accomplish what you are really inspired to become. Every season will carry a different reason, and it’s not for immediate understanding either.

I may not come from the other side of the tracks, but I was living on them. I do not know a life of poverty, but I know one without love. Still today, I have an enormous-sized unstable family that can’t bear the sight of me. I am the black sheep, and if you are reading this, you are likely one too. I always thought I had deserved being unlovable until I stood up for myself, and I slammed the door on everyone I knew. I created a brand new life with my husband, and we molded and changed together after adopting a plant-based diet.

You won’t always understand the trials and tribulations life serves you, especially as a child. Protect yourself and your interests. Always be loyal and kind, regardless of your differences. Take a hard look at what you want to accomplish in life, and work towards building on it. Don’t give up. Through a will, there is always a way.