My name is Rasheera Dopson I’m 28 years old and I was born with two rare diseases, GoldenHar Syndrome and VaterL syndrome. Both of these conditions consist of congenital anomalies and birth defects. Over the course of my life, I’ve had 103 surgeries. Now I am a disability advocate.
My single mother raised me along with my two older siblings in the California bay area. We didn’t have a lot of money – we were the average median income African American family. Life was good enough that I grew up thinking the world was at my fingertips, that I could do anything, and that anything would be possible for me. That dream began to fade when I hit 18. The lights went out when I moved to Georgia at 25.
CARE: CHILDHOOD vs ADULTHOOD
I had gone from living as a hopeful child with a chronic health condition to an adult fighting for basic rights such as access to health care and inclusion in all parts of society (social, employment, community, etc.). Due to the rareness of my condition I had to find doctors wherever I could, meaning they were often outside of my health insurance networks. I paid a lot out of pocket and had to travel out of state to find experts. My insurance denied many procedures because they did not recognize the type of condition and disability I had.
As a child, resources were so accessible. Doctor’s only saw a disabled child who needed care, not what I looked like. In adulthood, my disability was no longer the focus; the focus became my functionality. I was faced with awkward stares and ludicrous assumptions. Combining that challenge with the sudden lack of compassion and care was hard to adjust to.
A CONSTANT FIGHT
In one instance, I got sick and had to take a leave from my job and go on short-term disability. I fought my employer and my employee health insurance (Cigna) for almost a year to collect the balance of my disability benefits. As a result, I went nearly a year without any type of income or support. I couldn’t qualify for a Medicaid waiver because Georgia does not recognize my disability or rare disease. Despite being born with a condition that affects me every day of my life, I can’t qualify for health coverage.
From finding employment to accessing affordable quality healthcare, it was a constant fight. I used to think “Why was society so much against me?” But society wasn’t against me. I was facing the broken perception society had of disability. People who are disabled are unable to do what everyone else does. That perception is wrong. I knew it was my life’s goal to change how people relate to people with disabilities. All my pain and suffering became fuel for my fire to make a difference for my community. I became the voice I knew my community needed.
Taking on this challenge has not been easy for me, but it’s worth it because it’s necessary!
MY DISABILITY VOICE AT WORK
In 2016 I began to partner with the Children’s Craniofacial Association. As a member of their speaker’s bureau I visit schools across my state to talk about acceptance and kindness. Soon I also became a Young Adult Representative of the Rare Disease Legislative Advocates, supported by the EveryLife Foundation – a global organization dedicated to research and advocacy for Rare Disease patients. I have made trips to Washington D.C., advocated on Capitol Hill and spoken with state Representatives about Rare Disease issues. I also advocate in my home state of Georgia, where I am staffed and partner with different organizations such as the Georgia Council of Developmental Disabilities, and the GaLend Program of Georgia State University. These organizations provide education, accessible resources, and leadership within Georgia’s disability communities. I’m just getting started but I love the work.
I’ve also created my own personal platform called “Beauty with a Twist” because I saw how something was missing in our world. I needed to see more Difference. Inspired from my own personal journey struggling with low-self-esteem, I took action. There is a need to hear the voices that push back against conventional beauty, who appreciate the beauty of Difference.
THE FUTURE OF ADVOCACY
Work still needs to be done. Big parts of our culture still shut out disability voices. So now, through advocacy, education and awareness, I make sure disability voices are part of the decisions that affect our lives.
Rasheera Dopson is an advocate and motivational speaker who currently resides in Atlanta Georgia. With a Bachelor’s of Arts Degree in English literature, writing has been the foundation of Rasheera’s career. In 2016 she launched the Beauty with a Twist brand – an online platform encouraging women with facial differences and disabilities. She has spoken for Rare Disease Day at the Georgia State Capitol, partnered with the Children’s Craniofacial Association and is a member of their speaker’s bureau, and has been a guest on Jamie Grace’s podcast- I AM A FIGHTER. Rasheera is currently a writer for the Georgia Council of Developmental Disabilities. When she is not busy writing or advocating on capitol hill, you can find her serving at her home church and hanging out with close friends and family. www.beautywithatwist.org / Instagram