Golden Har Syndrome & Vater’s syndrome
My name is Rasheera Dopson. I’m 28 years old and I was born with two rare diseases: Golden Har Syndrome and Vater’s syndrome. Both of these conditions consist of congenital anomalies and birth defects. Over the course of my life, I’ve had 103 surgeries. I was raised by my single mother along with my two older siblings. We didn’t have a lot of money but we were the average median income African American family. I grew up thinking the world was at my fingertips and that I could do anything, and that anything was possible. Nevertheless, that bubble quickly burst when I turned 18 when I realized the world was not my oyster.
the impact of having a disability
I didn’t realize the impact of having a disability and a chronic health condition would have on my life until I became an adult. It was like when I hit 18 the lights were cut down and when I turned 25, the lights were completely turned off. I began to experience the harsh reality of being an adult with a chronic health condition and disability and how many invisible barriers I had to face and overcome. I fell into what seemed like a mush pit of a grey area. I went from living life as a child with a chronic health condition to an adult fighting for basic rights such as access to health care and inclusion. Due to the rareness of my condition and many doctors who were able to treat me where outside of my healthcare plan and networks, so I was forced to pay a lot of out of pocket costs and travel out of state to find a doctor willing to treat me. I was denied many medically procedures by my insurance company because they did not recognize the type of condition and disability I had.
Fighting for Health Insurance
In one instance, I was sick and had to take a leave from my job and go on short-term disability. I fought them for almost a year in collecting the balance of my benefits. I went a year without any type of income or support because my state does not recognize my disability or rare disease. I did not qualify for a Medicaid wavier so even now currently, I do not have health coverage even though the chronic sickness and disability I have I was born with.
Sick child vs. Sick Adult
When I was a child all of the barriers that people with disabilities faced were oblivious to me because resources were so accessible. Doctor’s didn’t care what condition I had or what I looked like, the only thing that they saw was a child who was sick and had a disability. They clung to my needs and made sure everything was taken care. But like I said, that all changed the second I became an adult. My disability no longer became the center of focus but my functionality became the topic of conversation. Instead of people meeting me and wanting to get to know who I am and what I was capable of I was faced with awkward stares and ludicrous assumptions. I never so much in my life felt the need to prove my capability until I became an adult who just so happened to have a disability.
why was society against me?
From things like employment to accessing healthcare, it was all a struggle and it all seemed like a constant fight. I used to think “ why was society so much against me?” But then I realized that it wasn’t me so much society was against, but it was the perception of disability- that is people who are disabled can only do so much. Nevertheless, once I came to the realization that this perception was wrong, I knew it was my life’s goal to change how people see and relate to people with disabilities… people who are different. I took all the pain and suffering I endured and began to let it fuel my fire to making a difference for my community. To be the voice I knew my community needed. Taking on this challenge by no means had been easy but for me, it will always be worth it because it is so necessary!
Rare Disease & Disabilities Advocate
In 2016 I began to partner with organizations related to my specific medical condition and disability called the Children’s Craniofacial Association. I am currently apart of their speaker's bureau and speak to schools across my state and local regions to talk about acceptance and kindness. I also am a part of another organization called YARR (Young Adult Representative). This organization is funded and backed by the EveryLife Foundation, which is a global organization dedicated to research and advocacy for individuals apart of the Rare Disease community. I have made trips to Washington D.C. and advocated on Capitol Hill and have spoken with state Legislators and Representatives about Rare Disease issues. I also do some advocacy work within my own state of Georiga where I am staffed and partnered with different organizations such as the Georgia Council of Developmental Disabilities, and the GaLend Program via Georgia State University. These organizations and educational programs are all geared to providing education, accessible resources, and Leadership within the disability community in Georgia. I absolutely love the work that I do and I feel like I’m just getting started.
Beauty with a Twist
I’ve also created my own personal platform called Beauty with a Twist (www.beautywithatwist.org) because I saw how something was missing in our world. I needed to see more Difference. Inspired from my own personal journey in struggling with low-self esteem due to having a disability, I knew we needed more voices like mine. Voices that went against the standard of beauty, voices that appreciated the beauty in difference. From building this platform, I received a great response from individuals wanting their story to be told. However, I also noticed that although representation is important there was still so much work to be done. Disability voices were still being shut out from certain areas in our culture. I knew we had to change that. Now it is my goal through advocacy, education, and awareness to bring disability voices to the table and help make decisions that affect our lives.
