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I'm Rasheera and I'm so excited to share my life, my passion and the lives of other "Beauties" with you! Learn all about my cause, get informed and get involved! It's time to start celebrating the beauty in being different! #celebrateddifferences!
BLOGGER. PHILANTHROPIST. ADVOCATE.
Rasheera Dopson’s blog, Beauty with a Twist, has a pointed title. She chronicles her experiences of living with a chronic health condition, having a disability, being Black, and living at the intersection of all those things. She’s also been a guest blogger for other people, publications, and the Children’s Craniofacial Association.
Rasheera is a 26-year-old woman who was born prematurely with Goldenhar syndrome, also known as oculo-auriculo-vertebral (OAV) syndrome, which is a rare congenital defect characterized by incomplete development of the ear, nose, soft palate, lip and mandible. She has co-occurring V.A.T.E.R. Syndrome. The initials in V.A.T.E.R. syndrome refer to five different areas: vertebrae, anus, trachea, esophagus, and renal (referring to the kidneys).
101. That’s the number of surgeries Rasheera has undergone at this point, including partial (but incomplete) reconstruction of an ear, heart surgery, reconstruction of her digestive system and anus, and removal of infected teeth. She’s had 52 surgeries on her digestive system alone. Having grown up in California one of three kids and the child of a single mother, Rasheera says much of her health care was covered by California’s Medicare system. Here in Georgia, where she’s been living as an adult since choosing to go to college here and then staying, she has not been so lucky. Additionally, the state of Georgia does not mandate that insurance companies must cover medically necessary procedures for congenital birth defects. “To be turned away from a hospital and doctors because of their not understanding my condition or disability—it was the most embarrassing, frustrating, angering, and shocking thing I think I’ve ever had to experience.” Last year, when she got very sick from an infection in her mouth and jaw, she had to return to California to get the operation she needed because all of the doctors qualified to do it were out of network. Because she was out of work for so long with the illness and surgery, she wound up losing her job, which meant she also lost her insurance.
Rasheera was being operated on every six weeks and most of her reconstructive surgeries occurred between the age of 7-10. At one point, her mom said they had to stop for a while because Rasheera was becoming weak. She had both a feeding tube and a tracheotomy at times and actually had to have open heart surgery at 7 because a heart valve became weakened due to an infection. She was also experiencing cyclic vomiting syndrome. Occasionally, she had to use a wheelchair because she lacked the strength to walk. Her mom said she needed to take a break from surgery, especially the anesthesia, and simply rest.
Without a Medicaid waiver, Rasheera sometimes struggles financially. “I feel like I’m in a gray area because I can work, but I still have a chronic health condition.” After she was not able to get her job back when she needed to have the surgery in California last year, she enrolled in the Bobby Dodd Institute and got an internship with the Federal Reserve through Vocational Rehab. “It’s always been difficult for me to find work and to find a company open to hiring me. Even though people say they don’t discriminate, sometimes they do.” She also has to work part-time at Chick-fil-a. She has applied for the Medicaid waiver many times and is always turned down. She feels like she got a pretty “hard no.” Rasheera would really like to write professionally and make her living from it, but she says she is afraid she wouldn’t be able to do that with enough financial support and, obviously, she needs benefits.
If she got to talk to a legislator directly, Rasheera would have some strong things to say, not all of which are about direct benefits to her. To start, she takes the bus, and she notices when she gets off the bus on the main road and walks back through the neighborhood to her house, there are no sidewalks. That’s true of the majority of DeKalb County in fact. “What if you had a person who had a disability, who’s in a wheelchair, who couldn’t access MARTA Mobility, but who had to take the bus? They wouldn’t be able to do that, why? Because there are no sidewalks in DeKalb County!”
Rasheera and other people like her find it important to have meaningful work, to be able to have self-fulfilling lives, to come out of the shadows. Going back to her blog, Beauty with a Twist, the subtitle Rasheera has chosen is “Let Your Difference Change The World.” That’s how she lives her life – every single day.