What I Want Doctors to Remember This National Birth Defect Prevention Month
Growing up I heard the word “defect” all of the time. It was often associated with my medical condition. When doctors would go down my long list of medical conditions, they would list all the defects I was born with. As I got older, the word “defect” and “deformed” became a part of my subconscious vocabulary. Even though I knew I had a deformity and was born with a defect, I began to associate myself with “being defective.” I unknowingly took on a mindset that all there was to me, was my medical condition.
Nevertheless, as I grew older, I realized I needed to change my language and begin to separate myself from my diagnosis. I began to intentionally change my language — using the word “difference” instead. I never realized the havoc one word could wreak on my self-esteem and image until I switched my vocabulary. How could a single like “defect” word have such a negative impact?
The month of January is National Birth Defect Prevention month, and I want us to remember the power of words, especially in the medical community. Although there are technical reasons why certain words are important, these terminologies don’t have to be translated into our social context. For me, I use the word “difference” over “defect” because although I was born with a defect, it does not mean I am defective. For too long a time, society has used the two interchangeably.
Many of us have carried the assumption that if you have a condition or disability, then that is who you are. This type of thinking is not only limiting, but it is so from the truth. We are not our disabilities, and we are not just our abilities. I’m continuing to learn through education, self-empowerment and discovering my identity through G-d, that although I have a medical defect, it does not make me defective or lesser than.
As we charter on in the month of January, let’s continue to change our language and how we relate to the people around us. Let’s continue to dig deeper into valuable conversations about those in this community who often feel bound by their conditions and diagnosis. I am one in 33, and even though I was born with a defect, it does not make me defective. I choose to embrace my differences, and hope others will too.
Rasheera Dopson is the founder of two organizations: The Beauty with a Twist brand and The Dopson Foundation Inc. Both organizations are dedicated to creating spaces of inclusion for women and girls with disabilities. Born with two rare diseases: GoldenHar Syndrome and Vater Syndrome, Rasheera has had 103 surgeries over the course of her life. Identifying as a woman with a disability, Rasheera also understands the concept of intersectionality. Not only has she built her own platforms to help bridge the gaps of health inequities within her own community but she has partnered and collaborated with many other medical care teams, hospital systems, organizations, and patient-led initiatives as well. Her most recent work has been featured expert with the University of Pittsburg Medical Center (UMPC) in their webinar series on Race & Disability, NORD ( National Organization of Rare Disease) Patient & Forum work can be seen among patient-focused organizations and initiatives such as; The Children Craniofacial Association(CCA), FACES National Association of Craniofacial Conditions, The Georgia Council of Developmental Disabilities (GCDD), NORD, Global Genes network, The Every life Foundation, Rare Advocacy Movement, and many others. In 2020 Rasheera completed a fellowship program at Georgia State University in which she participated in their Center of Disability Leadership LEND program ( Leadership in Education and Neurodevelopmental Disabilities). She has spoken on several panels and helps to lead various sessions and webinars surrounding patient advocacy, disability education, and even empowerment for women and girls. This fall Rasheera will be starting her master’s program as a student at Morehouse School of Medicine with a concentration in Public Health and Community Education. Although Rasheera has an impressive portfolio, her true passion is to simply be a voice and leader in her community and to improve access and achieve health equality for all. Contact info: www.beautywithatwist.org info@thedopsonfoundation.com
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