by Kim Gatewood
Spina Bifida Awareness Month is observed every October to raise awareness, support individuals affected by Spina Bifida, and promote education. Spina Bifida is a condition that affects the spine and is usually apparent at birth. It is a difference in neural tube formation that may cause damage to the spinal cord and nerves, potentially affecting mobility, cognition, and other areas of development.
Spina Bifida Awareness Month aims to highlight the experiences of those living with this condition, promote understanding, and encourage community support. Sharing information about the number of babies born with this condition and providing resources for affected families.
It is classified into three main types:
- Spina Bifida Occulta
- Meningocele
- Myelomeningocele
The severity of spina bifida can range from mild to severe. Treatment may involve surgery to repair the spinal opening and ongoing care to manage symptoms throughout a person’s life.
For this month’s blog, I wanted to interview someone I know with Spina Bifida. I reached out to someone I have worked with, Sherice Smith.
Sherice is the Arkansas DD Network’s Statewide Self-Advocacy Coordinator.
She works for Arkansas’ UCEDD (University Center for Excellence in
Developmental Disabilities), University of Arkansas Partners in a position
that is funded through a partnership with the Governor’s Council on
Developmental Disabilities.
I asked Sherice four questions so that I could get to know Spina Bifida a little better.
QUESTION: Is there anything in particular you want to share about growing up with Spina Bifida?
SMITH: I grew up in the 70-80s when there wasn’t a lot of education or information about Spina Bifida so my parents were told not to expect me to live long or to have a great quality of life. As we know today this isn’t true
QUESTION: How did your parents help you understand your disability?
SMITH: I was in a somewhat unique situation. I have an older brother who has CP so disability was just a normal part of our life and conversations like the weather. They spoke in age appropriate terms and didn’t use too many technical words until I could understand. They explained what to look for should I start having issues and when we went to the doctor they let me talk in the doctor’s office and requested the doctor talk to me and not over me.
QUESTION: What was your experience going to school?
SMITH: Going to school was difficult because things weren’t always accessible to me and the school system didn’t always allow the law unless they were made to. My parents were always at the school about my IEP or IHP and making sure I was getting what I needed. My parents made sure I was at all the meetings because they understood I knew better than anyone what would make me a success student. Lucky I was in integrated classes most of the day and got to be around typical kids.
QUESTION: What is your top tip about working?
SMITH: The biggest tip I can give is be transparent with your employer. If you need something to do your job effectively tell them and work with them to find solutions.
Thanks to Sherice for sharing her story and allowing us to learn from her lived experience. You can learn more from the Spina Bifida Association at their website https://www.spinabifidaassociation.org/what-is-spina-bifida/
About the Author: Kimberly Gatewood is an administrative specialist for the Governor’s Council on Developmental Disabilities, an office of the Arkansas Department of Finance and Administration, where she works to advocate for the Arkansas developmental disability community while supporting the Council’s administrative staff and its members. In her role, Kim not only aids a professional administrative staff within the office but also participates in outreach activities in communities across the state. Kim is a native Arkansan, a person with disabilities, a Self-Advocate, and a disability advocate for her grandchildren and for others. She has served on a local service provider’s advocacy committee, encouraging others to participate in self-advocacy. Kim is a current board member for the Arkansas State Independent Living Council. When not hard at work in advocacy, Kim enjoys spending time with her grandchildren, going to the movies, attending church, and singing karaoke.
