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Nicole Small is a 24-year-old woman living with spina bifida. She hopes to become an advocate for people with spina bifida. She wants to help others understand this disability and to encourage those living with spina bifida to embrace their abilities, just as she has. Nicole lives in Florida with her parents.
Q: What is spina bifida? How is myelomeningocele different from other types of spina bifida?
A: Spina bifida literally means “split spine.” Spina bifida happens when a baby is in the womb and the spinal column does not close all of the way.
Myelomeningocele is the most severe form of spina bifida. With this condition, part of the spinal cord and nerves come through an opening in the baby's back. It causes nerve damage and other disabilities. Most children with this condition also have hydrocephalus, a buildup of fluid around the brain. This happens if the fluid that protects the brain and spinal cord is unable to drain as it should. The fluid builds up, causing pressure and swelling. If it's not treated, it may lead to brain damage.
Q: What was it like growing up with spina bifida?
A: There is really only one word that best describes my experience growing up with spina bifida, and that word is “difficult.” I chose that word because growing up with spina bifida was a learning experience for me and my family. My parents and I had to learn about this disability and everything that came along with it. I was also in and out of the hospital for a variety of surgeries for the first seven years of my life. This caused me to fall behind in school because I would miss so much while I was away. I didn't have anyone at school I could turn to who would understand my situation and help me with my academics. On top of everything, I was bullied by kids because they did not know my full story. It also felt like they did not care to learn about my story or to get to know me on a different level.
Q: Have you ever experienced discrimination because of your disability?
A: If I have experienced discrimination, I did not see it that way. I just see it as my need to take things down a different path. I have to do what best suits me and my lifestyle. The short of it is, I adapt and do what works best for me, not only as a disabled person, but as a person in general.
Q: What motivates you to overcome challenges that you face?
A: I've found that the stereotype attached to people with disabilities is that we cannot do anything in life because we have a disability. In my experience, this is the farthest thing from the truth. You work with what you have, and that is how I have always lived my life. I have often wondered, if they invented some kind of tool or if there was a surgery that would miraculously make me walk, would I try it? The simple answer is no. I have built a beautiful life for myself as a disabled person. God made me this way for a reason, so I have no choice but to embrace it.
Q: Can you tell us about your future goals?
A: I would like to continue to advocate for people in my situation. I would also like to give advice to parents of children with spina bifida and tell them about the tools that are available to help them. I want to help families along this tough road.
Q: Some people may feel uncomfortable around people with disabilities because they're worried they'll say the wrong thing. What advice would you give them?
A: Don't be afraid to ask questions.
Q: What advice can you give to other women who are living with disabilities?
A: Just because you were diagnosed with a specific disability, don't let it bring you down. Rise above all of your obstacles. Prove to everyone in your path that people with disabilities are capable of anything they set their minds to. We can do anything anyone else can, just in a different way.
Q: Is there anything else you'd like to share?
A: Do not sit around feeling sorry for yourself or become mad at God for making you this specific way. Remember, we are all put on this Earth for a specific purpose, and it is up to you to decide what your purpose in life is and fulfill it to the best of your ability. We only live once, so we only have one opportunity to leave a lifelong impression on others who will come after us.
I leave you with these two final questions: What do you want people to say about you when God calls you to join him? What do you want your legacy as a disabled individual to be?
To learn more about parenting a child with a disability, visit the Illnesses and Disabilities section of womenshealth.gov.
To learn more about your rights and the Americans with Disabilities Act, visit the Your rights page.
The statements and opinions in this interview are those of the interviewee and do not necessarily represent the views of the U.S. Department of Health and Human Services' Office on Women's Health.
Content last updated December 02, 2013.