The Spina Bifida Association website claims spina bifida affects about 165,000 Americans and is the nation’s most common permanently disabling birth defect. It occurs when a child’s spine doesn’t close during the first months of pregnancy. People with spina bifida usually require a brain shunt to drain excess cerebrospinal fluid.
In a telephone interview, 20-year-old Kara O’Daniel of St. Louis, Missouri, said: “I was born with spina bifida and have had 32 surgeries since then, including tendon transfers and most recently surgery on my bladder and intestines. Of those surgeries, many have been leg surgeries to help keep me able to walk.” She also has a learning disability affecting her reading comprehension and math abilities.
But early on, the surgeries and learning disability were the least of her problems. In fourth grade, for example, a girl in her elementary school learned Kara had spina bifida and wrongly accused her of being “mentally retarded.”
“Then all of a sudden everyone was saying I was mentally retarded and began treating me very differently,” said Kara. “They were rude and called me names. I have tried blocking out the memory. They called me a retard.”
Every day after school, she came home crying. Her grades nosedived. Finally, when Kara was in sixth grade, her mother and grandmother took matters into their own hands and started a Roman Catholic K-12 school for children with learning disabilities. It started with two students and has grown to 13. Kara graduated from The Academy of St. Louis in 2010.
She said, “When I went there, no one judged each other. I could concentrate on school work. I got all A’s in high school because I wasn’t worried about what people were saying and thinking about me.”
Now Kara has large dreams. A devout Roman Catholic, she has a motivational speaking ministry and has addressed audiences on topics such as acceptance of self, others, and struggles. Her family has been encouraging her all along.
As for beginning her ministry, she said: “One day I just thought I needed to begin sharing that people with disabilities can make a difference in the world. Just because they have a disability doesn’t mean they shouldn’t try hard. Also, people without disabilities need to be more accepting because people with disabilities have feelings too and should be treated equally and respectfully.”