Every parent knows the joy of expecting their precious, perfect baby... and then the moment finally comes to meet their little one! Now imagine: seeing your baby for the first time, spine entirely exposed and hearing two dreaded words: spina bifida.
26 years ago, this was the scene of my entrance into the world. Not being a parent myself, I cannot relate to what they must have felt, but I can only imagine the thoughts that go through a new parent's mind at that moment.
What will my child's future look like--school, college, career, independence? What about society's reaction to their birth defect? What effect will that have on their mental health? These are all very real issues and I hope to cover most, if not all of these areas.
SPINA BIFIDA AND EDUCATION
The topic of education for children (as well as adults) with spina bifida is a complicated one. Almost all babies born with spina bifida also have hydrocephalus, which basically means that there is extra cerebrospinal fluid in the brain that is not draining properly.
A VP shunt is then surgically placed to aid in draining the fluid, but as a result varying degrees of learning challenges present themselves. Every case is unique, and the learning challenges widely vary in severity. In my early education days, I was fortunate to have some more mild problems (but significant nonetheless). Occasionally I would need some minor accommodations, such as extended deadlines for big projects, but I was able to do grade level work.
Although I had occasional frustrations, I didn't notice just how significant my learning challenges really were until I started college. My first classes were remedial 90 level classes which, with the exception of the reading classes, went fairly smoothly. The real trouble started when I began the college level courses. I got overwhelmed very quickly and, after many unsuccessful attempts, made the hard decision that college was just not the best route for me.
SPINA BIFIDA AND EMPLOYMENT
All of these education-related obstacles leads me to my next point: employment.
Being an adult with a disability in the employment world is not an easy quest by any means. Many employers prefer to hire candidates with college degrees, which makes it more difficult for those of us who do not have one.
Proving my equal ability to perform job tasks, despite my disability has been without a doubt the most frustrating process that I have ever experienced. We, in the spina bifida community, are equally capable of performing job duties just as well as any able-bodied adult and my hope is that someday that will be recognized in all places of employment.
SPINA BIFIDA AND MENTAL HEALTH
My final area of focus is society's attitudes and reactions towards those with disabilities, and the impact that it can have on one's mental health, which again is an individual experience that is unique to each person. Many disabled young children and teenagers can experience quite a lot of bullying in school which, at critical points in their lives, can lead to a negative self esteem.
Due to this very issue, mental health challenges such as depression and anxiety are fairly prevalent in the disability community. Beyond the realm of public school, bullying and prejudice can also happen in the general public leading to the same issues.
I would love nothing more than to see things change to create a more accepting world for ALL people. There is definitely much work to be done still but I truly believe, with more disability education and awareness, it will be possible.
What's your experience with ableism? Share your thoughts in the comments!
Guest Blogger: Rachel Turcotte
Rachel was born in Tacoma, Washington, raised in Olympia since she was four years old. Although she isn't currently active in either, her two biggest loves are music and sports.
She got involved in wheelchair sports when she was very young, starting out in track and field, then started playing wheelchair basketball when she was 10. She participated in band for several years at school and enjoyed 11 years of piano lessons.
In her free time, Rachel also enjoy reading, watching movies and spending time with friends.