StoriesDec 2, 2019

Paving the Way and Defying the Odds: Will’s Story

“My story begins on May 31, 1978. My father was stationed in Sumpter, South Carolina while just coming back from serving in Vietnam. I was born prematurely just outside of Shaw Air Force Base. Due to my condition at the time, the physicians at the local hospital did not know what to do with me. So, they immediately sent me via helicopter to Columbia, South Carolina where I was properly treated for Spina Bifida, as a result of my father’s exposure to Agent Orange. 

Like many, my diagnosis was grim. I was essentially given until the age of two. However, due to adequate medical care along with loving parents, I was able to persevere. Looking back, having a loving and supportive family who taught me to work hard and that I could achieve anything regardless of my “big bowl awesome “truly helped shape me into who I am today. 

I do not feel bitter or upset by having Spina Bifida in any way, shape, or form. It is who I am and most importantly, it has shaped me into the person I am today. However, with that being said, I feel like I’d really didn’t have much of a choice in the matter. That is because of the reality I’m currently facing. I, like the majority of my fellow constituents, am a “guinea pig/trailblazer “of my condition. Therefore, we have been forced to speak up and make changes for future generations. Not only do we not have adequate healthcare, we often struggle with employment, adequate living conditions, and the daily nuances of living in an “able-bodied world “. It is very tiresome and mentally exhausting. That is what has brought me into the advocacy world. Simply trying to survive and to succeed. 

Luckily, we’re at a point where we have proven we can survive and succeed. Therefore, we have the opportunity to change the narrative. One of the many things that drive me as an advocate and an activist is the fact that expectant mothers with babies diagnosed with Spina Bifida are still getting the same narrative that my parents got over 40 years ago. Furthermore, some parents are still urged to abort the pregnancy due to the grim diagnosis that they receive. That is simply not the truth. To me, that is not only false but criminal. We are at a point where we not only can live a long and healthy life but can thrive and positively affect future generations. That is what drives me. Someday, when I take my last breath, I will be able to rest easy to know that my work and efforts will not be unnoticed. I will be able to have the opportunity to leave this world a better place than I originally found it.” – Will Dickey, Adult with Spina Bifida