“Someone recently thanked me for being so open about my health, as it gave them the courage to talk about their own. This made me pause and reflect on my own journey to how I got to where I am today. As a kid, I was always angry when people asked if I injured myself. I was angry that I would always be seen as different from my classmates because of my brace. I am not injured. I was born this way. A counselor finally told me that I had to get over it. I needed to find a way to answer the question in a way that I was comfortable with, that would not alienate the person asking. Over time, I realized she was right. Following educational and job opportunities, I moved to new places where no one knew my past. While I didn’t have to share a lot of details – my response needed to be more than “I didn’t hurt myself.” 

Learning how to talk about my disability helped me grow up. As a teenager, I chose the following eight words to say – “I was born with Spina Bifida and Diastematomyelia.” I still use those words today. Sometimes people ask me more questions, but most times they don’t. 

I’m always willing to answer questions about my disability, but I don’t usually offer details about that part of me unless asked. It’s a small component of my much larger story. Spina bifida is a part of my past, my present, and my future but it’s not what defines me.” – Sarah O’Connor, adult with Spina Bifida