Lessening the Stigma of Spina Bifida
My name is Lauren Bendik, I'm 27, and I was born with Spina Bifida (L5-S1). Everyone who has Spina Bifida has a different story, so let me tell you mine. I used a walker/Fisher Price shopping cart toy until I was about four years old. I currently walk independently with leg braces/AFOs, except for long distances, when I prefer a mobility scooter. I also have a shunt for hydrocephalus that was placed when I was a few months old. Luckily, I have never had a revision!
Another aspect of Spina Bifida that affects me is that I lack bladder and bowel control. This is the most problematic aspect of Spina Bifida to me; the stigma of experiencing incontinence over the age of around five in society is huge. It contributes to a lack of self-confidence, anxiety, and depression. Growing up, I missed out on overnight school trips, sleepovers, and just generally felt very self-conscious. God forbid another child found out! Even today, I have trouble building intimate relationships.
One of my goals as a social worker (I graduated magna cum laude with an MSW!) is to lessen the stigma of incontinence through spreading awareness and learning to be fearless myself. I am not there yet, but I am dipping my toe in the water, I suppose, by writing this. I spoke at the Spina Bifida Association's National Conference last year on the topic of mental health in the disability community, and felt so fulfilled. I was so nervous, but I knew that this was a great opportunity to make a difference. I hope to continue to speak in the future.
Just Do It: Spina Bifida Doesn't Stop Me
I have always made it a point in my life to not let Spina Bifida stop me from doing what I want to do. It's not my fault I have it, right? I taught myself to ride a bike just a few years ago, went surfing with a great organization called Life Rolls On in 2015 (I might need several years to pass before I try that again lol), and learned to ride a skateboard on my knees last year. It's funny because I am by no means a thrill-seeker; I've had an anxiety disorder since I as a kid. I vow to never go on a rollercoaster and can't get myself to drive to the mountains. However, sometimes you just need to be brave and try something, like dropping down a ramp on a skateboard on going into the ocean for the first time on a surfboard. Do it before you overthink it.
Recently, I picked up wheelchair tennis. I've always been a competitive person (you should see me in air hockey) so I am happy to finally have the chance to play competitive sports! When I was a kid, my family didn't know about all the amazing opportunities there were/are for people with disabilities to be active and engaged. I didn't even meet another person with Spina Bifida until college. Now, I throw myself into whatever chance I get to participate.
There is no better feeling than the feeling you have when you belong somewhere. I urge all parents of children with disabilities to put their children in dance, sports, and other social clubs from a young age. Their confidence will sore! And, adults, it is never too late. There is just something special about not having to feel like you have secrets amongst friends like yourself. Go to conferences, start a support group, and mentor youth with disabilities!