Written by Hope Ratcliff, M.Ed.
Hope Ratcliff is a member of the Spina Bifida Associations Advocacy Committee, a UDL Specialist at the University of Southern Mississippi, and an adult with Spina Bifida.
I’ve never shared my SB story for Spina Bifida Awareness Month, because I don’t have an “SB” story. I have a story. Like everyone else. It never occurred to me that mine was specifically a story about Spina Bifida, because it isn’t. It’s a story much the same as anyone else’s, yet unlike any other you’ve likely ever heard before. Just like everyone’s is. Unique yet similar. So why share it? What is “awareness” anyway? I have asked myself this question since I was a little girl. Growing up in my childhood and throughout my teens, I would usually roll my eyes at “Awareness Months”. Breast Cancer Awareness, Childhood Obesity Awareness, Sexual Assault Awareness and on and on and on. My thought was always, “Aren’t they aware already? If you have it, don’t you know it? If you’ve been assaulted, I think you might not want to be reminded, right? So, why the awareness? What is it proving? How does that help anybody?”
I was a different person back then. You see, my story doesn’t revolve around my disability. Not even close. In fact, as a kid and into my teens and even my early 20’s, I rarely ever talked about having Spina Bifida. In fact, talking about it was an anxiety-ridden, trauma-filled scenario any time it came up in conversation with anyone. I had zero disabled friends. I probably couldn’t even tell you my medical history or my diagnosis. In short, I did everything possible within my power NOT to be aware that I had Spina Bifida. I just wanted to be “normal”. To “fit in”. I was taught to be tough, smart, smile, be grateful and never let them see you cry. Persevere, overcome, have patience, stay the course, adapt, adapt, adapt, but NEVER GIVE UP. So that’s what I did. And it worked… for a while. But, in the words of the great Brene Brown, “Do you wanna know what the opposite of belonging is?” “Fitting in”. So, slowly but surely my sheltered, pretty, little closed-off, unaware world started to crumble around me.
I had worked so hard to be what everyone thought I should be, that I had no clue who I was. I fought so hard to be a part of a society that continually taught me I was less than that I had no idea what I was worth or what I deserved. I had been told so many times that I was “special” and “inspiring” yet treated like I was nothing. Trained to beg for bread crumbs rather than to bake my own bread. That juxtaposition woke me from the sleep I had been in for the whole of my youth. I started to wonder why it was always my job to endure. My job to adapt. My job to overcome systemic barriers constantly in my way. Why aren’t other people doing anything about this? Why am I the only one that needs to be aware? I know I have Spina Bifida! I live with it every day. What about everyone else? Shouldn’t they be made aware of the obstacles that I deal with just to “fit in”? “Isn’t it time I belong?”
My mission was born. I stopped using my life to try and “fit in” and started to recognize my unique views and realize my worth just as I am. Belonging isn’t about joining a group, it’s about bringing your personal worth to the table and contributing to the group what you have to offer. Then leaving it all on the table and letting the group decide. Walking away, if necessary, with your dignity and head held high. I don’t belong to every group and that is ok. I find my place by bringing my uniqueness to the table. My hope is that people will want to hear what I have to say. Want to know who I am. If not, that’s ok too. That is the chance we all take. Awareness, for me, works much the same way. It’s not about me trying to convince people that I have SB, or that I struggle with SB or that I thrive with SB. That is all true. That is just my story. It is up to others to decide whether or not they care and what they’re going to do about it.