My Journey to Disability Pride: I Wasn’t Always so Proud
by Ben
My Disability Pride month story starts with the truth – I wasn’t always so proud.
15 years ago, lying in a hospital bed in Atlanta, I was insecure and depressed. I was paralyzed.
At first, I didn’t want to live – it all just seemed too hard to handle. Life wouldn’t be the same and wouldn’t be worth living. A few weeks passed, and I was halfway convinced I was living in a bad dream. Surely, I would soon wake up to my old life, where I could walk, throw a baseball, and wax my truck.
After a few months, the reality of my injury slowly set in, and I started to accept what had happened. In doing so, I regained a bit of my humor, but lacked confidence.
As I tried to cope with my new normal as a quadriplegic, I was incredibly lucky to have a unique security blanket in the nurses and therapists at the Shepherd Center. Shepherd, a traumatic brain injury and spinal cord injury hospital, was an excellent place for me and my family to learn our new normal. It was at Shepherd where I got my first wheelchair, learned voice recognition, and started my first therapies.
Shepherd was full of people who understood spinal cord injury. As I rolled around the hallways halfway dressed, a halo attached to my head, and a ventilator tube attached to my neck, no one looked at me differently. We were all normal. We were all there to support each other. It was home.
After four months at Shepherd, I returned home to Evansville, but I felt very vulnerable. No longer were we surrounded by nurses who always knew what to do. We were “out in the wild” of the world, where most people didn’t know a thing about spinal cord injury. It scared the hell out of me.
I can distinctly remember my first trip to the movie theater in Evansville. My friends were ecstatic to check out the newly released “Superman,” who coincidentally – with the influence of Christopher Reeve, a fellow quadriplegic – had quickly become my new “superhero icon.”
We loaded up in my big, clunky blue van, and made our way to Showplace Cinemas. That first van we owned was awful. It was way too big, it rode terribly rough, and worst of all, IT WAS A VAN. As a young man who prided himself on his bad ass trucks, I was now stuck in a blue Ford van! Depressing.
As we parked at the theater, I felt a tingle of excitement to check out a new film, and bond with my friends. But, I was nervous as to how people in the movie theater would react to the sounds of my ventilator (much like a loud Darth Vader breathing) during the quiet parts of the movie. Would that bother people? Would I be an inconvenience? I told myself all would be okay.
“Errrgg……” the bulky ramp folded out from the side of the ugly blue Ford van. It was time to get out.
I rolled out on the pavement in front of the theater, and it was in that moment I was struck by a sight I’ll never forget – a school bus full of kids staring straight at me, watching my every move. Panic.
I knew those young kids were judging me. This wasn’t the experience of the Shepherd Center, where everyone knew about spinal cord injury. I was outside my element, and I was, quite literally, paralyzed with anxiety. I didn’t want to go see a movie anymore. In that moment, I wanted to go home.
“Just breathe. Look away. Don’t worry about it. Let it go,” I told myself.
Knowing going home wasn’t an option (my friends would have kicked my butt for cowering down to some kids), I tried to act as nothing happened, and we continued to see Superman with most of my initial excitement. The movie was lovely, a trip out with my friends was fun, but those daunting sets of eyeballs – and the following fear of insecurity as a person with disability – was blazed into my memory forever.
Years later, I look back on that moment – a still young, newly injured Ben – and I’m proud of how far I’ve come. In fact, I often share the story of “those damn kids” when I speak to audiences about my journey after spinal cord injury, and the pursuit of confidence, and regaining my sense of humor and purpose.
At that time in my life, I was insecure. I still am to some degree, but I’ve become very proud of who I am.
If those kids were looking at me today, I’d say “hey, what’s up y’all” and wouldn’t think twice about it.
I was once very insecure about my disability. After 15 years, graduating college, working a full-time job, finding my advocacy voice as a National Ambassador for Easterseals, traveling across the country to advocate for accessible airlines, and even running a political campaign and getting elected – I’m damn proud. And yes, that very much includes my disability.
As we celebrate Disability Pride month, it’s more important than ever to discover what makes you proud of who you are, and even more importantly, the journey that got you to where you are today.
My Disability Pride story starts with a simple trip to the movie theater, how about yours?
August 27th, 2022 at 2:04 am
Hey good one