By Julie Marie Jones
I was a scrawny, insecure 14-year-old freshman who wanted to be anywhere but on a stage. A lifetime of being gawked at by strangers due to my disability had turned me inward and untrusting, so the idea of intentionally putting myself on display – for a high school letter grade, no less – made me want to puke. It came down to a choice between sucking it up in front of strangers or going to the special ed teachers and admitting that I couldn’t cut it as a fully integrated/mainstreamed student.
Sometimes choosing that which scares us the most strengthens us the most.
I’m sure my tiny voice squeaked as I sat there on stage and introduced myself, eyes downcast and thinking of nothing but exiting stage left and continuing until I was off campus. Until that point in my educational career, I was accustomed to having my words and ideas ridiculed once they left my mouth. Kids are cruel, as the saying goes, and I’d learned that silence was a good weapon against their taunting.
Much to my surprise, my self-introduction that day was met by thirty teenagers leaning forward in their seats, smiling with rapt attention. It didn’t take me long to smile back, and before I knew it my “trial by fire” introduction was over. I’d not only survived the experience, but I found myself accepted as one of the gang. I didn’t realize until much later that this particular bunch of teenagers knew exactly what it felt like to be ridiculed and bullied. These were the oddball misfits of the school – the kids who weren’t good at sports but still needed an outlet for their abundant energies and frustrations. I fit right in.
The life of a teenager is riddled with feelings of isolation, but finding your “tribe” can make all the difference in how you handle other peer situations. I was still ridiculed in a few of my other classes, but I drew heavily on the strength given to me by the group in which I was accepted and embraced for who I am, quirks and all. For the first time in my life, my disability became an asset, not a hindrance – a strength, not a weakness. The only thing I really miss about high school is getting to hang out with that wacky bunch every day.
Old friends come to the rescue
Fast-forward through a couple of decades… Many of us managed to stay in touch, which is a small miracle considering the fact that we went to high school in the dark ages before cell phones, email, and social media were available. When Facebook finally became a thing the format made it a lot easier to keep everyone together and informed about the ups and downs in our respective lives. I’m not the only one who has needed a boost of strength over the years, but I am the latest member of the group to need help.
On October 3rd, while coming home from a routine doctor’s appointment, the transmission on my 25-year-old van blew while we were on a congested Southern California street. I saw the smoke billowing from the engine while my mom – who was driving – struggled to pull the car to safety. It was about 100 degrees that day, and it was a complete nightmare trying to find appropriate transportation to get me and my 450 pound wheelchair home. You would think that somewhere in my sizable hometown you would be able to hire a wheelchair accessible taxicab, right? Wrong! We were hours on the phone with the Triple A dispatcher while she desperately tried to find us a ride. My mom and I were within seconds of starting the long walk home when the dispatcher called back with a “medical transport” that came and rescued us – finally!
My van is toast. It will cost more to repair the transmission and breaks and sundry other problems than the 25-year-old van is worth. In the meantime, I can’t get to my medical appointments, much less anywhere else within my community.
Once again, that same wacky bunch of oddball misfits leaned forward and said, “Julie needs help. Let’s get this done!” We’re scattered all over the country – and even all over the world – nowadays, and yet every one of them paused their busy lives to lift me up and say, “we’ve got you; don’t worry.”
We all like to believe we don’t need to rely on others, but I think one of the greatest gifts of my disability is the recognition that I can’t do it all alone. I often fear asking for help because it might make me appear weak or incapable. The thoughts that keep me awake at night are visions of society treating me like a “charity case,” which gives everyone the excuse to treat me as less than equal – to ignore or even ridicule my words and ideas. Friends who know me, though, never treat me as less than anything, and they make it normal to lean on them in times of trouble.
Sometimes our greatest strength lies in the gift of our friends.
My beautiful, wacky “tribe” has set up an IndieGoGo fundraising page to raise the much-needed funds to replace my wheelchair accessible van. They’re doing this NOT out of some misguided sense of pity for me because of my disability, but rather out of the bonds of life-long friendship. Every donation – large or small – to www.WheelsForJulie.com honors the strength of friendships that began so many years ago.
Julie is a novelist living in sunny Southern California with her parents and her beloved but spoiled rescue dog, Roxy, who likes to bark and mess up the speech recognition technology that Julie uses to type. Julie has Spinal Muscular Atrophy (SMA), type I/II.