Monstrosity or curiosity? That was the question.


Going to school, whether it was elementary, middle, high school or college was one of the MOST amazing, fun-filled times of my life, but it didn’t start out that way. As Deputy Barney Fife told Gomer one day on the Andy Griffith Show, “During our lifetime, we travel many roads…” Seemed like I had a rocky road in elementary and middle school, and I don’t mean the ice cream!!!

Granted, I was just getting used to the chair the first couple years in elementary school, so I had a lot of questions. How do I push a wheelchair? Would I like it? Would I make friends easily? Would other students treat me like an outcast? Would their treatment force me to be hidden away in a special education class, force me to live my life in a strange imaginary bubble, away from society, away from the world I was excited to get out and explore? 

Boy was I shocked to learn the answer to these questions… When I started kindergarten, I used to get stared at a lot, mostly from other students and classmates, and this continued through most of middle school. I’m not ashamed to say I was truly saddened that they thought I was ugly and perhaps thought I was some kind of a monster.

I remember one instance like it was yesterday. I was coming back from the gym one day in elementary school and noticed a girl beside the ice cream freezer staring a hole right through my head. (We got ice cream a couple times a week after lunch if we were good :)) I thought about that girl the rest of the week, and the weekend, and finally decided to tell my teachers and parents what happened. I’m not sure what became of the situation, but as I got older and started to put myself in other students’ positions, throughout the rest of my education, I changed MY attitude toward the other students.

Now you’re probably asking yourself, “Why change your attitude? THEY’RE the ones that need to change.” Well, I got to thinking one day… “Jason, you know the students and other kids that look at you may not think you’re that ugly at all. Maybe, just maybe, they’re curious about the chair and why you move around on wheels.”

I vowed to myself, probably during high school (things were a little crazy back then!!!), to tell people about my disability and invite them into “Jason’s World” to ask questions, touch my wheelchair, and pick my brain to better understand how AMAZING life with a disability can be.

Looking back, would I have done things differently, by talking to other students early on, making them feel comfortable right away? Probably, but the answer you’re likely to get from me is ABSOLUTELY NOT!!! It’s hard to explain, but growing up with the stares and (more than likely) remarks behind my back, has probably helped me become a better man and better able to deal with small children when they come up to me in public.

I understand that they’re curious and now I have so much fun talking to children and adults, too, about spina bifida and wheelchairs. I’m out in public two or three times a week, writing stories and taking pictures for my job with the city of Marietta, and it’s amazing how many friends and colleagues I’ve met and formed great working relationships with. But whenever I meet someone new, I alays try to have a smile on my face and introduce myself to put them at ease before we start talking. And little kids are some of my biggest fans now!! Matter of fact, I was at Wendy’s drive-in last week and saw this cute little girl turned around backwards in her chair (her knees were in the chair), smiling at me, eating a salad. I smiled at her and kept waving at her. I think she was shy because she kept looking away when I caught her looking at me, but she was SO CUTE!!!

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13 thoughts on “Monstrosity or curiosity? That was the question.

    • Dear Amy, Thank you so much for the comment. God placed it on my heart to share my story with the world, and I am honored to share my journey with you.

      I’m curious, what do you want me to discuss on my blog? This blog is as much for you as it is for me. I want to form friendships with my readers and really want to answer your questions and concerns. God bless you!!

  1. Dear Jason,
    Your story is a wonderful and unique one. I am honored that you ask me to take this journey with you. I don’t know about spina bifida but I want to know about you and how this condition does and has affected you. Empathy is something I have lots of and the human condition calls on all of us to share with each other in our ups and in our downs. We all will at some point suffer if we live long enough. Thank-you for sharing with us Jason and we are along for the ride. I feel you have only just let us see a tiny little glimpse of the person that you are. Please continue…it’s a beautiful story.
    Gaga

  2. The “COMMENTS” font was too small Jason, (us old people wear progressives) and I missed it the first few times around. I was here already, and read all this. Being as long winded as I am, I will refrain from further comment right now, can come back now that I know where it goes. As I mentioned in my Twitter Messages, I was a bit reserved, about dealing with Wheelchair (WC) bound people. Not sure if I should help them, or not, not sure if it would be proper to ask them what affliction, and like my friend Tanya who passed away this past summer, it was a long time (years) before I even knew she had SB. As we became closer friends, she shared much of the same story, she was thrust into a group home when her parents moved, and isolated from most friends (except me, friends find it hard to get rid of me 😉

    Thanks for blogging about it. I have been following the blogs, now following your Tweets too.

  3. I just wanted you to know that I have started the Journey Jason! I have only read one of your blogs so far, but I am enjoying the journey and will be back! Blessings to you my friend and thank you for taking the time to document and tell your story. You are truly an inspiration!

    :0)s and Hugs!
    Judy Schneider

    • Dear Judy,

      Thank you so much for taking a ride along my spina bifida journey. This blog is truly for everyone who comes along for the ride, more than it is for me. I want people, like yourself, to become an integral part of this blog. I want to have one-on-one discussions with each of my followers, I want to hear from you. What issues are you facing with your family member with spina bifida? What could I write about, that would help you better understand spina bifida and its causes? What would you like to know about my journey with spina bifida? If you could ask me anything in the world, what would you ask me? Personal questions are always welcome. I want to grow in my journey with spina bifida, and talking about personal issues will help me tremendously.

      Hugs :0)S and love to a true inspiration. God bless you, Judy.

  4. I was pleased to see the change in attitude. Anytime you can take the other person’s viewpoint, be responsible for how they see things, or plan how to help make others more comfortable or better, you are far ahead in the game of life.

    Well done. Have a great day,

    Carl

  5. Your journey inspires all of us. The spirit and attitude that the “glass is always half full” is a lesson in walking the talk. Keep your unique and kind spirit and your inquisitiveness to always learn. You are truly an inspiration!

  6. Another amazing post. I think it is important for people to hear things from your point of view, not so they can realize how “different” you are, but so they can see how they are similar to you. I mean, many people feel the torment of being left out, teased, stared at, judged, etc. for many reasons: disability, financial status, race, culture, religious views, sexuality, etc. etc. and they feel alone. But you come around and start telling your story and suddenly all these people can see that they are not alone after all; they have you, and they have each other. (This includes me by the way!)
    In addition to all that, I really like this post (and your blog) because you talked about changing YOUR views and attitude, not the views and attitudes of those around you. That is powerful. We cannot change other people, but by changing ourselves, we can ignite the need for change in others. 🙂
    Bravo my friend!!
    Peace and Love to you,
    Meagan

  7. Sorry for the late comment, but I’m new to your blog and your plight. I’m highly interested, and I like your ‘writing voice’, as it were. I will continue reading, and that’s a fact.

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