I Was a 6-Year Old Freak


On this summer vacation, I was normal. On another one, I was a freak.

I woke up that morning screaming in pain, struggling to move my legs. No doubt, I put quite a fright into my parents who, in the midst of our summer vacation, were confronted with their 6-year old son suddenly being unable to walk. The pain in my thighs was extreme, and in that funny way the mind has, I can still, in a way, feel a dullness now as I recall that scary time over 20 years ago.

To be sure, most of this experience is a blur to me. Only select images remain in my memory: the moment I woke up with the pain (I can still see my bed in the hotel against the wall, which was on my right); having to be lifted off the toilet, useless legs dangling; laying on a table in some strange doctor’s office with my parents on the phone to my pediatrician.

Turns out I was hit with something not uncommon in boys my age called toxic synovitis (or, in more child-friendly terms: growing pains). It only lasted a few days, but something happened during that period that has informed my rationale on a very touchy topic.

Our family planned to visit an amusement park on this vacation, and, I guess the stress of carrying me the whole day would have been too much for either of my parents. Or maybe I would look kind of silly (I was pretty tall) being shlepped around like that. So, I rode in a wheelchair.

To this day, I can still feel the endless pairs of eyes boring into me as I went through the park. It must have been a mixture of pity and curiosity from these people, but I didn’t care what their logic was. I was embarrassed and made to feel like I was less than myself. I was a 6-year old freak.

My mother worked the majority of her career in a school for young adults with disabilities, many of them severe. My parents took us to the Special Olympics in Connecticut one year, and a childhood friend of mine competed annually in Long Island’s Games for the Physically Challenged. For me, a wheelchair or a person with a disability was something I may have been curious about, but I was always told not to stare, AND I knew that people with disabilities were above all, people. (My mother is no doubt crying as she reads this, however I will give it up to my father, too. After all, he was the one who drove us to these places! His presence affirmed the message my mother passionately delivered.)

Unfortunately, the parents of the people at the amusement park must have failed to deliver the same message. Therefore, I, the curiosity, the exception, the thing in the chair, bore their ignorant eyes.

I bring this up because, with the conversation about disabilities that took place in my classroom this week, I was brought back to this low point in my childhood. I decided to let my students into this personal part of my world and shared what it was like for me to be in a wheelchair, and how uncomfortable it felt to be looked at like I was. They were fascinated and inquisitive, as kids often are. And as we had created a list of “Ways We Can Help Someone in a Wheelchair,” including tips like “Be respectful,” I suggested we could add, “Don’t stare.”

Even as I sit here on my high horse, I would be lying if I said, growing up after my own personal experience in a wheelchair, I never stared at a person with a disability. I have, and I’ve been wrong every time. Sometimes you just can’t stifle a child’s curiosity, no matter how socially inappropriate it is. The difference is, my parents used my interest as learning/teaching opportunities.

You’ve read about my friend Greg, who I prejudged pretty wrongly. Whenever Greg and I found ourselves in a public setting, I could feel the eyes following him wherever he went (much more obviously than he could). In fact, it was on a radio road trip to the same state where I rode in a wheelchair that someone made some assumption out loud about him based on his disability that nearly caused me to fly off the handle.

In college, I wasn’t mature enough to say anything to these ignorant, unknowing people other than, “Yeah? Is there a problem?” or “Nothing to see here.” Now, I find myself trying to impart to my students what my parents taught me in their words and actions – people are people.

My story is insignificant compared to the challenges so many people face every single day of their lives trying to be accepted as themselves. At the time, the pain was traumatic, but now I can look back on it and remember it as a hiccup. However, I must still say it was a bit of a life-changer for me. I can not forget the way I felt being treated like a sideshow.

The biggest hurt from riding in that wheelchair was the fact that other children were staring at me. They couldn’t even see me as another child hoping to have a great day at the park – they only saw me as a mass of metal and rubber with glasses, someone they would never choose to play with or invite to their birthday party.

I am grateful for the way I emerged from the whole toxic synovitis/wheelchair scare. First of all, I came out of it in fine health (now I know it was no big deal, but as a 6-year old, you wonder if you will ever walk again). Second, I gained the perspective to know what it’s like to be in a wheelchair with people judging you.

I share this story in the hopes that it inspires you to reconsider your thoughts, or help your students reconsider theirs, about people with disabilities the way it inspired me and my own students. There was a person behind that temporary disability.

There is a person behind every disability.

Submitted as part of Vicky Loras’ blog challenge, “What’s Your Story?”

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10 responses to “I Was a 6-Year Old Freak

  1. Pingback: Blog Challenge – What’s Your Story? « Vicky Loras's Blog

  2. Hi Matt,

    Thanks so much first of all for sharing your experience as a little boy and sharing it on the What’s Your Story? Blog Challenge.

    I am very happy that you came out in perfect health out of this ordeal and all your thoughts following from it, on people with disabilities.

    Thank you so much for taking part!

    Kind regards,
    Vicky

  3. Matthew,
    I remember the terror of your pain and the fright of your not being able to walk. Daddy and I were quite concerned and knowing me, I wasn’t too good at hiding my emotions.Thank goodness your pediatrician was on the ball and quickly allayed our fears. He said this would last for a few days and that you had to stay off your feet. Therefore, the wheelchair. I remember you in the wheelchair and the stares. I also remember the kindness of many people as well.

    As one of your biggest fans, this has to be one of my favorite blogs. It is so clear that through your fear and pain and use of a wheelchair, you learned some very valuable life lessons. As a 6 year old, you learned things that some people never learn in their entire lives. You learned compassion, you learned acceptance and not to judge others by what you see, and in turn you became a better person. This experience helped to shape who you are today. As bubbe always said, “Good comes out of bad,” and it did.

    Daddy and I are so proud of you.

    Love,
    Mama Ray

  4. Thank you for sharing, Matt. It’s always inspiring to read about how less-than-ideal experiences from our pasts have shaped us into better adults. Using that personal experience in class with your students likely improved buy-in to the message you ultimately want them to hear.

  5. It is when we bring the experiences that have shaped us to our teaching, when we let the real world in and bare our vulnerabilities to our students, that we make the most authentic connections.
    Thank you for sharing such a beautiful post!

    • Thank you, Tania. I think this is the first time I ever shared this story with a class. I haven’t forgotten it but I guess it only became relevant for the first time now.

  6. Very well written. I have seen too many examples of the stare, far too many from the eyes of adults who should have know better. A man I came to know quite well would sit in a chair outside a shopping centre selling pens to raise money for people with disabilities. He had cerebral palsy. We would often talk about a number of things and he always knew I would buy yet another pen. His body may have had difficulty but his mind was sharp.

    My mother use to also chat with him when she passed. He would always greet us with a smile. One day my mother returned with a story of what had happened one day.

    About to enter and expecting to see a smiling face, she instead saw two boys about ten teasing the man. When she confronted them, they said their mum said it was okay to tease the spastic.

    What hope have some children when their own parents don’t see what harm lack of empathy can do in the development of a child? As teachers, we can only hope we can influence the children if such positive influence isn’t available elsewhere.

    Ross Mannell (teacher)
    NSW, Australia

    • So here is my question, Ross: Was it the children’s idea to tease the man or was it the mother who volunteered that it might be fun to do so? I don’t think children are by nature malicious unless they’ve learned (or been taught) that malice is okay. And they learn this by seeing it from adults around them who matter.

      • From what I was able to find out, the mother didn’t care what the children did as he was only a “spastic” in her eyes and therefore of no concern. I would suspect the children were modelling behaviour they had seen in the home but don’t have any knowledge of their home life. I agree children aren’t malicious by nature only by experience.
        This dehumanising of a person has long been used to justify actions and has been the source of abominable acts in wars and by oppressive regimes.

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