No More Hiding, No More Pretending

by Katrina Gossett

Look!

That’s a word I’m used to hearing from young voices. True to form, a boy was staring at me in the Wal-Mart parking lot as the word was spoken.

But this time, my nephew Carter was the one saying it, while trying to show the staring boy a giant dinosaur balloon. Carter believed the balloon was much more interesting than his Aunt Katrina. He couldn’t understand why the little boy was looking at me while there was a much cooler balloon nearby.

This moment finally solidified for me the ridiculousness of any concept of absolute “normality.”

Growing up, I always assumed there was something inherently different and “abnormal” about me. This wasn’t a tragedy, just a fact. My “abnormality” wasn’t without perks. Because of my wheelchair, I was allowed to sit up close at concerts and cut in lines. I accepted that good and bad things happened because I was different, and this would never change.

My world view took a spin in that parking lot with the dinosaur balloon.

That day, I realized something I’d always unconsciously known: I wasn’t that different.

When I understood that in my nephew’s eyes I was as normal as anyone else, I celebrated. Carter, only 4 at the time, helped me understand that my definition of disability, which had been shaping my life, was based on society’s inaccurate beliefs.

False Pretenses

Carter and Hunter with Aunt Katrina and service dog Duke III.

When Carter was younger, I often tried to hide my disability from him. When he asked, “Why don’t you get up out of that thing?” I’d jokingly say, “Because I have a seatbelt on, silly!”

If he asked me to play something, I’d figure out a way to make it work. A few years ago, I wrote a poem about my false pretenses with my nephew called “Play.”

I realize now that my “charade” was much more for my benefit than his. I didn’t understand at the time that he could see me as “normal,” even with my physical limitations.

I soon learned that my game of pretend couldn’t continue.  One day, he wanted me to follow him, so he grabbed my driving hand and began to walk away with it.

He didn’t comprehend that I couldn’t follow without my hand on the joystick. I nearly dislocated my shoulder in this fiasco. That’s when I realized that Carter needed to understand my limitations for the safety of both of us.

I’m now his favorite aunt for watching him do things. He still asks me to participate sometimes, and I oblige to the best of my ability, with less pretense than before. However, at 6, his favorite request now is, “Come watch me play!” And nothing gives me more pleasure.

Societal Ideals vs. Identity

The birth of Carter’s younger brother, Hunter, made me reflect even more on my disability. When Hunter was a week old, we thought he might also have spinal muscular atrophy (SMA). When this possibility arose, I considered my own life and the value it held for me, in order to better help Hunter with his challenges. I realized that I would never wish my condition on someone else, but I also might not wish it away from myself.

My disability has affected my personality, my preferences and my choices in life. I don’t know who I’d be if I’d been born without SMA. I might not even like that person.

Realizing that disability played a major part in the way I feel about myself allowed me to view it more positively. With this newfound excitement, I became enthusiastic about helping Hunter feel the same way about himself, if he received an SMA diagnosis.

In the end, he was simply a little weak at birth and gradually became the robust toddler he is today. He doesn’t have SMA. Regardless, the experience left me with a very positive understanding of my disability.

I know my understanding doesn’t match society’s ideals. Not long ago, Carter and I experienced these standards when we had a family portrait taken. The photographer pulled out a piece of cloth that matched the backdrop and placed it over the back of my wheelchair.

She assumed my wheelchair should be hidden from view. Photographs are supposed to show families in their ideal state. For society, this means hiding one’s disability as much as possible.

I was younger and less confident at the time, so I allowed her to cover it up. However, whenever I see that photo without my wheelchair behind me, it always looks a little strange. This is not the “me” I see in the mirror; it’s the “ideal” version of me in someone else’s eyes.

I worry that this assumption about what is ideal will have a subconscious effect on my nephews.

The next time I get my photograph taken, I’ll reject the suggestion to hide a part of my identity.
I hope Carter and Hunter will see in action the valuable lesson they taught me: Disability isn’t shameful, “abnormal” doesn’t exist and every life is equally valuable.

My nephews’ greatest gift is their unconditional acceptance of me and my disability. This has given me the confidence to embrace my identity, SMA and all, and to share that confidence with others. I hope their beliefs can one day change our society’s view, but until then I look forward to many more life lessons from my two favorite boys. q

Katrina Gossett, 21, of Indianapolis, is a student at the University of Chicago Law School and plans to study disability law. She can be contacted at kgossett@alumni.nd.edu.