Being human

We tend to see people with disabilities as individuals with moving and inspiring stories. Strong willed, facing the outside world that often fails to understand and care. This is such a simplistic view- as always there's so much more to a person and reducing them only to their fight and plight isn't really helpful in spreading awareness and bringing understanding. People are more than ideas they front, causes they stand behind and obstacles thy face. Few days ago, I wrote an innocent and yet frank observation about my orthopedic shoes and yet it caused quite a stir. How dare I demand that the clothing and rehabilitation tools be not only practical, but also attractive. Why would I concern myself with such petty things as external attractiveness rather than inner beauty? How about because what we tend to forget is that I am human. Back then I was just a  kid. Even today I feel better when I dress nice, if I'm happy with my haircut or try something new with my facial hair. You'd think I have bigger problems to deal with, but there are moments when I can't let go of that bald spot on the top of my head and I try formulas and capsules to make it less visible. I'll admit it- I like being surrounded by things that are pleasing to the eye and I also like when people find me attractive as well. Because we all live in a physical world, not the world of ideas and the amount of trials, tribulations and pain doesn't change the fact that people stare you down and judge you from the moment you go get mail in the morning or go to the store to get milk. That's not to say I do it only for other people, I do it for myself as well. But yes, I'd rather people think "Wow, he looks sharp today" than "Oh, he's so brave". Like everyone else I have insecurities and wants and needs. Small things often lift my spirits.  Few years ago I used to dye my hair blond. My parents didn't like it- although they've only seen the pictures, but that really didn't matter. Something was happening to me as I was sitting under that cap and all the troubles seemed melting away. Remember my impressions after seeing the film "The Sessions"? The image of a paralyzed, polio suffering writter as a sexual being mad a lot of people uncomfortable. It seemed the less physically able he was the less he was allowed in public view to be aware of his physicality and have physical needs.If it was about him fighting for a ramp, social security benefits or fighting to publish a book against odds the movie would've met every audience's applause.

I remember visiting my cousin in Las Vegas when I was 19 and noticing that my twelve year old nephew had more jars of hair gel than I. That is probably the age when you start to pay attention to your physical attractiveness more- you want to stand out, be an individual, get noticed but also blend in. It was easier at The Peto Institute. We all wore the same style "uniforms"- t-shirts and shorts they provided. It was easier when I was seven, eight, nine or ten. It was easier, because it's easier to focus on things that should matter more when you're far away from the outside world at a closed institution. I've never thought about it that way before I've seen a few episodes of the HBO original series- "Enlightened". The heroine played by Laura Dern, a corporate rat suffers a mental breakdown and is sent away to a holistic inner peace program far away from the civilization. What becomes challenging is applying those lessons and skills to the unforgiving rush of modern life. When she again has to deal with people, deadlines and traffic. It was simpler when she could focus on the beauty of sea turtles and clarity of blue water. In a way I feel like that about my time at the Peto Institute. But there's more. I realized that for me and most of my friends are time there ended right before puberty. We were ten, eleven, twelve. The age that we not only pay more attention to our own appearance, but also start notice other- in the romantic sense. The time of first crushes. And that is also the age you start feeling more and more different. The disability becomes more and more noticeable. When it can't be buried or mitigated by the social skills of an observant caretaker or parent. It's easier when you're 10 to not think about the future, to not concern yourself with how others see you. I can't stop thinking, that perhaps the Institute could have given me something more going forward, a boost of confidence for my teen years. When I was nine and I played with able-bodied friends, the moment I got excluded somebody stepped in and steered the game in a new direction to bring me back in.  It's easy to deal with ten year olds. But adult life is different. If we could only be ten all our lives. At that age looking good and dressing nice had another layer. I grew up in Poland, where a pair of jeans, new sneakers were rare and highly desired. It was something that lifted you from the obscurity that the communist reality around us was, sad and gray. It was not simply an instance of going to the store.