And I didn't then either.
Not at first.
When I first sat down in my wheelchair, my world didn't change but my experience of it did. Suddenly I was made unwelcome in places I had formerly gone. The hard cold edge of exclusion cuts deep at first. I had to learn to 'place' my anger properly. Learning that my status as 'outcast' comes from being 'cast out' ... that other other's othered me ... that a giant hand took an eraser and changed my vocabulary constantly
And that battle, then, was a poorly understood one. I thought it was about 'stairs', I thought it was about ramps and curb cuts and wide aisles. I thought it was about the physical world that took prejudice and constructed monuments of inaccessibility in worship. This, very young, understanding of accessibility consumed me. I talked about it and wrote about it and thought about it ... I wrote letters, I staged protests, I spoke with managers. Anger, properly placed, is a powerful thing.
But one grows in understanding. As I matured from 'newly disabled' into 'truly disabled' ... I began to get it. I began to see that stairs are no where near as intimidating as stares. I began to understand that I'd much rather fight the former than face the latter. Suddenly there was simply no safe place. Anywhere. My weight, my wheelchair ... my DIFFERENCE ... screamed loudly every where I went. I couldn't ever simply blend in. I even grew grateful for those who had learned to pull their stare, no matter how firmly it stuck to me, away. I could feel glances rip off the skin of my being. I could feel the effort that eyes made to find something, anything, else to look at.
Children are the worst. Parents seem, en masse, to be oblivious to the eyes of their children. Little eyes peer at me, gawk at me. Little fingers point at me. Little hands pull at mother's dresses and father's pants, trying to get their attention, to get older eyes to see what younger eyes have discovered - huge difference. I hesitate to say here, but there are times, when I see a group of children, I head in a different direction. Sometimes I hide away. Waiting for them to be gone. They can, like a swarm of locusts, devour my self esteem in moments.
So yesterday, I rolled into the room where the dancers gathered before the big show. The Propeller Dance company's children's show was to start in a little less than ninety minutes. The older class and the younger class were together in the room. Make up was being applied to the dancers, kids were gathered together in the excitement of the moment. Suddenly, I realized that I was surrounded by children. I felt that fear creep up my spine, I readied myself for the assault, and ...
Not one kid even looked.
A room without stairs, a room with stares ... a safe place.
I have few safe places.
These kids were so used to different that different wasn't different any more. Difference wasn't welcomed. Difference wasn't tolerated. Difference simply wasn't noticed. I found myself engaged in what was happening. Rolling over and by a group of kids to see Ruby get her make up put on. Rolling back by a different set of kids to chat with Marissa about the chaos around us.
Was I hurt.
I've heard all the various reasons why inclusion matters and why inclusion should be encouraged. I even heard a presentation many years ago, when segregated schools for kids with disabilities were the norm, where the presenter listed 115 reasons why inclusion (although it was called 'integration' then) benefited children.
I hereby add one more reason to that list.
It creates a world of gentleness and safety.
And, forgive me for saying this, but we could use more of both.
During the show, I did what I was supposed to do. I got all teary watching Ruby do her dance. I got all mushy inside watching all the children work together to create art. I noticed and appreciated both the art and the message. I did. I really did.
But what I did mostly was allow those children, those magical children, to hold me safely and gently in their tiny hands and their huge hearts.
"...and I think to myself:what a wonderful world!"
When I feel very dofferent after a hard day at work I visit my aunt who is a daycare mother for children at the age of half a year to three years. They dont knowbto stare and judge me different. I feel welcomed there. It is good to have such safe places. And yes there should be more of them.
I'm not sure the blame lies with the children. If there is "blame" it lies with the parents. If the children have not been exposed to differences then they, without thinking it is wrong, will stare and notice. They may "demand" explaination - and could even be scared. Be assured that their actions are not done with malice - but with curiosity. It is healthy - but such curiosity, like some of the issues in recent posts, should be dealt with before the situation arises.
Imagine if parents took the time to integrate and include right from the cradle. The results would be children like those in Ruby's dance class. Oblivious to any "difference" because there is none.
I can only encourage you to embrace the honesty of children (although it can be brutal at times)and perhaps offer the parent and opportunity for the child to ask questions. That way you both can loose a little fear :-).
Yes, yes, yes! When people are accustomed to diversity they no longer notice it. Children don't have to be told not to stare, because they don't see something new that rocks their world. They see people.
As a parent who fights for inclusion and pushes for inclusion from birth this is EXACTLY why I do it.
This is the world I want to be part of, this is the life I want my child, Mac, to live.
I welcome the stares because, if given a chance to ask a question, we will share, demystify, educate, empower and eventually alleviate the stares you endure.
Today, with joy in my heart I watched my son get pushed down a (retrospectively) 'far too steep' grassy knoll ;-) by a kid his age (who got his kid sister to get in front of the wheelchair just incase they lost control LOL) and the other kids kept an eye out to make sure they were all OK and another parent assisted at the end before they came a 'cropper'.
That's why I do it. Because those kids don't care he's in a chair or can't talk, or dribbles a bit, or needs 'smooshed food', they will include - even if it is a bit risky to life and limb. Earlier in the day other friends learnt how to use his yes/no foot switches with him to be involved in the 20 questions game they were all playing.
I am often scorned by other parents who prefer a segregated path... who see me as an 'inclusionist' - the "ist" is meant to denigrate my choices because I threaten their own choices - but I don't care.
I can see the path to an ordinary life for my child, for a better world for you and him, hell, for all of us... so I fight, whatever it takes. Sometimes the path will be tougher for Mac - but the prize will be immeasurable!
I think Naomi has hit the nail on the head - "when people are accustomed to diversity" - but we are not. We live in a segregated and prejudiced society with a very low tolerance for diversity.
The dance class that Ruby participates in sounds fabulous! I wish there was something like that here.
I value the insight your blog offers.
I too get the stares. I really don't mind the stares of kids, they often do it with an innocence. A lot of times it can open up an opportunity for conversation, how I react to it could dictate how they in turn react to people with disabilities in the future. I will never make a kid feel bad for asking an honest question and I have often initiated the conversation if I see they are shy to.
I find old (elderly) people most often the worst, they know what they are doing yet do nothing to stop themselves. They don't want to know, they often just sit in judgement.
I've often wanted to ask them (in my head of course) if they'd like to take a picture, it'd last longer.
(I'll have to make a real account someday)
That`s absolutely beautiful Dave. Thanks for posting.
We stare. My youngest has down syndrome and we make a point if teaching my older son that everyone is different and it is okay. We look at people with wheel chairs, afo's, walkers, canes, feeding tubes,etc. I try to show him and explain they do everything we do in a different way.
My son is tube fed also. Most times we feed him in full public display hoping to educate someone or make someone else feel okay with their difference. He used to also be on oxygen most people that would approach us were "been there done it parents or grandparents".
My real point is staring isn't always meant in a bad way. Recognizing difference doesn't mean we don't accept different.
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