Through the years and the stares and looks, there's without a doubt always one brave little soul who will ask "what is wrong with him". I say little, because it's almost always a small child asking their parents from across the street, in a store, or walking around the mall. A part of me cringes inside and my brain kicks into over-drive. I wonder how the parent would respond to their child, as I see and hear the parent try to pretend my son isn't there and walk away as fast as they can out of embarrassment.
Part of me gets angry that the parent taught their child that anyone who looks different than them is somehow "wrong" and "not normal" --that they have not taught their child that each human being is a beautiful gift to this world. Another part of me feels it is my duty to educate and help spread acceptance of those who are "different".
One particular occasion I can remember vividly was when both my children were small. Sarah was probably around 4 or 5 and Joseph 6 or 7. The three of us were inside a local mall doing some shopping when I had to stop and feed Joseph his lunch. Joseph had a G-tube at the time, which is a tube that is inserted by a quick surgical procedure through the surface of his skin, through the wall of his abdomen, and into his stomach. This tube has ports that allow us to hook a tube or a syringe directly to it so we can feed Joseph his formula, as he is unable to eat from a spoon or drink from a cup or bottle.
I sat down on a bench and put my backpack with all of Joseph's feeding supplies next to me, and had Sarah sit down beside that so I could keep an eye on her when I fed her brother. The bench we were sitting on backed up to another bench facing the opposite direction. A little boy was sitting there with his mother and started peeking over the bench to watch what I was doing. At this moment I had a series of internal discussions with myself as mentioned above. "Do I want to be an educator?" "Do I want to explain to this child what is going on so he doesn't think Joseph is some kind of freak?" "Do I really have enough energy to do this right now?" At that time I decided to be an educator.
I looked at the little boy and said "Would you like to come over and see what I am doing?" as he craned his neck over the bench to look at the syringe and formula I was holding. He looked at me with eyes wide as saucers and glanced at his mother. She said "Go ahead." The little boy came around to the other side of the benches with me and stood beside Joseph. I nodded to Joseph and said "This is Joseph, he eats differently than you and I. He eats directly into his belly. He doesn't have to taste any yucky medicines or foods he doesn't like, they go into his stomach to give him what he needs to grow strong and healthy. Isn't that cool?" At this point I noticed the little boy's mom craning her neck over the bench to see what we were doing as well. She was just as interested and curious as her little boy was about what we were doing. I looked back to the little boy. He said "Woah, that is so neat! So he doesn't have to like, taste broccoli or spinach and that yucky stuff?" "Yep", I said.
And that was it, the little boy's curiosity was satisfied, he walked back to his mom on the other side of the bench, and they went on their merry little way. I like to think that I had a positive impact on that little boy and his mom...that they would forever look at people with disabilities as people who are different-not scary, weird or freaky. I also secretly wished that I made him wish he had a G-tube and didn't have to taste his yucky medicine or food either. ;)
There have been many many times I have been with Joseph in stores and little kids will walk up and say "what's wrong with him?" as their parents turn crimson in embarrassment. I insist that nothing is wrong, that Joseph moves, communicates and looks different-that doesn't mean wrong. I stress that different is okay and to ask questions but not to assume Joseph cannot understand what you are saying.
The lesson here is we can either be stewards of change and acceptance, or we can resist, become bitter and long for that which we will not have. Be an agent of change, of love and acceptance for a diverse world is one of the most beautiful worlds we can imagine.
