He nodded to me and it was noticed.
Joe and I were leaving Blade Runner and had become 'toilet runners' heading quickly over to the loo. I was pushing hard, the carpet is thick, and as I went into the entrance to the toilets, which had a large entryway, a young man with Down Syndrome came out. He saw me, his face lit up, and he waved.Before I could stop and respond, I heard a voice behind me, say, "Stop it! He's disabled. You are just like everyone else. Don't keep waving to people like that."
I shit you not.
(Which is a weird thing to say given where I was.)
I turned in my chair to see her and said, "people like that?' She wasn't even slightly embarrassed or uncomfortable about what she had said. "My son is completely integrated, I don't want him to live a life of disability." She grabbed his arm, and off they went. In an act of defiance he turned around to look at me, even though we was being propelled onward, and took his free hand and waved goodbye.
In that moment I loved the spirit in that kid. I loved his willingness to defy unfairly set rules. I loved his ability to be warm towards those he's been told have no worth. I admired him.
He has a rough road ahead of him. He is what his parents don't want. He is disabled. He will live a life where disability his disability will matter, both in terms of what it means to how he is in the world, but also because of who he is in the world. He needs a different more from his parents than his mother seems to be thinking. She might write a blog post about her son and how much more time and more effort it takes to raise him and to teach him. But he needs a different more.
He needs to learn about his difference, what it means and what it doesn't. He needs to learn how to live in a world that will exploit him with pretense of kindness and hurt him with the intent to shame him. He needs to learn to find safe harbour. He needs to learn of his own community and to value others who, like him, fight the same fights, have the same agenda for social change, have the vision of a world where the difference of disability is simply another difference amongst many differences. He needs to value his own difference, he needs to see his disability as what it is, just another way to be.
And he needs to learn that a life of disability is just a life of disability. It's possible to live that life, love that live and prosper in that life. People with intellectual disabilities are doing what no one thought possible when people who had limited imagination had control of the goal setting and the dream determination.
But he has courage.
And he has kindness.
And he has the willingness to be non compliant when non compliance is necessary.
I wish him well. I wish his parents well too. I hope that one day they will look at their son and realize that they can be proud of all of him. All. Of. Him.
Me too, Dave, me too.
ReplyDelete"In that moment I loved the spirit in that kid. I loved his willingness to defy unfairly set rules. I loved his ability to be warm towards those he's been told have no worth. I admired him."
And warmth is a big thing which I would feel in every wave; fist bump; hi-5; low-5; slow-5 and all the affection and affirmation which goes around us.
This, too, is part of a life of and with disability.
Ahem.....had to read this post twice to sort out what happened. Mom has an interesting definition of living without disability - if you just pretend no one has a disability then I guess you can hold that world view. How hard for a child to have a parent who completely pretends that the child is 'someone else' and not their own unique self. He does seem to have a strong spirit...the world is a hard place and I hope that he meets more people who see him as he really is....we all want to be seen and loved.
ReplyDeleteclairesmum
What kind of people are "people like that"? People who are kind, loving, brave, strong, funny, articulate, handsome, giving, and so much more? Gotta beware of those sorts, because we ARE changing the world FOR THE BETTER!
ReplyDeleteOMG...I feel physically sick reading this post. I can not even begin to imagine telling my son that his disability was not a loved and accepted part of who he is. I love my son...EVERYTHING he is... and am proud of him, not because of his disability, or in spite of his disability, but just because he is exactly who he is. He is valued, all of him.
ReplyDeleteI hope the mom of this young man learns, one day, that to pretend his disability does not exist is to say that there is a part of him that is not good enough... and she is wrong.
"He needs to learn about his difference, what it means and what it doesn't. He needs to learn how to live in a world that will exploit him with pretense of kindness and hurt him with the intent to shame him. He needs to learn to find safe harbour. He needs to learn of his own community and to value others who, like him, fight the same fights, have the same agenda for social change, have the vision of a world where the difference of disability is simply another difference amongst many differences. He needs to value his own difference, he needs to see his disability as what it is, just another way to be.
ReplyDeleteAnd he needs to learn that a life of disability is just a life of disability."
I agree with all of that save for the word "need." I would insert the word "could" or the phrase "would benefit from" there. The word need is very power over when you used by one person in regards to another. Need cuts off possibility. It judges. It is imperative. Need doesn't explain - it simply states definitively. I worry about "need" and my staff and I have 'need discussions' frequently. (They happen with the word 'should' too.)
In my life as a person in MH / Addiction recovery, I have things I've discovered benefit me greatly in my recovery. They work for me - but they are not needs that everyone in recovery has. I cringe at the word when applied to anyone save for me applying it to myself. (And even then - I don't tend to use the word as it's an imperative that most often doesn't apply. I need to breathe, to eat, to drink water, to sleep, and to perform certain bodily functions. Everything else has more to do with quality of life and are optional.)
I hope this fellow can connect to others so that their collective strength can impact the world in an effective way. I hope he develops a strong sense of personal direction and drive toward empowerment. He could certainly benefit from those things.