Maybe I've got the heart of Scrooge and the soul of the Grinch, but I'm not a great lover of inspirational stories of faux achievement. Maybe my real disability is cynicism because I get a sense of collusion and cruelty rather than love and support. What am I talking about?
Let me explain.
I get a lot of emails regarding various stories about disability from newspapers and magazines. Many send me YouTube videos of an inspirational nature. I do appreciate getting these, I feel the gentle nudge to write about the story on the blog even if the person doesn't specifically ask. Sometimes the story is about something I hadn't heard of and something I want to write about. Sometimes it's not. But in either case I'm glad to know.
Over the last few days I've had several people send me a story about a young man with Down Syndrome. He apparently scored a touchdown at a high school game. As I understand the story, the touchdown was made possible because the 'regular' players of both teams set it up and allowed the goal to be made. The story as told seems to be about how wonderful it was for this young fellow to get the experience of scoring a touchdown and being cheered by the crowd. There is much talk about his self esteem.
But to me, the story isn't about him at all. His Down Syndrome is an accessory to the story of wonderful young sportsmen who 'gifted' him with a moment that 'he will remember' all his life. There is a lot of talk about how wonderful these sportsmen were, how generous and kind and thoughtful their action was. And maybe these all are terrific kids. And maybe there's something wrong with me. You see, I don't get it and I don't like it.
Self esteem needs to be based on what is real not what is pretended, on the truth of who you are and the truth of what you have not on the lies that others tell of you. I don't know who the kid with Down Syndrome is, and I'm avoiding this story purposefully, but I'm guessing he's got lots of 'goods' if he has so many people wanting to do him 'good'. I'm guessing he has lots of real attributes to be proud of, so many that he doesn't need a fake accomplishment gifted by a fake moment. I'm guessing that he's got enough personal 'sugar' such that he doesn't need a life sweetened by Splenda.
These stories seem to imply that people with Down Syndrome only have accomplishments that are manufactured by others and gifted by kindness. These accomplishments make the 'story' of Down Syndrome one of tragedy overcome by generosity. There is a hint, in all this, of cruelty, somehow. As if in cheering him they are kind of laughing at him and his innocent belief that he actually scored a touchdown, in a real game, in a real play. I sense hurt coming, big hurt. Hurt that comes from being tricked. Hurt that comes from being purposefully deceived. Hurt that could have been avoided. Hurt that does real damage. I see the brakes failing on his faith and imagine him hitting the wall of reality at 100 ks an hour. I hope he survives.
And yet what truly saddens me is that the 'real' story of Down Syndrome and people with Down Syndrome is much more dramatic. The 'real' story doesn't need dressing up in costume and playing pretend.
The real story is about kids with Down Syndrome finally being given the dignity of education, learning.
The real story is about kids with Down Syndrome finally being given the dignity of community, working.
The real story is about kids with Down Syndrome finally being given the dignity of relationships, loving.
The real story is about kids with Down Syndrome finally being given the dignity of worship, praying.
The real story is inspiring. But the real story is tough. To tell the real story you have to begin, not with a bunch of wonderful, generous, kind, saintly kids, but with a society that disallowed education, community, relationships, worship. To tell the real story you have to begin, not with a kid making a touchdown, but with the kid setting foot in school at all ... you have to tell of the battle of parents, of self advocate groups, of a movement to include kids with disabilities in their neighbourhood schools. Doubtless there were teachers and administrators there that day that one day fought against the inclusion of kids with Down Syndrome in the school district. The real story is inspiring. The real story is victorious. The real story is about parental love, about personal courage, about the will and the determination of a people to go to school, to live in the community, to be part of the social world.
A kid with Down Syndrome makes a touchdown that isn't real and the world cheers them. Yet many people with Down Syndrome have scored 'life' touchdowns and people don't know who they are: Gretchen Josephson, Raymond Hu, Edward Barbanell, Sujeet Desai, Jacob Halpin. Many people with Down Syndrome have scored 'dream' touchdowns having gotten jobs, having moved into Independence, having gotten behind the wheel of a car, having married the love of their lives. But these stories are about personal victories by people with disabilities, not of victories as the result of the charity of warm hearted normals. These stories ask to change perception of disability rather than wallow in the superiority of normalcy. Not such a movie moment hmm?
We were going to the grocery store, Ruby was bubbling with energy. A young woman with Down Syndrome was on her way to work in the store as was evidenced by the uniform she was wearing. Ruby was asking me to race her but it was uphill. The woman with Down Syndrome said to me, as Ruby's obvious care provider at the moment. 'If you like I'll race with her up to the door.' Ruby yelled, 'Yes!' before I could. I simply nodded, glad that Ruby would have a distraction. The two of them raced towards the door. Both laughing. I saw that the woman checked her step and allowed Ruby to get there first. Ruby got to the door and screamed, 'I won!' The woman with Down Syndrome waited with her for a moment as we caught up.
I thanked her and Ruby said, 'I think you let me go first.' The woman blushed and said, 'I was just giving you practice for the day that you don't need help to win races.' Ruby giggled and the woman waved.
No cameras. No crowd. But ... TOUCHDOWN.