Written Oct 1, 2011
(Warning: I’ve been an internet-ordained minister for 90 days and this is my first sermon)
I already sense that there is sometimes a goofy and unnecessary divide between families with kids with disabilities and people who haven’t had that experience, and it risks isolating people.
A friend mentioned that he thought long and hard before sending me an email about Down syndrome families. He didn’t want to offend me. That made me sad.
Because I really appreciated him thinking of us, and I didn’t understand why he suddenly cared about offending me.
It’s as if the stakes are higher now than a year ago. Like now some people might worry about saying the wrong thing or offending us. I understand, but it’s a drag and a little silly. But we’re pretty tough to offend. And besides, we’ve probably already said aloud (and certainly thought) all of the dumb, inappropriate things that people are thinking.
I feel like Rodney King (or was that Larry King) saying ‘Can’t we all just get along?’
I’ll admit that I’m often uncomfortable with people with disabilities, and I need to get better. And I hope that people can take a risk and just talk to people with disabilities and their families. Some of them have been through a ton, but they’re still people. And to me, having spoken to many such families recently, they are some of the most grounded, tough, optimistic, joyful people I have ever met, and I’ve only been in this business for 182 days.
(Ironically, I edited my preachy rant a lot to make sure I didn’t say the wrong thing. Hmmmmm.) Anyway, it doesn’t have to separate us. I hope that people will not be afraid to approach us. So many people have graciously embraced us during this time, and this will be a lifelong situation. Don’t worry — you don’t need to continue bringing us chili for dinner on Tuesdays and Thursdays. Just keep treating us like you did in 2010, and don’t be afraid to make fun of us.
Jean Vanier describes the discomfort many of us feel. He says that every one of us has real challenges and vulnerabilities, but we’re good at hiding them and not showing our weaknesses. But many people with disabilities just put it all out there and let everyone see their neediness. And seeing that reminds us of our own vulnerabilities, and that makes us uncomfortable.
But Vanier closes by saying that it’s all of us bringing our own weaknesses and interdependencies together that knits us together as a community.
I like that.
Let’s face it — this is not life or death, and we’re not feeling sorry for ourselves. I just see goofy things as I straddle the disability community and the larger community. (Okay, I’m done preaching. You can start reading again.)
On a sidenote, for a house with a newborn and two teenage girls, ours is actually quieter and calmer than usual. Our girls probably think that Laura and I are becoming better parents, more patient and gaining perspective through this experience.
But the fact is that we just don’t have the energy to argue with them right now.
But soon we’ll catch up on our sleep and will once again be ready to yell at our kids and get back to being a loud house. I can’t wait.
Quiet, preachy and grateful,