08/29/2024
Just one day into the Paris Paralympics, this post showing up in my feed this morning feels like it was meant to be. This message is important.
A few years ago, I wrote, "If people become better human beings by spending time with my daughter, hey, more power to ‘em, but let me be clear ... It is not her job, nor her purpose in life, to make non-disabled people better humans. The idea that she was put on this earth for the benefit of others is just a whole lot of No.”
I sarcastically ended it with “Thanks for coming to my TED Talk.”
More recently, I shared a post from 2015 in which I talked about how, for years, I lamented the moments in which Brooke, in the language I’d have used then, “disconnected.” I wrote about how I felt rejected when she wandered off or seemingly disengaged, and how off base I now know that I was to have felt that way.
I added the commentary, "It wasn’t about me. I was doing that thing that my fellow nautistic* parents and I so often do … centering myself in a story in which I wasn’t even a minor character.”
Those two posts, though seemingly very different, were closely related, and they are, once again, relevant.
I say this next part just as I did then: gently, respectfully, and with the full understanding and acknowledgment that it’s 100% unintentional, because I did it too. And because sometimes, when I don’t realize that I’ve dropped my guard, I still do.
Declaring that our disabled children were sent here to teach us any manner of life lessons is centering ourselves in our children’s stories when they, like every other human being on the planet, deserve to be their own protagonists.
I ask you to imagine with me how it would feel if, as children, we heard our mom or dad or favorite teacher telling a friend or a colleague (or 350,000 people on the Internet) that our raison d’être - literally the entire reason for our existence - was to make *them* a better person.
That we were literally put on this earth to show them the error of their ways - to make them less selfish or more grateful, to make other students more understanding, more accepting. That OUR entire purpose, our entire lives, have nothing to do with US at all.
There is no doubt in my mind that Brooke makes me a better person. Both of my daughters do, and I hope I do the same for them. Heck, if we’re doing this right, then we’re all striving to be better together, right?
But the main characters in my daughters’ stories - both of them - are THEM. I’m just lucky as hell to have a front row seat.
*Nautistic is Brooke’s word for allistic, also meaning non-autistic. It is pronounced NOT-tistic.
{image is a photo of Katie and Brooke on Sconset Beach in 2012 when they were 11 and 9. Katie has her arm around Brooke and is kissing her on the forehead. I’m not sure what, if anything, it has to do with this post, but it also came up in my Memories this morning and I love it so I’m using this as an excuse to repost it. 😁}
