Like most moms who have a baby with Ds, I am inundated with stuff about Ds. Lots of it. I know it comes from a place of love and I appreciate that my friends are thinking of me. A lot of it is...sweet. Some of it inspirporn. But none of it hit me like this did. I opened the link not expecting much to be honest. Being who we are sweet articles about marriage or prom queens really isn't making me feel better. But this link? This link changed my world.
With a little research I found Pertti Kurikan Nimipäivät
The drummer has Down syndrome, and all members of the band have intellectual disabilities as well. There's more here and here. Something happened as I watched the intro to the documentary and the video.
There was still a little bit of sadness in me. Mostly I was okay. Down syndrome Uprising along with the Tri21 Brigade has saved me most days. The work I feel I am doing to make a place for Jude's voice is important and it helped to keep that bit of residue sadness at bay. I've meet people who see the world like I do, and that has helped me to parent Jude the way I parent all my kids. When we got the Ds diagnosis, I found myself thinking we'd HAVE to do school, Special Olympics, the Buddy Walk. Honestly it was a little depressing to me because those are not things that are reflective of who we are as a family. But I went along because it seemed like that is what one did when one had a child with an ID. Imagine my surprise and joy when I found people who like to swear! Who like OWS! Who want equality for our kids! Who homeschool/unschool! It was incredibly freeing.
But in the nature of honesty and full disclosure,sometimes when I was looking at Jude, I wondered if she'd ever really have the voice that I was creating a space for. I haven't meet many adults with Ds. The two I meet at a conference were very quiet and their moms kind of ran things. I meet a young man at the pizza place the other day and he was pretty great and out spoken...but still I worried. I worried that if we continued to be who we are, beasties incorporated, that maybe I would be cutting Jude out of something. Denying her a future. Was creating a radical beastie with Down syndrome going to serve her well?
And then I watched this. And the last of my fear went away. There was no more fear about her being with us. The way that we are. When I saw these guys, swearing, drinking beer, dancing with women, being awesome rowdy punk guys, I was thrilled. This looks a lot more like me than the prom queens/kings, than the pretty white weddings (and those are great if that's your thing). But suddenly I knew I had to create a world in which Jude is a punk. Where she can wear her ripped up jeans, sport a mohawk say fuck a lot and drink beer. For me this is what equality looks like. It looks like four guys ripping their pedicurist a new one. It's a world where the punk music that create voice against capitalism can also be a voice against discrimination based on disability.
Because finally...finally Down syndrome looked like me. It looked like us.