Sunday, April 28, 2013

Jude Is a Punk

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.

15 comments:

Rachel Douglas said...

But of course you know she will do just the opposite, to fuck with you...:)

Crystal Rhew Staley said...

I'm with you on this! I get overloaded with the inspirational stuff. I know it's coming from a good place, but it gets to be too much sometimes.

Horacio said...

<3 ing the last posts here!!

Ginger Stickney said...

LOL Rachel so true. But that makes me happy to.

And yes Crystal..the overload can be a lot.

Thanks H:)

Notatypicalmom said...

I love this!

TT Lynn said...

Ginger this is amazing, thank you for posting. I love that Jude is Punk Rock. It totally made my day. :)

Anna said...

THANK YOU! THANK YOU for showing us this video! I was watching some of the documentary. As much as I like (sometimes) to see all the happy, feel good stories, seeing these guys being who they are supposed to be...just ordinary dudes, doing what they love and being....human, not "special", not angels.....refreshing!!

Janet said...

Ginger: you don't know me, but you might be pleased to hear that my 21-year old son (w/Ds) has the most extensive mp3 collection of anyone I know, loves punk (but is currently into thrash metal), rocks Elvis Costello glasses, drinks beer, speaks a little French, and just graduated from a two year high-school-to-college program at Penn State. Welcome to the future!

Extranjera said...

For a person who's never been able to fully see the point in that whole 'more flies with honey' stuff, especially when it comes to something that really should not be up for discussion the first place - a person's basic humanity - ever since this documentary came out it has spoken to me a far more balanced portrayal of reality than much of the other 'awareness' out there.

I also used to have a white mohawk (and blue and pink) so there's that. And add to that, I like country as well. My kid's never going to fit in a box, or even several...

Ginger Stickney said...

Janet: Rock on Thrash metal is one of my favs as well:)

Extranjera: Agreed. I always needs Jude would be human (of course) but I did struggle with how she was going to fit into our family. It seems really stupid now but when I was pregnant I was kind of freaked about this. Regardless I want to see this documentary. Just the intro was shattering in an awesome kind of way.

Ginger Stickney said...

And I should add that if she wants this she'll get it:P I have all expectations that none of my children are going to meekly let me run their lives. We don't roll that way. I don't want to roll that way.

It's just that helps to see Ds looking us. It's freeing. I am not the June Cleaver of the special needs world ya know?

And I can't say that I like country with the fine exception of Johnny Cash and Pasty Cline:P But I do run the range from punk to metal to Indie:P

Down Wit Dat said...

I love this. Hard.
I am glad to have found you.

My name is Sarah said...

Good video!

Ginger Stickney said...

I'm glad you liked it Sarah. They're a great punk band even though I can't understand anything they're singing about.

Extranjera said...

The song in this clip is called 'Päättäjä on pettäjä' which translates to 'the legislator/ politician is the one who deceives.'