In Which I Publicly Reject Down syndrome

Today I spent some time while nursing my sweet babe reading No Pity. I'm reading the horrible sad stories about people, young people, who are forced to live in nursing homes cut off from other people their age. Lonely and isolated, they are treated as if they are ill. As if they have a disease, and perhaps even worst as if they ARE a disease. They have been stripped of their humanity as they are denied the freedom to make their own choices about their lives. I looked at my sweet girl and my heart broke a bit imagining her in an institution. Cut off from a normal life filled with friends, independence and freedom. The freedom to succeed yes but also the freedom to screw up. To get hurt. To learn from those moments. You know life.

Later, I ended up in a conversation that hammered this home because the person I was arguing with saw us asking for special rights for Ethan Saylor. And suggested training instead and a Med id bracelet.What's mind blowing is that conversation occurred in the comment sections of a post H shared. A post with a link to an amazing blog post that was talking about this very thing. 

And it hit me hard. People see Jude as a disease. When you call her a "Down's baby" she are inferring such a thing whether you intend to or not. In fact, Jude does not even have a disease. Jude is a human who happens to have an extra chromosome on the 21st Trisomy  (Camille has pointed out that she might be considered more human than the rest of us but I'll save that heady thought for Camille to ponder). Jude is not even sick. In fact, she's pretty damn healthy. There is of course a possibility that because of her extra awesome sauce, she might face extra health challenges but that still does sum total her to genetic extraness. Just like the fact that cancer might run in your family does not sum total YOU to cancer. 

I decided this afternoon that from now on I'll tell those who need to know that Jude has Tri. 21. I like that better. It's allows a conversation because most people won't know what the hell I'm talking about. And I'll get to sound all sciencey which I adore. But mostly it will be a clear statement that Jude does not belong to a syndrome. 

Why am I harping on this you might ask. Well because it's important in terms of the Ethan Saylor case. You see there is a call from our national organizations for more training. They throw in the need for an independent investigation of course but they're not really pushing for it. This concerns me. Why? Because what is training going to do in the end? Are we going to reinforce the idea that our kids ARE "Down's kids" as opposed to Down syndrome being only a part of who they are? I saw one blog where someone suggested that the should police know what people with Downs look like (maybe they'll send the horrible picture from the "I Am a Nurse" page). Seriously. I'm pretty sure training is going to reinforce stereotypes as opposed to knocking down walls.

Because here's the thing (and yes I'm crazy ass liberal) I don't think the cops need more training. They already KNOW they're not supposed to brutalize those they are sworn to serve and to protect. They also know they're not supposed to put a handcuffed person on their stomachs. They are trained already. The off duty deputies who participated in the homicide of Ethan Saylor KNEW they shouldn't be doing the things they were doing. I don't think that means they intentionally killed him but it certainly bespeaks to something. I think that something is that they didn't see Ethan Saylor as worth bothering with. He was other. Different. Not being quiet, docile. He wasn't following the standard procedure for some with Down syndrome. He wasn't being sweet. It's not surprising though because it's pretty clear why they thought this way when you read the official report of the investigation (conducted by the same department that employed the deputies). According to that report Down syndrome killed Ethan. 

With that sentiment expressed, suddenly no one is indicated in Ethan's death. How can you prosecute Down syndrome? And that's why we have to do more than training. This why I am committed to not just fighting for an independent investigation for Ethan but for civil rights for people with Down syndrome and other mental disabilities. Because the reality is that as long as a homicide can be pinned to a genetic make up the less likely it is that people will feel not  compelled to mistreat, abuse, rape, and kill our children. The time is now. Stand up. Fight. 

Want to read more? Here's an incredible write up of what I've been thinking about for days and that lead me to think about this post. She says what I'm fumbling for here much clearer: http://gardenofmyheart.wordpress.com/2013/04/12/uncomfortable-truths/

And want to do more? Head over to With a Little Moxie who has a whole operation going on...