Thursday is World Down syndrome Day, and I've noticed a run of blogs with the theme "I am..." I assume there is some kind of secret I've not been let in on. This morning I was trying to decide if I was going to jump on the train. Then I read this while drinking my morning coffee. She's right. Awareness isn't enough.
It's like, I thought, asking people to be aware that there are, you know, Hispanic people out there. Blink.
H was in New York in the early part of this month, leaving me home with the younger beasties. H has always been super positive about Jude and DS. When he wasn't around it was easy for me to get really morose and hung up on it. I had a series of what I call DS days when I had a hard time not seeing in Jude's features all the physical markers. And I'm ashamed to say I kind of got obsessed.
I felt like people were looking at oddly, trying to guess if she had Down syndrome or not. I am open to that being paranoia but I am used to people looking at my kids in questioning ways. People have asked me outright if they were adopted. Some would do the subtle "Wow your kids are so dark." Which is shorthand for what race are your children? I usually just ignore them because really it's no one's business. But with Jude I find myself blurting out to total strangers that she has Down syndrome.
Blink.
Why do I not blurt out that Rowena's father is Mexican.
Or that Umberto is a boy?
I never spent hours getting hung up on my kids darker skin, their chocolate eyes or dark hair. I was never concerned that people would guess they were Hispanic. Aka I was proud. It was not something that I felt had to be hidden. And I realized that when I blurted out that Jude had Down syndrome, it was with a sense that I was revealing something not so good. Then I was pissed off at my self...because I don't want to feel that way about Jude or about anyone with Down syndrome. It was a painful but important moment for me.
You see Jude is not just someone who has an intellectual disability. She is also Hispanic and female. She is a sister. A future lover. She is more importantly human and as such deserves to be seen with pride. Pride. Not awareness. And this is important because I have felt compelled since having my children to install in them a sense of pride in who they are as people...in all that complexity. They live in a world that loves labels. They are racialized, gendered, intellectualized. There are so many boxes to check.
The Hispanic community is one that is often invisible to many people especially the community of undocumented workers. But lately they have been brought to light...as a demonized other that is responsible for the economic down turn. They have become a convenient target for the fear of a society being eaten alive by capitalism. But you know, the community is not promoting awareness. They are not putting up cute memes of their loveliest members. Instead they are fighting.
And through their cry for justice they are also making people aware. You know these kids right? They're the dreamers. The kids who were brought over when they were young by parents desperate for a new life. Maybe even a better life. These are the kids who GA doesn't want to let into college. And they're not putting sweet memes up. They're fighting. And I am proud to stand by them in their fight.
What I'm realizing is that there is another fight out there, and that it's a fight that needs more coverage. A fight for another group of people that is too often ignored. People with intellectual disabilities are often denied real health care. They are brutalized by the police. Sometimes they are even murdered. People with intellectual disabilities are at a greater risk for sexual abuse. They live in greater poverty than the general population. Luckily there are people out there fighting. Check out Down syndrome Uprising and join the revolution. Because you know I am proud to be a part of this movement as well.
This is who I am. And this is who I hope Jude becomes. Like all my children I hope to raise a beastie who fights the power.
7 comments:
Lovely post!! I will say that you are totally not alone in that wanting to tell everyone about her having Down syndrome. For Samantha's first year, I was totally obsessed with whether or not anyone knew, thinking that people might be thinking, of me, "oh, poor woman, she doesn't know her baby has Down syndrome," so I made it my mission to ensure that they knew that I knew. Silly, I know, but I think it's a natural part of what a lot of us go through. I think it was also, in part, my need to just *talk* about it, to see if that connection existed with anyone else. We go through a lot in the beginning, but rest assured, it just becomes part of the background after a while. :-)
Thanks Becca. It's such a struggle for me, and I'm glad that it's "normal." I also think that I could do this with pride as in "Yes my baby had Down syndrome and she's the bomb." I'm making myself move to that space!
You really put into words something I've been wrestling with, regarding the telling everyone your baby has Ds thing. I did it too, still do it more than I'd like. You're right. Why would I go around making an announcement about my kids being half Asian? I have confidence and clarity in how I view their ethnicity, and I'm really still working on how that works out with Ds. Loved this post. :)
Looove this post: Nothing to Declare-Demand Everything.
Reminds me of the old ceremony when entering another country: nothing to declare. To what 'authority' are we declaring in these cases? and why?
Yes - Great Post.
Excellent post, as always.
Thank you for sharing it with the hop.x
You know I went through that as well. The blurting out. My daughter is autistic and quite obviously so (to me anyway). There was a time where anyone would look or talk to her I'd burst in with "umm, she's autistic". And they'd usually be like "oh I had no idea" and I'd kick myself for over-sharing with this stranger who was just making small talk and was not really probing into her (as I suspected). I think we are sensitive at the beginning, it takes some getting used to, society's views that being different is not ok are still ingrained, even if we didn't realize. And then we shed that skin and become the advocates our kids need :) lovely blog.
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