Thursday, July 11, 2013

A Year Ago Today, or Letting the Past Person You Were Deal With Her Shit

Last year, on the 11th , I spent the day in a fine state of anxiety. The Dr. who had performed my amniocentesis had said there was a possibility that the 11th might be the day they received my FISH results. I practiced being positive by telling my mom and H "Down syndrome is not a big deal. It's going to be okay." My inward reflections were a bit more complicated. I would go to the bathroom and cry quietly because I didn't want my mom or H to worry. At about noon, I started to relax because even while I did want to know, I also kind of didn't. There was a bit of peace in that in between land but if I was honest, it was peaceful because I would tell myself that Jude did not have Down syndrome.

The peace was shattered when the phone rang at 2:00. The results were in. Jude had Down syndrome. I  spent a lot of the day weepy. Not from sorrow or regret. I was scared. I didn't know much about Down syndrome. I cried from the fear. But I also cried because people reached out to me. Women on the pregnancy board at Baby Center told me it was going to be okay. My friends told me it was going to be okay. My husband and my mom told me it was going to be okay. The only one who worried it wasn't going to be okay seemed to be me. '

But what I did know was important. I knew that I wanted this little fetus growing in my belly as much as I had wanted all my other beasties. Love is a powerful thing. But sometimes even love's light doesn't chase the shadows away.


The real stuff happened in the coming months. The hard stuff. The good stuff. Because here's the thing. I wouldn't go back in time and tell the past Ginger anything. She had some shit she needed to work through you see. And yeah my bad ass future self feels a little bad for her tears and boohooing BUT...

Well let me haul out my favorite Audre Lorde quote: "I urge each one of us here to reach down into that deep place of knowledge inside herself and touch that terror and loathing of any difference that lives here. See whose face it wears. Then the personal as well as the political can begin to illuminate all our choices." I used to focus on the Master's tools part of the quote which I left out in this space because I realized how incredibly fucking important the remaining piece is to becoming a person of conscience, compassion, and action. You see the personal as political isn't about your warm fuzzy feelings, or about spilling your guts in a tell all memoir. Instead, it's something harder, something that requires work, and frankly, something that feels pretty damn awful while you're going through it. The personal only becomes political when you finish an examination of how you embody the power that oppresses you and others. When you root it out, acknowledge it, and turn into an impetus for change.

What happened is that for the next five months, I had to do this hard work. I had to face my own prejudice about people with intellectual disabilities. I'm not going to make any excuses for myself either. It doesn't matter that I didn't know anyone with Down syndrome. Not knowing people who are different in various ways is not an excuse for ignorance or intolerance. Nor does it matter that I was scared. I say this because I had to be frank with myself. I knew better, you see, because I have studied difference. I have lived with it in various ways. But there was still deep inside me a fear of a certain kind of difference. A fear that came from my own arrogance, my own insecurities. I who had placed so value on the academy was about to give birth to a child who challenged if that was even valuable. 

And trust me I believed some bad shit. I thought she was going to be hideous and thus had to root out all my bias on difference being beautiful.  Difference is beautiful I would come to see before I even laid eyes on my lovely daughter. People with Down syndrome are beautiful. Very. In fact, I think beauty is so much bigger than I ever allowed myself to see.


I thought people with Down syndrome were dull and uninterested in the world. I began to read about people with Down syndrome. They were clearly engaged and excited about the world. Many were artists. Some were activists. And most were just average people like me. Living life as it came at them. 


I thought that Jude would be a drain on her siblings. I worried that I would spend so much time "fixing" her that they would resent the lost time. I feared they would not want to take care of her when she was older. What I learned is that people who siblings with Down syndrome have more positive experiences than negative.

Maybe he loves me TOO much.

Somewhere along my dark journey to true love, I also learned that people with Down syndrome sometimes go to college. But by that point it no longer really mattered. Because what I had really learned through all this was that people with Down syndrome were different, yes, but different in the ways that we are all different. They were different from each other. Different from me. They were varied, individual with different interests, passions, lives. The only one common experience they seemed to share was that a lot of people didn't see them as being fully human. People like me. And then I shed some tears about my own small cruelty found in ignorance. But after those tears I pulled on my big girl panties. Because seriously? You don't want to fuck with my beasties. And there's a fight to be had here and now for Jude and for people like Jude. Human people. Real people. People who deserve equal care, equal rights, and the opportunity to live a full, varied life. 

The personal became the political before I even held Jude's tiny body in my arms. And that is how I became a better person. Not through Jude but because I wanted to be a better person FOR Jude. FOR my other beasties. FOR the world. So no I wouldn't go back and give the past Ginger any tips. She clearly had some shit to work through.

Jude says "Rock on with the outrage."





10 comments:

TUC said...

Excellent post.

Rachel Douglas said...

I know I am gonna read this like 5 or 6 more times because I love it so much but this keeps calling my eyes to re read right now...Love is a powerful thing. But sometimes even love's light doesn't chase the shadows away.
Thanks for dealing with your shit so openly and honestly.

Ginger Stickney said...

Thanks ladies. I feel like if I could do this anyone could you know? I wanted to get this right in a real and honest way because it was painful for me to face these things. And I hope that maybe those who don't have kids with Ds can get where I did as well. I wish it happened sooner. I can't say enough times I'm glad I got her, and I'm glad that through her I got ya'll.

Extranjera said...

This is an amazing post. Rock on Mama!

Crystal Rhew Staley said...

This is great Ginger!

T McCallan said...

Love this...so honest & raw...I had some of the same emotions...thanks for sharing...
t @ Happy Soul Project

chantell said...

I LOVE your writing Ginger. So honest, so poignant, so brave, so true. Every time H posts a link to one of your posts and I read, I am moved. Thank you.

Anonymous said...

Ginger-I want to thank you for all you do. My daughter is 10 months old and was diagnosed with DS at birth. It's refreshing as a dad to read your very open and honest posts.

Stephanie said...

Beyond good, beyond amazing--it is the truth. Such a powerful post that MANY people can relate to!

Momma said...

Beautiful. Personal story: I was so miffed yesterday. We have some teens who volunteer who are also on the autism spectrum. Many of our staff don't want to deal with them--they come and get me. Really? It's not like I'm "autism certified." My trick? I just treat them like people. How hard is that? Rant over. Hugs to you and all the beasties, but especially that little squishable one--I could eat her up!