Monday, June 16, 2014

Proving Worth

I have a confession to make. I usually read the comments on articles about things like immigration, race, and disability. I know, I know, never a good idea but frankly, they give me perspective on how people think. Everyone always dismisses these commentators as "trolls" but I am not sure they are so easily categorized. After all, there is usually more than one person saying these things, they usually sound quite reasonable, and they have many "likes". These are not the people who are ranting using hate filled language, and slurs. No the comments that scare me the most are the ones where everything sounds so logical. I see this mostly underneath the articles about Down syndrome especially in the context of prenatal testing.

Through these comments I have learned that my child is not worthy of life. I have been told that I had a societal obligation to abort her. She is, after all, a drain on society. She is "useless." She is "ugly." She has nothing to give. She's going to be a "lump," a "burden," on all working adults. 

And sadly I often find that I have these conversations in person as well. They are of course not worded as above. Instead they are framed in more "humane" ways. The talk of how it's really blessing when a sick child dies. Or questions about how "functioning" Jude is or when will I know how "functioning" she is. The reassurances that she doesn't like she has Ds or that she only has a "little." She's not delayed. While I am sure these comments are well-intentioned, they make me feel like I have to defend Jude. Because, after all, if she is not "high functioning" or "normal looking," she is going to be a burden.

I didn't spend my days before Jude thinking up reasons to allow my children to live. I went about my days with the quiet assurance that they deserved to be here. I didn't even think about the ways I could prove that they would contribute to society. I didn't need to because no one really demanded me to offer up a laundry list of how my kids would fit in, support themselves, etc. 

And then I had Jude. Perfect, beautiful Jude, and suddenly I was thrust into a spotlight in which I didn't wish to stand. A place where too often I had to defend my child's very right to exist on this plane. For awhile I did. I cringe when I read some of my older posts where I try hard to prove the
worth of my child. I pointed to the things adults with Ds were contributing. How beautiful people with Ds are. How these adults are often independent. How they have fulfilling social lives and meaningful relationships.

One day I realized that I, personally, didn't have very many meaningful relationships. In fact, most of my relationships were kind of disastrous. I am socially awkward and often alienate people once they get to know me. I am doing nothing with my degree. I spend a lot of my life playing stupid games on my Ipad or reading really bad mystery novels. I am not sure that my contribution to this world equals what I have taken away. Hell in fact I am pretty sure I haven't earned my keep. Yet here I was trying to prove my daughter's worth. 

I'm done. I am sick of it. Jude has as much right to breath the air as anyone else. I have no idea what Jude's future will look like but I don't know that for any of my kids. I doubt most of you can provide
can accurate future prediction for your own child. Yet we are often demanded in subtle ways to do just that such as when our politicians call our children the future. We, as a society often, see youth as an investment. Well at least certain youth. Because here's the thing: there are a lot of kids who get left out. Kids like Jude. Kids who are poor. Kids who don't go to the right schools. Kids who don't buy into the right ideologies. Kids whose parents are from the "wrong side" of the border. Kids who makes our kids' clothes. I could go on but I think you get the picture.

The reality is that most of us are not going to offer any kind of life changing invention for humanity. Most of us are not going to cure cancer or end world hunger. Really we are not such great gifts to Earth anyway (check our global warming. We did it. It's a fact.) But we are all here, and damn it, we all have the right to exist. Including Jude. I don't need to defend her to you or to myself. Her presence in my life makes her worthy to me. The way her hair smells after a bath. The sweet heat of her sleepy breathing as she curls against me in our bed. The way she laughs in joy at her siblings antics. Her screams of pleasure when we bring her to the pool. In the short time she's been here Jude has already done the most important thing a human can do. She's given us love, beauty, and hope simply by being here. 


Angel Niffer said...

♡ Sometimes I can't find the right words, and sometimes I don't feel my words would be good enough to say how I feel. But thank you. I don't want to have to live my life trying to justify why my daughters life is just as important as any other child. I just want her to grow up as Emilee and be loved as Emilee and be treated like every other Emilee that's alive. ♡

Kathy Deller said...

So glad you are back. I've missed your writing.