Yesterday, standing out in the paddock with the two youngest children, I waited for the lovely Helen from ABC radio to come up and interview me about my disability, reproductive choices and quality of life.
At the same time, I kicked a ball to Evelyn and tried not to panic.
Something I thought was nobody’s business but ours has turned into a Thing, and frankly, I have a headache over it.
You see, what you are saying when you say we should not have had a third baby, is that people like me shouldn’t exist. That I am somehow worth less as a person because of my genetics. When you judge my children based on a small string of genetic code and find them wanting, you are telling them they are worth no more than their genetics.
How is that not eugenics? This idea of some people having less value to a society because of their genetic fitness.
It’s a slippery slope, and yes, I know, your situation is different. But that’s the thing – your situation may require different choices to mine. Your situation may be entirely different.
Different people decide different things about having children all the time.
This is not the pain olympics. Your situation does not define mine, nor mine yours.
Asking me to say I was irresponsible for bringing children in to this world is asking me to regret my choices, my children. I can’t do that. I will never do that.
It also implies that had we known about Ehlers Danlos Syndrome, my mother should have aborted me, and so on, back through our family line. Cleansed the world of a genetic fault before any one could ever “suffer”.
But I’m not “suffering”. I don’t find my existence to be one of suffering. I don’t sit here, waiting for my life to be done, wishing my mother had aborted me.
When everyone else sees me as merely the sum of my disability, a collection of “issues” that they would “hate to live with” and “I can’t even imagine how you live”, I am busy getting on with my life.
This is the body I was born in. I don’t spend time regretting my inability to run marathons. Instead I do all the things that make me happy. And maybe I am lucky – my interests align well with my abilities.
I spend time with my family. We play video games and laugh uproariously. We read books. I write things (lots of things). I make soap.
Let me repeat that.
I am so happy with my life and the path I am on.
I don’t spend all day dwelling on how my joints work. Do you? Do you spend all day noticing how your ankles move? Or how your hair colour affects the way people speak to you? Or how you breathe? Or how your eye movements control what you see?
Of course you don’t.
We don’t spend every moment of every day aware of our bodies and the things we can and cannot do.
Why would you think I sit here in a pit of angst worrying about how I can’t weightlift? Or run?
I’d been loathe to write about this again, because hear this: What I decide to do with my uterus is none of your business. Not even a little bit. Not an ounce. You don’t get a say. If I decided to go and have another five babies, you still wouldn’t get a say.
My disability does not define my worth, nor does it define the worth of my family.
Remember that the next time you feel inclined to say something to me.
Comments are moderated on this post and all others from here on in. It’s not something I ever wanted to do, preferring instead to foster a group of commenters who were adult and able to agree or disagree with me without resorting to vitriol and assholery.
That’s changed now and I am controlling the conversation. If you feel the need to comment like a dick and it doesn’t add to the conversation, I will delete you, but not before mocking you on social media.
You can disagree with me. You can comment with an entirely different perspective and situation. You can talk about your own situation or your reaction to my situation all you like.
But you can’t attack me or my family personally, you can’t attack choices other commenters make and you can’t spread your vitriol around like manure on the garden.