I’m still trying to find the right words to say what I mean. Here’s Take 2.
Visualize: “Janey”. Her hair is dark, she’s got a Master’s degree in biochemistry, which is her field of passion. A rockin’ job, supportive boss, 6 figure salary. A husband that loves her, one young son. Parents who adore her. She has cerebral palsy. She walks with a toe-first gait, her disability is clearly visible.
Then there is Sandra. Sandra was molested as a child. She then spent years years abusing herself. While she did go to school and receive her bachelor’s degree, she struggled with alcoholism and drug addiction, “band aids” for her pain. Sandra doesn’t have a lot of money but is good looking and bright.
Sandra is told to pity Janey. Janey has the disability, remember? And our culture tells us that people with disabilities are less fortunate than people without disabilities.
There was a pretty ripping birth story that was posted on my Mommy Group Board a while ago, about a mother receiving the extra surprise of Down syndrome, along with her new baby.
The thing that kills me is a lot of follow up Mommy comments went along the lines of God choosing “them to be mothers of these special babies…” and stuff like that. You know, God-chosen. Special.
I am deeply in love with God, but I think that’s hogwash. What about it makes sense? I do think there is such a thing as ‘tests‘ – things that happen in our lives that provide an opportunity to strengthen, temper our spirits into some stronger stuff. I think it’s how we respond to given situations, the choices that we make, that define who we become in the course of our lives. Right?
Anybody can have a disability (it is, as they say, the only minority group anyone can join at any time!). Everyone is sooner or later affected by disability. Be it their own selves or a family member or friend – I don’t care WHO you are, if you are human and if you are alive, you are going to be affected in some way in the course of your life. If you are not already.
So what does that make us all? God-chosen? We’ve all been “touched” by disability (or will be). Why does disability need to be so very ‘special’? It’s a natural and normal part of the human experience if it does indeed affect us all. Why do we need to say of mothers who have a kid with a disability as being better, stronger, more equipped than mothers of kids without disabilities?
This bothers me.
It reminds me of a time, years ago, when I visited my Dad in his 5th grade classroom. He had a picture of this kid taped on the wall, who was grinning from ear to ear. The kid was in a power chair, hooked up to all kinds of ventilators. A firefighter was crouching next to the kid.
I asked my Dad who the kid was. Dad said he didn’t know. So I asked him why he had the picture of the kid taped to the wall. Dad said something along the lines of the kid just being alive! And smiling! Wow!
I got pissed and I was like, so, by virtue of the fact that he’s in a power chair and using ventilators, we’re supposed to be celebrating him, and just in awe that he’s smiling? That he’s happy? What bullshit! What kind of message are you sending to the kids in your class that go home to loneliness, neglect, misery and poverty? To a parent that beats them? You are saying that because they can walk and don’t use a ventilator, everything is okay? That we need to feel sorry for and “inspired” by kids who use power chairs? If we don’t know anything at all about their life?
Let’s think back to Janey and Sandra.
What if that kid with a disability – like Janey – has awesome parents that love him to pieces? He’ll grow up with every advantage, go to a great school. Graduate and work in a job he loves. Get married, have kids. How stupid is it to assume his life will somehow be less just because he’s got a disability? How stupid to assume a life is somehow more or easier because someone doesn’t have a disability?
My Dad had a hard time understanding what I was saying. Could be because I have such a hard time articulating these thoughts of mine. He thinks I’m angry. I’m not. Really, I’m not. I just don’t understand things, don’t understand this ‘chosen‘ stuff, don’t understand why people need to feel ‘inspired‘ by disability and why things are the way they are.
Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.