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.
Seriously. If I read another local news story about how Girl/Boy 'Overcome' Disability Nominated Homecoming Queen/King, I'm going to puke. This is not acceptance or mainstreaming, this is charity… if it weren't, it wouldn't be making the news. (Call the papers! Look at what an accepting school we are!) Urgh.
I'll drink my coffee with you anyday.
Thanks for always digging a little deeper and shining a light on the things that are tough to explain, discern, and digest, but need to come out.
Glad I know I'm not the only one who believes this!
I was told from the minute Casey was diagnosed with autism that we were chosen to have such a special kid. So when Abby was born with Down syndrome, I immediately internalized it. GOD CHOSE US! WE ARE AWESOME!
While that narrative can be comforting with surprise diagnoses and whatnot, it does not last. It puts the mother or family on a pedestal that is impossible to live up to. It makes other people think that there is some difference between us and them. It makes people think that we don't need help because we have been endowed on high with an extra bit of whatever that helps us get through the day.
And it's wrong. We're the same as any other parents. If God only gives these kids to chosen people, why are so many of them aborted? Where's the sense in that? I think things happen. I believe that my kids were MADE this way-whether by the hand of God or nature as it's course, this IS the way it is. But I do not feel like ALL of us were chosen for this.
Love you, M.
I have been giving this a great deal of thought today. Let's see if I can articulate those thoughts into words. I roll my eyes at "special parent", "perfect parents for Hailey"….blah, blah. Do you think some people automatically say those things because they don't know what else to say? I think disabilities, birth defects, diagnosis, etc make the general public so incredibly uncomfortable that they don't know what else to say. If they say "you're perfect parents for her", then they can deflect from the fact that they are saying to themselves they are glad it's not them because they "couldn't or strong enough" to do it.
I definitely don't think I'm a special parent or more equipped for my daughter, but I do truly believe Hailey was meant to be a part of our family. She's a perfect fit (where as I know a few typical little girls her age that would drive me mad!).
I agree with you on both counts… that people say that kind of thing because they are not sure what else to say that would be “good” and that my child is also the perfect fit for our family.
I think I’m more rallying against the automatic notion of us being “chosen”, that others simply couldn’t do what we do because it’s too hard or something. Disability as inspiration porn, too…
Oh, I forgot to comment on that part. I think that is because of the world we live in…the idea and drive to have a perfect world a perfect life. Most people truly believe if anything goes wrong in their life that they will be not be able to go on. That their world will stop turning…everything will stand still. When they see someone with a disability or someone who has overcome some huge obstacle, they are inspired because they don't believe they are strong enough. They don't truly realize, you don't have a choice. You pick yourself up and live or curl up in a little ball.
I think that the knee-jerk negative response that many people with disabilities (and those that support them) have to the idea of being called "inspirational" is difficult to understand for people with little experience with disability. I've been thinking about this a lot lately and want to get some thoughts down about it. I really appreciate this post. And along the lines of what Michelle just said…I regularly tell people who ask me, "How did you get through having a stroke and doing your rehab and learning to do everything again?" that they'd do the same thing – you deal with what you're dealt with, and you get on with your life, because what other choice do you have? And everyone does that every day with whatever they've been given to dealt with…for things that too me seem much bigger and much more difficult to deal with than anything that I've had to…but for some reason disability seems like the end of the world for a great deal of people, and I think that's because of the social messages that we get about it.
Yep–inspiration porn! I love that term, and I use it in my classes now.
I came here via Love That Max and…yes. YES. I have a draft of a blog post that is working through some similar thoughts that I have, but it's always SO GOOD to read something like this and know that I'm not alone in my perspective. Thank you for writing this!
I’d love to read your thoughts when you have it all posted!
If that's not articulating it, then I don't know what else is! Bravo!
I agree that there can be emotional disabilities from having to survive something awful and physical or mental disabilities through something medical, neurological, accidents, etc. and one is not necessarily worse or better than the other, depending on situation.
BUT I also believe that anyone who can be successful & happy, if even just eventually, when dealt with something that makes life more challenging in some way can be thought of as an inspiration – or at least a good example to make us feel that we all can be or do more or try to find some positive in life.
I totally also agree though with how ridiculous it can be to say that a higher power chose a certain person or family to go through anything hard at all. I despise, utterly despise, the statement "God only gives you what you can handle." Really? Really? Well eff him on days I can't handle it.