Loved this post from What do you do, dear: Learning when (NOT) to talk to strangers about my child’s disability. She says that when she was first learning to adapt to her son’s spina bifida and paralysis, she would make sure to correct the heck out of every stranger who made an innocent, incorrect assumption.
I was basically punking any well-meaning stranger who happened to cross my path. No one was safe. There was the older gentleman at the camera shop who noticed my stroller and commented that my son would be “running all over the house in no time!” To which I smilingly chirped: “Well, he doesn’t move his legs, so he’ll probably be all over the house in a wheelchair!” Or the woman at the park who went on and on about how fantastically clean my kid’s shoes were: “When you don’t walk it’s a lot easier to keep them clean! Hardy har har. . .”
She recognized that this oversharing embarrassed her and made the innocent targets of her truth bombs feel guilty and ashamed, which was not her goal. She says,
My penchant for TMI conversations didn’t come from hurt feelings or defensiveness or even the desire to spread awareness– it came from insecurity and inexperience (and also, from being a knucklehead). I was so hyper-aware of our situation that when strangers assumed my child was on the typical trajectory for milestones and growth, I didn’t know how not to set them straight. It was like being stuck in one of those commercials where everyone thinks they’re eating delivery but you know they’re really eating DiGiorno. How can you not shout that kind of truth into the void? That kind of secret can not be contained!
I love how she decided to make a change in her attitude and her approach. Sure, if someone wants or needs to know the details, then by all means, educate. Sometimes that’s what the situation warrants. But it’s not always necessary to bash people over the head with the whole truth, especially if they mean well and there is nothing to be gained by making everything all awkward.
And, more importantly, truth is a magnanimous thing, like a tree that bears several different kinds of fruit. She says:
And if a stranger wants to gush about what a “good boy” my son is for keeping his shoes shiny and clean, then I’ll chuckle and nod and keep our diagnosis to myself. Because, honestly, it doesn’t matter why they think he’s a good boy– he just is.
Lovely. Read the rest here.
I hope this doesn’t offend anyone whose children are dealing with disabilities, but so much of what she said — the mistakes she made, and the changes she decided to make – rang true for me, as a mother whose life has so often been out of step from most of the people we meet. When we were homeschooling, when we started having more kids than anyone could even imagine having, when we were super duper broke, and so on, I felt so, so different. I was insecure enough to feel like I had to make sure everyoneknew that we knew were different, that we liked being different, that being different meant that we are smarter and tougher and more interesting and more courageous than you could ever imagine with your walking down the street in your clueless, pedestrian way, because we have lived life to the lifiest, and so on.
“OH, the four kids wrecking up the doctor’s waiting room are nothing, I have FORTY-SIX more kids at home, and here is a picture of all 723 cousins at our last family reunion. Now say it’s beautiful or I’ll know how little you understand about the beauty of life!!” or “Oh, you think it’s rough looking for meat that’s on sale, maybe you need to hear about the time I ATE NOTHING BUT HOT DOG BUNS FOR SIX DAYS AND WE COULD SEE OUR BREATH IN THE KITCHEN THE WHOLE TIME BECAUSE WE CHOSE TO BUY A BOOK ABOUT THE SAINTS RATHER THAN HEATING OIL.”
Urp. Sorry about that. It looked like arrogance, but it came from a profound insecurity. Before anyone could discover what a loser I was, I was going to preempt them with the truth, and if they avoided me after that, then it just showed that they couldn’t handle etc. etc. etc.
Meh. Let’s just relax. Most people have gone through something painful or difficult, either in the past or in the present, and they don’t feel the need to carry a sign announcing it to everyone. Most people are not out to offend. Most people, when they make a nice comment, are just trying to be decent human beings, so why not return the favor and just be human beings together?
This is what people mean, or ought to mean, when they say they learned so much from their children. It’s not about your suffering and struggles vaulting you up to some superior pedestal of ultra-understanding, and it’s not about your duty to go dragging unsuspecting strangers up to your lofty level.
Really, if you’ve learned so much through your struggles with your own experience, then the main thing you ought to learn is how to be humane to other people. It’s easy to love and understand people whose lives look a lot like ours. It’s harder, but much more valuable, to learn how to acknowledge that we are all alike at one level or another. This is a truth to pursue and cling to!