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A Little More: To ask, or not to ask
Categories: Kids 5-7, Kids 8-11, Special Needs
The man at the library, walking with 2 canes, drags his thin, weak legs behind him up to the water fountain, and one of my boys asks, "What's wrong with him?"
I lift my finger to my mouth in the universal sign for "shhhh." All 3 of my children look at me, confused. They don't understand why I don't want to talk about it--we usually talk about everything, a running dialog on the state of the day, like watching a DVD with the comments turned on, the director and the writers and the actors all adding in their 2 cents.
Just today, we'd discussed why grass is green (and a word that begins with P and sounds like "eff", photosynthesis!) and the new, Harry Potter-esque mural painted on the library wall ("Creepy!" said 5-year-old Bennett; "Cool!" said 9-year-old Carter), so my reluctance to talk about the man using canes stood out simply because of its difference.
Just like the man, himself. And the thing is, I don't know why I was reluctant to talk about it.
Here is a man with a story to tell. One he may, or may not feel like discussing at the water fountain with me and 3 little boys of varying ages and abilities. But how he talks about his life, and how he feels about it, is something I'll never know. I won't know because I didn't have the right words to use to ask.
I've written before about wishing there were a secret handshake for people who love children and adults with Down syndrome. A way of recognizing each other in a crowd--a way of saying hello, without actually having to speak. I'm thinking here of motorcyclists flashing their headlights as they pass each other; a little gesture that announces, I see you.
My son Avery's speech therapist, Molly, would be proud of me for these thoughts. Very early into our sessions, she began trying to explain the concept of Total Communication. What she taught me was that language is only one of the tools we use to communicate with each other. There's also how you say the words--the tone you use, its timbre and pitch. And there's what you choose not to say, which often speaks volumes.
You might be tempted, as I was, to think of the '80s concept of body language, and if you're recalling those cheesy come-on lines ("I can tell by the flip of your hair that you're into me...") you wouldn't be too far off. So Molly worked at teaching me to see the complexities in everyday speech and language; and I worked at breaking down those sequences into their smallest parts, to better teach Avery.
As it happens, even the smallest parts of communication are complicated. Take, for instance, a smile: is it happy, or sneaky? Is it smiling-through-the-tears, or shy? Malicious? Or simply joyful?
Which brings me back to the man at the water fountain in the library--sometimes communicating with each other can be a very tricky endeavor. Later, after the kids and I had left the library and everyone was buckled in the car, I tried to explain, and failed miserably.
I began with a story about a man with one blue finger, and I tried to show how his finger was normal to him; something he may, or may not want to talk about. He might want to have a little discussion about it, or he might want to go about his day, drinking a cool arc of water from the fountain.
And then I realized that my story, and my reaction to the man, was based on the assumption that he would feel bad about his legs, and not want to have attention drawn to them. I don't know this to be true. And I don't know if not talking about disability is any better than talking about it.
When people ask me about Avery, most of the time I'm happy to share what I know about Down syndrome. I'd rather people hear it from us, than make assumptions. I see it as a chance to encourage right-thinking, as opposed to wrong-thinking.
But what is right-thinking, in this case? I suspect the answer is as varied as the 50 million Americans living with disability. In this instance, I take my cues from Total Communication--the man kept his back to us, his eyes down. He didn't engage the boys or me in any way; he seemed busy and intent, a person not interested in casual conversation. And therein lies the key: seeing the person as well as the disability. It's what I wish for Avery--and what I wish for us all.
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Reader Comments (Page 1 of 1)
ltmslov 7-10-2008 @ 9:43AM
My son was born with a portion of his brain not fully formed, practically missing, this is called Agenesis of the Corpus Callossum; due to this fact we know go to the doctors a lot more often. We have been blessed with the few issues he has but not all are so lucky. Anyways, we have two older daughters, 3 and 4, which attend most appointments with me. First they asked why little brother had to see the doctor so much so I simply explained that some babies need to see the doctors so much. Then came, why does brother need those medicines, and so I said, some babies need more medicines than others. Then the therapies began due to delays and so they accepted brother just needed more doctor's appointments. But with these appointments, which I refer to as classes, came the question, why is that little boy in a chair with wheels, what is wrong with that girls arm, why does he have a dog - why can't we bring our dog, and so forth . . . so came my next response, "God makes everyone different, some people are short like mommy, some people tall like daddy, some people with blue eyes like sissy, some people with brown eyes sissy, some people can walk and some people can not, some people can see, some people can not. God made us all different so we all could know how special everyone is, because he loved us enough to make us all special in our own ways." This is acceptable for now and I will need to elaborate later but for now the girls know that we are all different and it is not something to be ashamed of, but something to love and accept about others. I have also told them, "some people just need classes to learn to sit or walk or eat," in response to why brother gets these extra classes and not them, but with time new more in depth explanations will come.
I am hoping that by teaching them that differences are good and ok that as brother gets older they will see his differences as strengths not weaknesses and love him truly for who God made him, and, therefore, love all those around them for those same differences. It is not easy to balance knowledge and education, sympathy and empathy, as well as pure acceptance and love of others it is something you have to continually teach and model and hopefully with time my children will become truly understanding, loving adults.
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Baron 7-10-2008 @ 10:13AM
That is a tough situation indeed as you are correct in that you never really know if someone wants to share their story or not... But, you won't find out until you ask. I had a boss once that always said it is better to do something that you feel needs to be done and face the consequences later than waiting to get permission and possibly causing an even worse situation. I think this is a similar case in that you really have to just ask, in a polite way of course, if that person cares to share their story. What is the worst that can happen? They can say no. They might get upset a little bit, but unless they are a totally bad person, they aren't going to make a big stink about it in front of a mom and her kids. So, just ask, is my take on it. It is easier to ask and maybe find something out than to have to come up with a way to explain it to your kids. I'm really rambling this morning! That all sounded a lot better in my head. ;)
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Jenni 7-10-2008 @ 10:59AM
Since you do talk so much with your children, maybe you picked up on some non-verbal cue the man gave hearing your children inquire in this way letting you know that he may not be so willing to be discussed in such a way.
Would you have taken the opportunity had it been someone else? You can't really know for sure. Or maybe it's just something that has been drilled into you. I know as a child I was always shut down when pointing out other people's differences, rather than my mom taking the opportunity to teach me about them in the moment. Not to say she did take an opportunity later; but even still today I am hesitant to discuss or even look at any differences.
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shannonrosa 7-10-2008 @ 5:27PM
This is something I think about a lot. Thank you, as always, for your contemplative and thoughtful take on the subject. Hope you don't mind a bit of cut-and-paste:
My son's special needs give me neither automatic diplomatic skills nor diplomatic immunity when it comes to others' disabilities. I therefore appreciate the Disability Etiquette Guide published by The United Spinal Association. Though they focus on supporting people with spinal injuries and disabilities, their Guide provides general tips for seeing and interacting with people, not their disabilities. With humor! (Always appreciated.) I intend to send this link to everyone I know who will ever interact with my son:
http://www.unitedspinal.org/disability-publications-resources/disability-publications/
(Disability Etiquette is the first .PDF on the list.)
Helpful excerpt:
"...Respect his privacy. If you ask about his disability, he may feel like you are treating him as a disability, not as a human being. (However, many people with disabilities are comfortable with children’s natural curiosity and do not mind if a child asks them questions.)"
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Jordan 7-12-2008 @ 10:15PM
As always, a thoughtful and insightful piece.
I don't actually know if this is the right approach, but if my boys were curious I think I might say something along the lines of, "Are you wondering why he walks with those cool canes? Maybe you'd like to ask him what about those?" Perhaps if the man were interested in talking, he would be more open to responding to something that's been reframed in a more positive light then what children usually come up with. And the boys probably were VERY interested in the canes, knowing little boys! ;-) But I would agree that if his body language (nice reference to Total Communication, Jennifer!) told you otherwise, it's probably not best to pursue it. Either way, though, I think I'd try to rephrase what was said in a new way that might be used by them in the future. There's nothing wrong with curiosity, it's all in how it's approached, I think.
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jennifergrafgroneberg 7-13-2008 @ 8:33PM
Thank you for these excellent thoughts, everyone. I didn't _think_ he heard my boy's comment, but maybe he did, and I shouldn't assume. If he did hear us, there's every chance his body language was a result of that.
Good to think about, and thanks for the tips.
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