It sounded, from a distance, like a typical row between parent and child. Child wanted. Parent said 'no'. A conflict began which will be repeated millions upon billions of times throughout all time. I pushed round the corner and found that the parent was sitting on a chair, holding those kind of running shoes which flash lights, in her hand. She looked defiant. He, her son, a wheelchair user, looked equally defiant. He wanted them. She didn't think they were a good purchase.
I didn't remark on this at all. Ordinary. Typical. Big deal. He then said something and she said, 'Like you aren't stared at enough.' Suddenly I froze. Actually stopped rolling. A chill ran up and down my back, probably in flashing sneakers. His voice rose, there were unshed tears in the tone of his voice, 'I don't care if they stare at me, they'll stare at me no matter what I wear. I like those shoes, I should be able to wear what I want. I should not have to get permission from anyone else to wear what I want.' She tried to calm him, cause he was very upset, 'It's you who don't want to be stared at, isn't it, well, then you better get a different kid.' Now she was crying, he was crying, and in truth, there were tears in my eyes too.
I don't know if sneakers were bought, I trust they probably were, but I do know that this is a conversation that they will both think about and both tell in the future, she in her way, he in his. But I wonder if she will ever think that this very conversation meant that she had done a hell of a job in parenting. He was clearly coming into his own. He's clearly moving into a 'disability pride' frame of mind. He's clearly beginning to see that others who stare are staring because they are starers - not because he is who he is. He's clearly coming to see that he needs to make decisions, not based on hoped for acceptance of others, but simply and only for himself. He's going to be a strong voice in the world, I know that because he already has one. I wonder, too, if he will regret those words spoken to his mother. I wonder if he'll understand the hurt that was caused. I wonder if he saw her desire to protect him was not the same as her acting in complicity with those who stare at him. I wonder if he saw that he had a mother who allowed him room to fight and arguement - a mother who gave space to dissent. I wonder.
Later, I thought about what the mother said, I realized that something like that was said to me somewhere. I don't remember where, I don't remember the situation ... but I do remember what it was about. I wear hats when it's cold and hats when its too hot. I have purchased these broaches to wear on the hats. One is a crown. One is a bright red hat. They are small. They are fun. Hat on hat. I like them and I get a surprising number of compliments about them. But one day, somewhere I don't remember, someone said to me, upon seeing my hat with crown, 'Like you don't get stared at enough.' I was startled by the remark and stored it somewhere inside, then forgot about it.
Until I heard it said yesterday. That kid got it right. I'm not going to be stared at more because of my hat, and, I need to remember, staring is a result of another's rudeness not because I exist. It's so easy to blame yourself for another's behaviour. It's easy to think that I need to captulate to the opinion of others. It's easy to think that my difference is my shame, that their staring is a valid social judgement. Easy. It's much harder to hold others responsible for other's behaviour. Self hatred requires accepting the verdit of the world. Pride means facing down a world who's got it wrong.
Several years ago I did a two hour documentary interviewing leaders in the disability community. CBC radio played it and it received all sorts of recognition, Life, Death and Disability it was called. In it I managed to interview leaders in the disability movement about how disability is perceived and their views of the world as it's socially constructed for people with disabilities. It was a life changing experience for me. I think, that if I was to do it again, in five or ten years, I'll be interviewing that kid. And I hope if I ever do, he'll be wearing sneakers that flash.
the staring or better the trying not to stare part is such a hard thing to learn.
As a child and until today I am stared at. People see my fingers or my cyanotic complex and stare at me. Some people sometimes have the decency to ask what happend and how I got those "stigmas of cyanosis" (phrase from my medical printout by my cardiological Doctor.
Learning not to stare is like learning to deal with my own differences and those of other people around me. It is learning to accept that everyone is different. And that is a very long way to go in the learning department.
And my little nice has such bliniking shoes. And even at mid thirtys I still would love to have shoes that blink while I walk. They make me smile.
PS. I loved all your last posts but the ideas floating through my brain while reading those were so complex that I was not able to put them down in sufficent comments.
This was hard to read. Definitely hit a sensitive spot in my heart. You give the mother a lot of credit in your analysis of events, and I sincerely hope she deserves it. This sounds so much like the kind of argument I used to have regularly with my own parents. But no matter how clearly and honestly I tried to express my feelings, and no matter how many tears were shed, they never heard me. To this day, our relationship is very surface level, because I can't trust them with things close to my heart, and because they don't know the first thing about disability pride, or about what disability's meant in my life. The boy in the store clearly has a strong voice; I hope he also has people listening.
Kristine: I don't know what happened, I don't know if he got the sneakers. But I do know that I felt concern in her voice, I saw how they looked at each other - even when angry - and I saw, in her hurt that she wanted no other son. But this is all the musings of a passerby. I know the pain of having parents who wish for a different child, I hope, like you, that this is something he does not experience.
The first time I saw that crown on your hat I thought it looked great. Then, later, it struck me that you shouldn't wear it because people will stare. Now, reading this, I am so glad I kept my mouth shut. Sometimes that is the smartest decision I make. I don't have the courage to sign this one.
I love your take on this Dave!
Kids who can argue with their parents like that are, as you pointed out, feeling safe enough and strong enough to make a contradictory point.
In the heat of the moment we all say things we don't really mean and we need to be forgiving and forgiven in these matters.
I really liked this one Dave!
I loved this post, as a mom especially. I often twitter your blog because I find it so inspiring, relevant, or thought-provoking. This one got RT'd & favorited a lot. Thanks Dave...for seeing things the way you do.
As I started reading this post, I fully expected you to critisize the mother... but while she may not be perfect, your insight that her parenting got him to that point was very good. Next time Ricki disagrees with me in public, I'll try and remember that it's my own "fault" LOL! Indeed, I find the line between protecting a teen with a disability and allowing them to make their own choices to be a very fine one.....
This post sat in my brain overnight, churning away, and reminded me of my own frustrations with my mother, growing up.
And yes, as a teen, even though I knew that her worry over public staring, came from an honest place of pride and love, it could still hurt.
A few years ago I realized that the Disabled-- and especially kids-- are one of a unique sets of minorities when it comes to social violence (the term "social violence" is one I borrowed from you). Many other "minority" kids who are subject to bigotry in the wide world, whether their minority is racial, linguistic, religious, cultural, etc., can find, when they come home, adults in their family who have faced something similar, and can give them advice on how to deal with it, or at least a sympathetic shoulder to lean on.
A disabled kid, coming home, continues to be in the minority within their own family (and yes, gay and transgendered kids face the same thing, so this particular facet of growing up different is not unique to disabled kids). And, moreover, it tends to be the case that all the adults in that kid's life, who are making all the decisions for how that kid grows up, will be able-bodied: teachers, doctors, therapists, counselors, et alia.
So even when you know your parents love you, and want you, sometimes, it just gets so tiring... and like a worn-out tire, sometimes, your temper just has a blow-out.
I do so hope that the arguement ended with love because if I'd have been on either end of that contretemps I would have come away with a bruised heart!
But hopefully they'll both be able to grow even further :)
I'm not too worried about whether he got the shoes. ;) I remember even as a kid, it bugged me how many other kids in wheelchairs were spoiled brats who'd never heard the word "no," and never said "please" or "thank you." Although I'm 100% in favor of wacky shoes, I'm also in favor of kids not getting everything they ever want! :)
I've always known that my parents love me; they just don't hear me, listen to me, understand me. If my mom had walked away, teary-eyed from that conversation in the shoe store, she would have told the story later about how tragic disability is, and how disability makes her kids feel bad about themselves. She never, in a million years, would have recognized that in that moment, disability wasn't what caused pain; it was the parent's reaction to disability that was hurtful.
CapriUni said it well. Unlike many minorities, disabled kids come home, and are STILL the minority. I see so many parents who love to see themselves in the role of fearless advocate, ready to take on the world, without ever acknowledging that their child is part of a world they know next to nothing about. When your child is part of an entirely different social sphere and experience, there needs to be so much listening, so much openness to learning.
I really respect the parents who have kids with disabilities, and then reach out to adults with disabilities for advice and insight. I hope the shoe store mom falls into that category. :)
Hi Dave from Sue in Australia,
your post on staring resonated with me as I grew up with a physical disability and hated being stared at.
My sister and brothers hated it even more, and I think my Mother did too, but bless her, never said so.
I agree with you that it is the rudeness of others, that is the problem, like the parent that shushes a small child who wants to know "Why is that lady in a wheelchair?"
If I get the chance, I say to the parent its okay and then tell them (the kids) in the simplest way that I cannot walk like they do and this is how I move around. Most children are really happy with that honest answer. What's the big deal, it isn't like we people with disability aren't out there and hidden away? More education and awareness needed I guess especially for the children.
It's funny how parents are. I was 20 when I became disabled, but I was still living with my mother and we had a very similar conversation when I was telling her about how I wanted my new wheelchair to look. The one I had was a very standard black hospital style one and I wanted one of the sleek, bright purple chairs with flashing light casters. And she asked if I really wanted it when I was always tired of people staring at me. I told her that people always stare at me regardless and I like bright and flashy things.
Now when she goes out with me (and I'm in my bright purple flashing light chair) she does all the glaring at people who stare at me.
This story made me cry and I'm, honestly, not sure which part caused this reaction.
As a parent I'm guilty of doing this,in a way, by dressing my disabled daughter in brand name clothes and taking the extra time to style her hair each morning. Why do I do this (she'd be happier in her P.Js and the hairstyle lasts 10 minutes)? Partly, it's that I don't want people staring at her any more than they already do. The second reason is that I want others to see that she has every bit as much value as a neurotypical child and is worth people's greatest efforts.
I wrestle with my personal motives and the messages I'm sending to my children every day! At the end of it all, most of my actions are done in love, but life is messy and complicated and I can only pray that I'm not messing things up in the process.
I like to believe that this mom is one of the many moms that are lovingly trying to figure out how to make things better for their child.
Trainspotter--For what it's worth, I fully support your putting the time and effort into your daughter's appearance. :) It's always bothered me when I see kids with various disabilities who just look completely disheveled, dressed in whatever mismatched, crappy clothes were pulled out of the drawer that morning. Kids in wheelchairs whose clothes are all twisted and never pulled down properly. There's a HUGE difference between an active kid who can't keep a hairstyle in place, and one who's obviously never been given a real hairstyle in the first place. I think it's sad. Sure, we ALL, especially kids, would be more comfortable spending our lives in pajamas. But when some kids have the appearance of "it doesn't matter; they don't know the difference anyway," it really rubs me the wrong way. Part of taking care of yourself is putting some care into your appearance. It only follows that taking care of another person involves attention to their appearance. I don't feel like that's caving to social pressure any more than it is when ANY of us try to dress in the right brands and styles.
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