In my book I recount a number of moments of cheerful pretending in Owen’s life (of which there were many), including:
- the accounts in Owen’s school communication book of achievements and interests–things he liked, friends he made, artwork he created–almost embarrassing to read when I knew that they knew these were pure folly and imaginative revisionist accounts. To make it worse, surely they knew that I knew as well;
- a grade school assembly in which Owen is honoured with a Leadership Award; and
- Owen’s provincial report card, telling me that he learned about space and the planets, and the aboriginal peoples of Canada.
As I write this out, I see how ridiculous this all is. I think others in my life at the time, who did not have children with disabilities, also saw the ridiculousness.
But when we’re in the thick of it, we tell ourselves these stories, attributing qualities and achievements and character to these children as though if we didn’t, there would be nothing there, nothing to marvel at. We think of these cheerful attributions as being noble somehow, or as recognizing the ‘gift’ of each child. But it really just reveals how far we haven’t come in honouring the humanity and presence of each child. For many of us, this kind of lefty, politically-correct interference and sloppy interpretation of what is actually real is irritating at best, infuriating and depressing at worst. And as I write in my book, it seems like there is no one to tell, and no one who will agree.
Of course this isn’t just about teachers and therapists. Parents can be guilty of this too. We can fail to look upon our own children with an unflinching gaze, unafraid of what we might see, without the judging or can-do motivational voices in our heads.
Might be interesting to see what would happen if we stopped feeding lines to each other. And ourselves.
I find so much relief in reading these snippets. So much relief. Thank you.
This is so tricky. And pernicious. At 180º from Cheerful Pretend one reaches Endless Proving, which was a large part of our battle with the school district. For a child who is aware of these two poles, the message from either direction is, you aren’t Real. Though my daughter taught me a great deal during our years of homeschooling and I used to be curious about how much of that work might be useful to others who shared some similarities with her, I sure wouldn’t want to be a special ed teacher charged with truly grokking (and creatively nurturing) each child in my class, all bound in whatever structure the specific zeitgeist demanded.
Hi Jen — I remember how crushed I was when Ben would bring home art projects in kindergarten that the teachers had obviously done for him. They would involve perfectly cut-out pieces of construction paper then shaped into a flower. Ben wouldn’t be able to maneuver the scissors or stick everything together so perfectly. At other times, people coloured in things for him (because he couldn’t stay within the lines).
It bothered me immensely that he wasn’t allowed to authentically produce something — no matter what it looked like!
On the other hand, sometimes I wonder where we draw the line. When you mentioned the leadership award — maybe Owen had inspired certain qualities in the other students that the teachers wanted to recognize. Our kids may not ‘lead’ in the traditional sense, but I don’t know that we can say that recognizing one of them as a leader couldn’t be real or authentic?
I would love to hear you talk about what, for you, would have been meaningful, authentic experiences in each of these areas. Because sometimes I think people want to include our kids and they don’t know how to in a meaningful way. Thanks!
@Louise – I don’t think there could be any case for a child like Owen winning a leadership award. If his presence inspires others to do something interesting they should be rewarded for it in a meaningful way. And I wonder… what about him would have been inspiring? His smile? His vulnerability? His disabilities? I think it’s all so condescending and patronizing.
I can’t say I have an answer, unfortunately. I withdrew him from school and most therapies for exactly this reason. My only instructions to caregivers (other than concerning safety and medical issues) were to do things that they themselves enjoy doing, and be sure that Owen was included and could engage in some way – tasting, touching, seeing… And to follow his cues – if he seemed to like something, continue. If he didn’t, do something else.
This is what worked for us and I certainly don’t suggest this is how other families/children should do things. Owen had no expressive language, almost no intentional movement and couldn’t initiate activities in any way – everything was a guess. For other children who are higher functioning and who can express ideas/preferences/intention, I imagine things would be quite different–and maybe ways they would authentically earn a leadership award!
Having a four year son, I’ve now spent enough time around doctors, therapists, teachers, etc. to know when someone is engaging in Cheerful Pretend. It’s never me; it’s just not in my personality. I’ve become less emotional and more pragmatic. Sure, I like to hear about some minor achievement, but I need to focus on what he can’t do in order to set goals. I find myself having to give others a reality check when it comes to both his progress and their expectations. I suppose, in some cases, they just want to offer me hope, but I don’t accept it easily. Tell me the truth, I have asked many times, not what you think I want to hear. Give me the Worse Case Scenario. And because no one knows what my son’s future holds, I often a stumbling, apology that trails into silence. Thank you for giving a voice to these ideas. It is extremely helpful and, yes, also a great relief.
Hi Jen — What if ‘being’ vs ‘doing’ was the measure of leadership?
What if Owen’s being had a positive impact on the other children? You described your relationship with him as magical in your book — why is it not possible that he could have the same effect on other kids? Not ‘because’ of his disabilities but because of his being as a whole.
Shouldn’t we be changing conventional understandings of achievement? Does leadership just mean a kid had the verbal skills and self-initiative and savvy to take control of a group of kids in some way? I have a problem with the whole concept of ‘earning’ things as a result of what are usually innate natural qualities a child was born with (e.g. intelligence, athletic ability, etc).
My son will never be ‘good’ at anything (other than having a good soul) in the traditional sense. I remember at his graduation from the alternative school he was given an award for the ‘best laugh.’ And at first a part of me thought — did they feel they ‘had’ to come up with some kind of award for Ben? But then I thought he does have a contagious laugh/giggle. Why is that any less spectacular than some kids who is naturally brainy or excels at sports?
I can’t believe that the kind of interaction Owen had with his caregivers is impossible in an integrated setting. Probably very hard to mirror/find, but not possible with teachers with great attitudes and open minds? What if the Sallyanne’s and Marjories of the world were running the program?
I guess I question why it’s not possible for others to experience the richness of our kids in the same way that we do?
Although I have to say it’s time to change these conventional awards.
Hey Louise – thanks for the reply!
You said “What if ‘being’ vs ‘doing’ was the measure of leadership?” My answer: because that’s just not the definition. To change it is like giving everyone a big participant ribbon (remember track and field days in grade school?!)… it becomes meaningless. Why not ask why we don’t remove requirements from the Olympics? Or why not wonder why everyone can’t be a lawyer?
You said Ben will never be ‘good’ at anything other than having a good soul. And by ‘good’ I presume you mean by the rest of society’s able-bodied standards. Well, maybe you’re right… and I think, so what? Do you suppose anyone actually appreciated or respected Owen more because he won a leadership award? I suggest the opposite is true. The whole thing earned a bunch of self-congratulations and patronizing smiles and put Owen firmly in his place as the always-smiling disabled boy.
If Ben or Owen or anyone else does win something I absolutely think it should be on merit. Could be about, for example, perseverance, or biggest strides/improvements in something, or most imaginative something or other, and sure, best laugh. We shouldn’t have to lower expectations or change definitions in order to include everyone.
There’s a type of logical fallacy called a ‘category error’ – like comparing apples to oranges. Many intellectual or physical or other pursuits are meant to be measured by actual ability. Period. Fastest runner is fastest runner. Fastest wheelchair racer is fastest wheelchair racer. Best laugh is best laugh.
Hi Jen — I thought the whole theme of your talk at Holland Bloorview is about redefining success — not just accepting current definitions.
I think the stigmas about certain disabilities are found throughout the population — within the disability community as well as the mainstream (it’s not just able-bodied people who say ‘this is what matters’ — it’s the culture as a whole — that’s why certain populations of people with disabilities try to distance themselves from other types of disabilities, and there’s almost a natural ‘ranking’ among disabilities in terms of what is the worst and what is the best).
I guess what I’m hoping for is a broadening in the culture of what is valued — instead of an increasingly narrow focus that excludes the real contributions made by children with disabilities in their families and beyond.
Why is it only us who ‘get’ the value of our children?
No one wants to be the recipient of a patronizing effort to recognize someone out of pity or so that they can pat themselves on the back (which is what you imply occured with the leadership award). But is it inconceivable that Owen’s contributions could have been recognized in an authentic way? If they had been recognized in one of the areas that you mention above (perseverance, etc.) what would your reaction have been?
I personally don’t have a problem with participant ribbons — I’m not a natural athlete and I think any student who goes through all those crazy races, long jump, shot put etc. knowing they’re always going to be last deserves a ribbon.
Thank you for keeping my creaky brain somewhat moving!
Hi again! Just quick ’cause getting ready for my signing :).
I am definitely all about redefining success – for yourself. Forget everyone else.
I didn’t say it was inconceivable for Owen to win an award – just for leadership.
And why place so much emphasis on awards and public recognition? It’s not the only measure of value of course. I personally rarely win anything. Neither does Angus. But I don’t need those awards to feel valued, or to value Angus more.
My personal ‘message’ is not about changing the world – that’s for others to do much more capably then me. It’s about personal agency, accountability, authenticity. Doing what’s right for yourself and your child and ignoring the rest. Not by any means an easy task.
I forgot about the signing! That will be fun! I wish I could come. I’d love to get a Starbucks and stand in line to get my book signed!
It’s not the awards themselves (I could do without them) that I’m concerned about. It’s what they stand for in terms of what is valued. We are constantly measuring success — at school, in the business world, on the fields, in the media etc — and it is always a very narrow definition.
Before Ben started to go to his new school this year I met with a professor who focuses on inclusion and he said that the Ontario curriculum for high school students is supposed to involve all kinds of content related to “character:” They are supposed to be teaching kids how to be good human beings. But that seems to have fallen by the wayside.
I think your experiences have so much to teach and that ‘doing what’s right for you and your child’ is much more achievable when there’s a broad shift in thinking.
Let us know how the signing goes!
I think cheerful pretend is better than dreary reality. But you have to be honest with yourself that this is what you are engaging in. I have been cheerfully pretending for almost 18 years now and I do believe it makes things a bit easier. It also makes others see my daughter as a whole person. That’s worth it right there.
Hi there Sally — I’m a bit perplexed about being honest about pretending and then others somehow believing it and seeing your daughter as a whole person? But, that’s okay – perhaps others will relate. Thanks for sharing.
You offer such powerful insights into something I think we all do, not just parents and teachers of disabled kids. At times we exaggerate the positives out of reality in a bid to keep on going. a sort if day dreaming, wishful thinking even as we know it’s not true. How else can we bear the pain of life at times?
Hi Elisabeth – thanks for visiting… I agree – we do tell ourselves stories to get through things and it can be a necessary coping mechanism. I worked hard though to resist projecting my own anxieties onto my son, and I smelled a rat every time someone else tried to do it too! I often had to remind myself that these were my struggles, not Owen’s.
I linked to your blog today, to Parts 1 and 2 because I believe they add some interesting discussion to our lives as parents of children with disabilities.
Thanks Elizabeth! I always appreciate your participation :)
As I read between the conversation between Louise and Jen, I recount fun times spent with both your children that I know left others perplexed, but we loved it!
The time I took Owen to the Distillery District to go to the Deaf Culture Centre, I wanted to visit as I was taking some classes at school. We spent some time there, watching movies, played with the signing bear and read a book. The best part of our day, was walking along the cobble stone, lying in a ten thousand dollar bed (in some store that I found my friend asleep in) and sitting under the big sculpture trying to imagine what it was. We laughed a lot that day.
The time I took Ben to Centre Island to go swimming with a friend, he didn’t end up swimming and had a hard time until lunch. Our favourite part of the day, running through the sprinklers in the grass, jumping in the fountain (we got in trouble, it was funny) and believe it or not, waiting for wheel-trans by the big gate. Ben thought the trucks coming in and out, that would do 16 point turns was funny, we all did.
I see both sides of the coin. I don’t agree with pretending, but awards are great, if the true value of them mean something to the person. In both cases we learned, you can really have fun anywhere, you just have to find it. Owen got a big hug and cuddle award in the sun under that crazy sculpture and Ben got the award of getting pushed at high speeds through sprinklers (I made him push himself all day). I like awards to be hands on.
Hey Marjorie! Thanks for jumping in… Love the stories! I can totally picture you and Bubby causing a scene in the store.
Just want to clarify that by ‘cheerful pretend’ I’m not talking about having a good time, or generally being cheerful.
I’m talking about the desire of caregivers and parents to bestow upon the child some kind of award that validates them to others, or makes them seem less like someone with a disability. Or minimizes the disability because it makes people feel more comfortable. Fake artwork, ridiculous report cards… on another blog where I comment, a parent also pointed to facilitated communication as evidence of ‘pretend’.
Running through sprinklers and having a wonderful time together is awesome! I have no problem with that :)