How much of your life have you spent (wasted?) trying to be normal? I constructed my life around the mythical land of Normal, but someone has different plans for me. Last year we were told our son wasn't 'normal', so now we're packing up old prejudices, our preconceived notions and unrealistic expectations, and we're moving out of Normal to a different... possibly better neighbourhood.

You too will find yourself, no matter who you are, joining me in this place where the only true measure of normal is which kind of weird you are. This blog will explore a journey most of us will take at some point: letting go of preconceptions about ‘normal’, peeling our fingers off the image we had of what our lives ‘should’ look like, and having the courage to re-imagine the piece of time we are given in this world.

You are now leaving Normal.

"A nice place to visit, but I wouldn't want to live there!"

Monday, April 18, 2011

April Archives: Why My Child Will Be A Mouseketeer When Pigs Fly


Oh how do I detest thee Disney, let me count the ways...


As a woman who’s grown up in North America during the second half of the Disney Dynasty, I have a love-hate relationship with this megalithic manufacturer of cultural expectations and disappointments. I could never relate to the Princess pack as a small child. But oh… how I longed to.

Everything is so simple in the Land of Disney. And my childhood could have used a dose of simple. But it never came… I never went to a prom (didn’t really have those in rural Canada), never wore a frilly dress, never got swept off my feet by a handsome prince. I’m less bitter than I am… perplexed. How is it that I actually have a sense of inadequacy because of this? Despite a University degree, a great career, loving husband, magical kids, comfortable lifestyle... How is it possible that I could still, as an intelligent woman, allow myself to feel this way, all on account of a company who’s mascot is a rather tiresome cartoon mouse?

When I think about Disney, I think about unattainable standards, narrowly defined roles, reinforced stereotypes, and generations destined for disappointment. I think about a boat that never rocks, an establishment never challenged. Sure, if you are in the 2% of the population who fits all the requirements to actually be a Disney Princess, I suppose they don't seem so evil. But as harmless as an entertainment company may seem, I believe Disney’s powerful reach extends right to the very heart of our culture. Moreover, I believe it is particularly devastating to a culture that seeks a wide circle of acceptance for neurodiversity.

So what does all this have to do with kids who are markedly different than the ‘norm’ you ask? Well, this thought process all began after I read a post on a discussion group a month or so ago. It was a mother desperately pleading for reasons why her life had gone so wrong, lamenting why she had been given an Autistic child instead of a ‘normal’ one. Her comments paraphrased: ‘I was supposed to be driving my kids to little league or Boy Scouts, instead I’m driving all over to therapy appointments. It wasn’t supposed to be this way.’

Now the problem for me as I read the post was two-fold. First, her child’s diagnosis was not new. It had been in place for several years, so it wasn't an initial raw reaction that was being shared. Second, her child was not far into the spectrum in terms of what is widely referred to as ‘severity’. So at first, I was internally quite indignant at her complaints that destiny had let her down. I wanted to give her a good shake and say this is your destiny! This child is a beautiful soul and you were meant to be his mother; this miracle we call life is about so much more than Little League or Boy Scouts!

And then I did that thing we moms sometimes get brave enough to do… I went to that sometimes dark corner of my spirit where I keep The Truth safely guarded. I opened my mind to how she was feeling, and while I cannot relate to her sentiments at this point in my journey… I allowed myself to understand the roots of her disappointment. And those roots are showing - in places like Disney Land. Now I’m no conspiracy theorist, and I’m not being literal in my blame of the Disney behemoth. But I am being real. Disney is the embodiment of a culture that promulgates standards of ‘normal’ and ‘perfect’ that are completely unattainable for that woman’s autistic child, a culture that so narrowly defined her role as “mother” based on Little League games and Boy Scout meetings, that set her up to envision a life that was based on someone else’s stereotype, and now – the inevitable result: lasting disappointment.

I emphasize lasting because I can’t really imagine any parent not feeling some measure of disappointment when they first receive news of a significant developmental diagnosis. It’s a very specific brand of ‘disappointment’, unique to parenthood. And if we are honest with ourselves, if I am brave enough to share a little of that Truth we all keep somewhere deep inside, I think we need to admit that it comes from expectations which have nothing to do with who our child is, and everything to do with who we envisioned they would be.

Despite our best intentions to love unconditionally from the moment of our child’s conception… we are products of a culture that values princesses and knights in shining armor, Mileys and Mouseketeers. And so, it becomes almost impossible to remain completely untouched by the Disney Effect. Disney, who takes the naturally sweet beauty of human diversity and, deeming it unpalatable, soaks it in artificial colours and flavours until everyone looks like the same brand of lollipop. I like Licorice Allsorts – where are all the Licorice Allsorts??? Would they hire an autistic Mouseketeer? Are stimming and perseverations welcome in the Mickey Mouse Clubhouse? Is Disney a cultural icon that I can imagine embracing and reflecting publicly my son’s neurodiversity? I think Porky Pigs will fly before we see that day.

And so having come to terms with my inner Truth about the cultural expectations I held for my son, and how they had everything to do with my own inadequacies as a mother, and nothing whatsoever to do with his as a child… I return to the mother who was drowning in a lake of lasting disappointments. Allowing that otherwise fleeting sense of disappointment to persevere, to persist, to fester? That’s not the kind of ride I want to spend my life on. That’s where I get off the perpetual merry-go-round of "what ifs" and "why me’s” and head straight for the roller coaster of acceptance, advocacy, passion, and peace.

And maybe, just maybe... if an obnoxious little cartoon rodent can net $35 Billion, then perhaps flying pigs are not such a lost cause after all.

10 comments:

  1. I love you, Caitlin Wray, and I hope so much that we meet one day.

    Seriously, you operate so far below the surface, and yet so insightfully and so intelligently... you keep the bar high.

    As an Irish girl in Australia, I always liked Donald Duck better. Far less chirpy, far more socially uncomfortable.

    Wonder how I ended up with a beautiful autistic child?!

    :)

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  2. Maybe this is why so many of us like Shrek so much! :D

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  3. I had to smile at this one, because despite my best efforts, my 4 year-old Aspie is a pink princess. As such (and because grandparents live in FL) we have made the pilgrimage to Disney a few times and there is nowhere my girl's quirks have been better accepted. We had breakfast with the princesses, and they let her touch their hair, faces, and clothes with a smile on their faces. If only the outside world was as understanding, and had as many allergy-safe options! I could live in the Disney bubble.

    That aside, I agree wholeheartedly with your sentiments. There are no guarantees of that perfect life for anyone, and the families I know who appear to have it don't always seem to be happy anyway. Life can be disenchanting if you don't appreciate what you do have. :-)

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  4. Valerie - Thank you :) I too hope we can meet one day! Shame we are about as far apart geographically as two people can be on this planet!

    Jat - hadn't really thought of that but yes, I think there is a bit of the perfection-rejection in the Shrek phenomenon!

    Spectrummymummy - we've never been but my boys will make me go in the next few years I'm sure. I have no doubt that my son's status as "special needs" will be embraced there. But my issue is that they can't find an autistic peer held up by Disney as a role model - and that's the brand of genuine acceptance that I'm looking for.

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  5. They got sooo close with this last princess, if only they'd stretched a little further: http://spectrummymummy.wordpress.com/2011/04/12/tangled/

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  6. We'll have to rent that one, thanks!

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  7. Oh, what a wonderful post!

    As a parent, I've been keenly aware, for a long time, of the divide between my previous dreams and my present reality. I think that there is always disillusionment in parenting; no life, no dream ever turns out as planned. For parents of special needs kids, the division between dreams and reality is so much broader, and the divide so much deeper, and I understand that.

    But as you say, it's all about the pictures we carry in our heads about who were "supposed" to be, who our children were "supposed" to be, and what our lives were "supposed" to be. It's all about "if only" instead of "what is." And, having lived a life filled with a great many disappointments, I can attest to the fact that living life to the full every day, with exactly "what is," is the only road to real happiness. All the difficulties of my life have made me who I am, have strengthened me, and have made me appreciate everything I have so much more than if I'd actually gotten all that I once wanted.

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  8. Let me begin by saying I understand your point. However, I disagree with your sweeping, generalizations of the situation. To the point where I am actually a bit mad myself.

    I have four beautiful and wonderful sons. My oldest is OCD, my second has SPD, my third is autistic, and my fourth is neurotypical. I, too, like that mother, sometimes get overwhelmed with the “this isn’t what I signed up for” blues. Sometimes, I too, like that other mother, need to vent, to people who might hopefully understand those dark moments. And I do hope they understand and not stand in judgment. Aren’t we judged enough for having children that don’t fit the mold, and may not have their differences noticeable enough? Was this other mother’s child not on the spectrum enough for you? Was she not all my life is absolutely positively perfect enough for you?

    I have news for you. No one’s life is perfect, no matter how much they accept it. Sometimes people do sit back after a rough day (or week, or month) sit back and wish things may have been different. I get down when we are beyond broke despite making a “good income” because it all goes to therapy. Sometimes when the days are rough because there just isn’t enough sensory input in the world, I am beyond exhausted and can’t take another minute. Sometimes I just wish life was a bit easier. That doesn’t mean I don’t accept my children. That I don’t love them. That I won’t keep giving them my all. It does mean that I might reach out to people who KNOW where I am in my dark moments and will hopefully understand what I am going through. Because, let’s face it, my friends with “perfect” children, don’t and won’t understand. It’s not that they can’t offer empathy, it’s they can’t offer understanding.

    You could take a snapshot and decide it is lasting, but you don’t know that. You don’t know that other mother. You have stood in the same chair, judging others you don’t know, that many of us with special needs children, that might not be noticeably special needs, complain mothers of neurotypical children do to us. Shame on you!

    As far as your Disney analogy goes, that is horrible too. We love Disney. Not only because I did grow up with that mouse, but because they bend over backwards to accommodate my children’s dining needs—making food on the fly that isn’t anywhere near on the menu that meets their sensory needs and food allergies, and all without any extra charge. Because Disney gives us a way to wait in lines (shorter) that isn’t in the crowds that accommodate their needs. Because the characters get only as close as we want, and not any closer. Because Disney bends over backwards to make sure we have the resort room we need without any outside problems. Disney World is the one place we can vacation that not only accepts our children, but embraces them wholeheartedly. I have no doubt that Disney would have an autistic “role model”—if that is what you call princesses or cartoon characters.

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  9. Anonymous, thank you for your thoughts - I understand them. But I think if you take a day to reflect, and come back and re-read the post, you will see that I did catch myself in judgement and intentionally stopped myself - that was a key point of the post - that I was going to judge the mother but instead realized she - like all of us - are products of a culture that holds us and our children up to unatainable standards of perfection.

    It is that culture, as embodied by the Disney phenomenon, that sets us up for failure when our child is diagnosed as significantly different. In no way do I feel that our culture of perfection is the ONLY reason we are disappointed - there are many reasons, and many struggles and very real challenges. But lamenting the life you "will never have" - in an ongoing manner - is not the way to cope and flourish with an autistic child. I stand by that assertion.

    I know her words were just a snapshot, and I am not judging her on that snapshot - I am inspired by her words to form my own ideas on a subject. That is part of a writer's process. I was pushed into this chain of thoughts on Disney and culture, by reading HER thoughts, and in many cases this is the process by which we grow and learn.

    As far as your feelings on Disney as a place to vacation - that's great! But I still stand by my feelings on how they have shaped north american culture in a direction I personally find less than enriching. Building an empire on empty stereotypes and pretty princesses who live solely for the purpose of finding a prince - their massive cultural influence is less than welcoming for our awkward, socially challenged, OCD driven, tourettes-affected children, when applied broadly in the Real World. And as for the role model issue, you can ask just about any little girl on the continent if she wants to be a Disney princess - I think you know what they'll say.

    When I wrote this post (a year ago) I knew it would likely offend some people. I decided it was still a post worth writing, and worth sharing. I do appreciate your feedback, and your perspective.

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