I went to Boston. My step-son studies film in Boston. I love Boston. Here, I do not talk about autism. Autism is, perhaps, indirect — I am a mom of an autistic person looking at things a little differently. Maybe the way Adam looks at things has inspired me to look a little more closely. Here are my impressions of Boston:
Under A Boston Sky:
Boston Reflections:
Boston Form and Repetition:
I’ve been to London
I’ve been to France
(this is not about your underpants)
Yet there’s nothing better than rigorous dance
With arms flailing
Joy assailing
Down the river of happenstance
The dance ends
Begins again
Like sun and storms
Asunder
I’ve traveled near
I’ve traveled far
In clacking trains
And humming planes
A hope of something Other.
But home I always do return
to warmth like beacon fire;
cracking, hissing, fluttering,
This we all desire.
We live with misery and content,
yet the latter we do yearn,
this ordinary life cannot be bent,
for all it does is burn.
I took this photo a couple of days ago. The park where Adam frequented in summers, it is desolate and gray now with the promise of spring as the snow melts away. I went out on Sunday and began taking photos of that which I will miss when we move from our home. I admit, with so much loss, I can really be queen-of-the-mopers. I can walk around and feel the woe is me deep down in my bones. No, I don’t pull out the booze and talk about what’s wrong with the world. I don’t go that far. It doesn’t mean I’m a sad or depressed person. It just is what it is.
I know I’m not the only one. To deny your moping is just that: denial. The difference between a down-right serious depression and this, is that I think I can measure the space in between loss and happiness. In other words, by writing, painting, taking photographs, whatever, it creates an awareness so I do not become lost in it. I can feel both within the span of a day (no, that doesn’t mean I’m manic). I don’t feel that running away from my feelings of alone-ness will heal me or make things better. Instead, I take photos of it. When I need to dive in, I just do it.
A few months ago, I read that most women suffer from “bag lady syndrome.” It was in the Globe and Mail last fall as well and I remember the story well. Searching on the Internet, there are a deluge of stories on it. No matter how affluent and successful a woman is, she still worries she’s going to end up in the streets. So deep is this affliction, I decided to wallow right in because facing fears is the only way to to minimize them.
“Bag-lady syndrome plagues, puzzles and, in more extreme cases, paralyzes women who want to get a better grip on their financial lives, according to Olivia Mellan, the author of The Advisor’s Guide to Money Psychology and a Washington, D.C., therapist who specializes in money psychology. Lily Tomlin, Gloria Steinem, Shirley MacLaine and Katie Couric all admit to having a bag lady in their anxiety closet.” (MSN Business).
As I did this day of photography, I suddenly came across this bright yellow shopping cart in our neighbourhood park. What struck me is how bright yellow it was (I’ve got a bit of tweaking to do on this photo to bring that out). It’s owner, I imagine, must be some wonderful imaginative bag lady leaving it for a while to find food or objects, for it was not there at the beginning of my walk, but only here at the end of it. The cart is empty, sitting there, an entity waiting to be filled up.
Is that what we are? Just a bunch of numb people waiting to be filled up? As a woman now “on my own,” this is exactly what confronts me. It’s not that I haven’t created ventures and done and accomplished many things. It’s just that when you lose your partner in life, desolate feelings arise within. I am not trying to diminish the value of partnership here by suggesting that it is bad to have a partner in whom you trust to take over aspects of your relationship. Connection should fill us up. It is natural for partners to assume different roles. It is a fact that when your partner leaves or dies, life can be scary and bag lady fears can come rolling in. We have this fine line between being comfortable and confident in ourselves and appreciating even the fleeting reality of connection between people.
Lately, I have been replacing “Bag Lady Syndrome” with The Little Match Girl Syndrome. The story was written by Hans Christian Anderson. Do you remember her? The little girl sent out to sell matches? I bet many people born after 1970 don’t know her at all. With no shoes in the stark cold, she dared to light some of the matches she depended on to make income to keep her warm. In her desolate state, the world buzzing around but ignoring her, she crouches in a corner and begins to imagine a feast, the warmth of her grandmother, a lovely Christmas tree. Her imaginings bring her enormous happiness.
“She hastily struck a whole bunch of matches, because she did so long to keep her grandmother with her. The light of matches made it as bright as day. Grandmother had never looked so beautiful. She lifted the little girl up in her arms, and they soared in a halo of light and joy, far above the earth…”
Of course, by morning, the little match girl is found in that corner, frozen-to-death, passers by only making mere mention of it “she must have frozen-to-death,” they utter. On the last page, which is an illustration without words, the sky shines now two stars, which we imagine to be the little girl reunited with her grandmother.
It got me to thinking more about happiness. In this case, the little girl’s imaginings were necessary for survival. If I were starving, I might pretend to have a big feast if it would make me feel better. If you have access to a computer, I doubt you are one of those people freezing in the streets. You are probably dabbling through your day, in and out of your busy tasks, watching the stock market and drinking a cup of coffee perhaps intrigued by this notion of happiness. Who wouldn’t be?
So I lead to a question here: do you read your children the story of The Little Match Girl? Do you read it as some sort of pity story about poverty and how we have to help the poor? Or do you avoid the story because it contains too much pain? Or do you read it as a story of not only social responsibility but of happiness? What are we really teaching our children about happiness, pain and suffering?
It stuck me when Adam’s assistant picked up the book and read it to Adam (she did not know the story). As she was reading, she felt she had to censor it for Adam’s sake because it was “too sad.” This, a children’s tale! A Hans Christian Anderson tale! Never mind the Brother’s Grimm. I mean, these tales do not have proverbial happy endings. Happiness is not just an ending, its a means and an ending.
Nietzsche said “the measure of a society is how well it transforms pain and suffering into something worthwhile. Not how a society avoids pain and suffering — for Nietzsche, a deeply troubled man…knew that was impossible — but it transforms it.” (The Geography of Bliss)
Aristotle believed that how we pursue happiness matters more than the goal itself. “They are in fact, one and the same, means and ends. A virtuous life necessarily leads to a happy life.” (Ibid).
Perhaps there is something missing when we pursue happiness in things and avoid the pain, the struggle and the “failures” of life. It is missing when we suggest that a goal in autism, even is to make people “normal” or “indistinguishable” because, let’s face it, it will make many parents (not necessarily the autistic people in question) “happier.” If we think it will be easier, we believe it will make us happier.
Everything is tied in to our view of happiness and how we shape and live our lives and how we think we and other people should be. Instead of enjoying the journey, embracing the struggle as if it were a natural part of our existence and an intrinsic part of our overall happiness, we want to avoid it at all costs in favour of something over there — over the rainbow — something better (even if we don’t really know what that is).
Right now, my happiness is in writing, reading, taking photographs and thinking about life itself. It is in my early morning cups of coffee and the luxury (and necessity) of reflection. Happiness right now, is sublime. I suppose with all that life has brought me thus far, the good and the painful, I am not a person to run away. I don’t believe we find happiness in other people, except that connections with other people do bring me much joy. I believe happiness and imagination are so deeply entwined. We make our own happiness.
While these objects stand alone in a desolate landscape (about to turn into a spring), they are in and of themselves entirely beautiful. It brings me happiness to travel to the depths of my feelings about what’s happened in my life lately.
As the woman walks away down the well-known path to her, we know she will yet go someplace else.
Are you happy? Just think about how loaded a question that is. Just thinking about it makes me dizzy. The question leads to many others, like what will make me happy? Am I happy now? How do we measure happiness?
I’ve done what most people do upon a major life change: I’ve made lists. Wish lists, to do lists, travel lists — all in the name of happiness. Instead of a list of what makes me happy right here in the now, don’t we all tend to make lists of what will make us happy if only or when we… I plead guilty.
I know that books prescribing ways and means to be happy must be flying off the shelves in contrast to a threatening economic depression. I find the dichotomy quite revealing. Just yesterday, I bought more books on how to be happy right alongside Harvey Dent’s The Great Depression Ahead. What an irony! Yet is is a fact that books on how to be happy are popular in times of financial strife. As I must manage my own finances now in the face of divorce, I find myself swallowed by the deluge of material I feel I need to learn about financial markets — they don’t seem to be making anyone happy these days. (In fact, in his Washington Post article A Year of Living Gloomily, Weiner suggests we have a proclivity to live negatively). As an artist, a writer and a creative spirit, I feel sort of overwhelmed by the confusion out there among the very financial “experts” — everyone scurrying to be the next correct financial prophet. If too much information leads to stupidity, then we must certainly be on the right path.
Money just doesn’t seem to buy happiness outright. Research has shown that as soon as our needs our met, money alone cannot make us happy. British academic Avner Offner said that “affluence breeds impatience and impatience undermines well being.” Just think about all the inattention and information out there. I can’t remember when a person has simply paid complete and utter attention in a deep conversation with me. Minds are drifting in and out of blackberries, wants, what-must-I-do-next worries, and to-do lists.
So what is happiness, then? Is it an attitude — that happiness is not the destination, but the journey sort of thinking?
I’m enjoying my latest read by Eric Weiner, The Geography of Bliss.
Just halfway through in one sitting as of yesterday, my flu just easing enough to enable my eyes to focus on the printed word instead of sleeping through the day, I realize that this is all that’s been on my mind since I can remember. Is happiness a “pursuit” or is it an attitude? Is it right here in my lap, or snuggling in the crook of my arm at night before he falls asleep? Or is it “out there” somewhere yet unidentified?
As we stimulate an economy in order that we all remain happy (or as we try so hard to hold on to the happiness we equated with consumption), we might be amused yet confused at what Bhutan has prioritized in its government policy as Gross National Happiness: “In a nutshell, Gross National Happiness seeks to measure a nation’s progress not by its balance sheet but rather by the happiness — or unhappiness — of its people. It’s a concept that represents a profound shift from how we think about money and satisfaction and the obligation of a government to its people,” writes Weiner (p.56) The author then spots a hand-painted sign in a country that otherwise lacks billboards and advertising which reads,
When the last tree is cut,
When the last river is emptied,
When the last fish is caught,
Only then will Man realize that he can not eat money. (p.57)
Hmmm. I feel like putting that sign up on my door. What a great little mantra for a world gone mad — we Westerners who seem to have lost the meaning in our lives — and in a time when we face the reality that consumption leads down a road of despair with scarce enough resources to survive (if we keep along the same path say the environmentalists), let alone be happy.
How much do our expectations infringe upon our potential for happiness or mere contentment? I mean, I am content with a book in my hands that I enjoy reading. I am content watching a good movie. I can become ebullient when dancing, or sharing a deep and attentive conversation with another person. I think that’s it for me — a contentment and connection with a person or myself in a moment. I can be content with Adam just as he is. We are going to the art gallery today and we will simply enjoy each other’s company with no grand affair. I can be happy even when I am going through crisis with the mere realization that there are moments that make us happy within more difficult times, like the times I am going through right now. For me, even these simple revelations are the essence of happiness.
Weiner writes, “In America, high expectations are the engines that drive us, the gas in our tanks, the force behind our dreams and, by extension, our pursuit of happiness.” Just in that one word alone “pursuit” I am exhausted. It truly doesn’t make me happy — this race to find what makes us happy. I don’t believe that the grass is greener on the other side, as the saying goes. Something deep inside me has always told me that my happiness has to do with my outlook on life. It’s something that I always have to re-confront.
Weiner interviews Karma Ura, a part of the Bhutan government’s think tank. Karma (I like his name for I believe we reap what we sow), says, “My way of thinking is completely different [than an American's way of thinking]. I have no such mountains to scale; basically, I find that living itself is a struggle, and if I’m satisfied, if I have just done that, lived well, in the evening I sigh and say, ‘it was okay….’ Even if you have achieved great things, it is sort of a theatre playing in your mind. You think it so important, but actually you have not made such a difference to anyone’s life…We like to think we really made a difference. Okay in the week’s scale it may have been interesting. Take another forty years, I’m not so sure. Take three generations, and you will be forgotten without a trace.” (p. 65)
Like Karma, I think about death every day. Like him, I find it “sanitizing,” not morose. I think about it to remind me of the pleasures and gifts of today. I find that the work of being happy much too exhausting. Rather, the realization of what I have today, seems to bring me unadulterated contentment.
I hope your day brings you contentment, even if it’s just washing the dishes, walking outside, reading a book or…going to the art gallery. Today, I’m not Elizabeth Gilbert of Eat Pray Love, or Eric Weiner of The Geography of Bliss — searching somewhere out there to find happiness. I am living as if the life and the things I go through are contributing to my happiness. The plain old subtle day-to-day stuff that is actually, quite special depending upon one’s view of things. My life is about Adam these days, navigating a difficult time, and realizing what makes me happy, or at least content, right here at home. The geographies I navigate are living inside not just me, but in all of us. We don’t need to really travel that far.
I want you to watch this video presentation by Will Wright: “Will Wright Makes Toys That Make Worlds. Take a few minutes to watch before reading the rest of this post. Wright creates video games that enable people to create worlds. He praises his Montessori school for the method in which he learned — which is a process of discovery — and uses the Montessori model in his games.
Adam goes to a Montessori school. At first, I was told that “autistic kids shouldn’t go to a Montessori school because it has little social interaction opportunities.” Then, there was a Montessori school built here in Toronto that used ABA therapy — totally antithetical to the Montessori process. Needless to say, I never sent Adam there and I believe the school is out of business. The classic Montessori school has been a blessing in our lives and a boon to Adam.
Adam has more friends in this Inclusive school than ever. He is into the creation of his own creatures and has launched into a realm of pretend play that didn’t obviously exist for him when he was three. I say obviously because learning for Adam has taken a different path — no less important or valuable than traditional methods. Obviously might replace the world “typically.”
It is here that I will speak out against Applied Behavioural Interventions for autistic children. My child is barely verbal, yet he’s social. He loves pretend play which he didn’t “display” when he was younger. I cringe at the attempts of one former speech pathologist who made Adam “feed the baby,” each and every single day in preschool, but completely ignored the way he played on his own. I mean, how does that expand the mind? Adam seemed so angry with her. He was probably thinking, “here comes that boring lady who wants me to feed the baby every day when I’ve got better things to do.” Today, I watch Adam progress and evolve, watching others and wanting to learn so badly. This can only come from within him. The environments we expose our children either nurture or squash the desire.
The bottom line is this: autistic people learn. They discover. They have their own path. I want this game for Adam. It has no set conclusion. It is open ended. It enables him to keep discovering, as does his wonderful school. He can play this with any member of his family or his friends.
While Adam does get lessons in structure, sequencing, motor planning and much much more, there has to be a balance to let children be and discover. People do not fit into little boxes. If we put them there, we may never understand their true potential.
Be still my heart. It is Valentine’s Day, or as I say to my son Adam, who is for the first time ever, traveling without me with my soon-to-be ex-husband, “Happy Heart Day.” But can the heart always be “happy?”
I say it to him because he is young. He understands what happy is, and enjoys the “happy face.” He loves toys with faces and makes faces on his plate with his food. It is his fascination – the face, that is. Simon Baron Cohen ought to check out my son’s sheer love of the face.
I refer to Adam often as my heart. We parents refer to having babies as our “hearts walking about the earth.” This cannot be more true. It is the greatest gift and the greatest pain. I believe all great gifts have this enormous duplicitous truth.
Be still my heart as Adam looks out in this picture his dad sent me as he peers our at the ocean in mommy’s old reading spot. I am happy that he’s happy, and of course sad I am not there. Being alone without my son for the first time is something to get used to.
Heart Day is bittersweet. We can be struck by cupid’s arrow that symbol for being caught by elated love, but it’s inevitably going to bleed. We can have expansive hearts for our children, and broken hearts from our lovers or friends who leave us or break a sacred trust. That which we deem sacred is at the highest risk, perhaps because we put it way too high up on a wobbly pedestal.
The heart is a marvelous thing. It is that one organ that keeps us moving that pump pump thumps with the vibrancy of life, and yet, we feel it. It can fly, it can suffer extreme pain. There is a lot of soul that pumps within that engine. We feel our hearts, quite literally, in every aspect of our emotional lives. If we sit back and just feel in the moment, that physical feeling that is emotion comes from two very important places – the stomach and the heart.
“I cant’ stomach it,” is a phase for something we cannot emotionally handle or that which we find disgusting. When people are upset, they often cannot eat as the stomach clenches with pain or worry.
But today we celebrate love with the heart. Love which is our lifeblood, our reason for being. We are programmed to love. I am most fortunate to have a son who I love unconditionally. I feel I have experienced life’s greatest blessing to know such love.
My heart is out there by the ocean, but I take solace in knowing that he’s happy. I could cry at the commercialized hearts in store windows and mourn the loss of coupledom as I go out and about today on my own. I could focus on only those lovers holding hands today and ignore the other people, just like me, who want to just get through another day of plastic and glittery commercialized happiness.
Naaah. It doesn’t work like that. Of course, going out today may be treacherous, but my heart is Adam and I will cherish that. My heart wants to be open, no matter what happens. Gentle am I, and I will be, with myself; a lovely, openhearted person who will celebrate myself and be open for what may or may not come.
At my age, it’s quite a revelation to love oneself, especially after the heart has been hurt. So imperfect am I, that I will celebrate my idiosyncrasies and the fact that I have given so much and will give that space and love to myself. Celebrate, I will, the dream I have fulfilled in having a wonderful and affable child who will grow up, I know, to be a generous man with his own heart. Understand, I will reflect, that the heart only grows bigger with scar tissue. Happy I will be, with the flow of this life I live and accept a new relationship with Adam’s father. Content, I am, in all of life’s ordinary moments.
Today I will take simple pleasures by recognizing life’s important blessings and lessons. And if for one moment, I feel sorry for myself because some silly Hallmark symbol I see out there delivers me the message that I’m not “complete” without another, well, at that point I can guffaw, maybe giggle with tears, and just remember how complete and lucky I already am.
____
Postscript: After writing this post, Adam sent me a “Happy Heart.” 
Thank you to those who answered my list of questions regarding single parenting of disabled children (specific focus on autism to be determined). I am interested in both the female and male perspectives. If you haven’t already signed up, please email me at esteewolfond@mac.com.
I just received some feedback about my new website and apparently it is difficult to sign in and make comments. If you do have any feedback, please let me know and we’ll see if we can make it easier.
From Ad Busters:
Loners
“The future is always difficult to quantify, but tomorrow comes with at least one guarantee: it will be lonely. The number of single-person households across the globe is growing at an alarming rate. Struggling with feelings of lonliness and isolation, more and more people are turning to online dating and social networking sites to try and muster up some companionship. Meanwhile, divorce rates are at an all-time high.”
Well heck, that explains three posts in one day. Or, if we’re really smart, we can recognize a great economic opportunity when we see it (seeing as how all of you biz guys are freaking out, why don’t you wake up a little bit). Social entrepreneurship and networking online is KING. I’m not condoning those divorce rates. It might be interesting to examine any correlation between online connecting, the Internet and divorce rates, if any. It’s interesting as connection is at an all time Internet high, we are disconnecting from each other moreso in our personal lives. In my neighbourhood anyway, neighbours hardly come out and say hello to each other (except for my one favourite neighbour). No, instead, we connect through Facebook when we are only meters away from each other!
Yet, in the disability community knew it for a long time — the blessing of at least connecting on the Internet. I mean, as the world is in “crisis” we see many more sprouting of individuals and organizations trying to make this world a truly better place. Thank goodness. As a writer and an only child, I’ve had little problem with being alone, but connecting is a necessity. I hardly think we are alone. I see thousands of you connecting on Facebook at at The Autism Acceptance Project. While it may just be you and I in front of our screens right now, we are at least together in our alone-ness. All of these social connection tools are a way to connect with each other in an otherwise cruel and dangerous world. How do we get out from behind our computer screens and connect in person?
We do it often the autism community and many other communities with a cause do it too. We write, we are active and we meet up at retreats and conferences. Just check out Autism Hub, all the autism activist groups, the forums, the chat rooms. I think the power of the Internet to connect us in our causes and interests has been a blessing in this confused world at the moment. It will be okay. We will all find our way.
Ode to the power of WWW.
Now go say hi to your neighbour.
If you read my post on How’s the Weather a couple of weeks ago about small talk, well, I have to admit, I’m obsessed with weather. I get really excited at oncoming storms, weather warnings and today, I can report that Canada is in a deep freeze. Our warnings today across most of Canada are wind-chill warnings up to minus fifty! Brrrr.
Toronto in a Deep Freeze
Here’s a picture of Toronto from Adam’s grandfather. It shows how life can be positively cryogenic. I’m certainly frozen as I huddle in the home my husband and I built; from where Adam and I will soon move away. It reminds me of disability history and cryogenics — how we are really frozen in time (I’m writing a paper on that, and will post it).
Yet, time and life keeps moving at the same time when things don’t change much at all…what an irony.
Please don’t forget about my single mother of disabled children study and thanks to those of you who have responded. I guess it’s cold here in Canada, but things are still moving along.
“Moving on, is a simple thing, what it leaves behind is hard.” –Dave Mustaine
Here’s a video and song that warmed my heart on a freezing cold day:
DoC of Autism Street. made me cry this morning…and okay, blush too….
I can’t thank you enough for your kind words, James. Yesterday, I got a little cheeky on Neurodiversity.com as Kathleen wrote a compelling title to her exceptional post “Who Wants To Be A Millionaire.” Of course, Kathleen’s content is NEVER cheeky (well, not at least without a ton of intelligent research behind it). I’ve met Kathleen — she is sweet, smart, thorough and I trust her judgement. Kathleen cares about people. I can attest to that.
James, you shocked me with your post this morning over that silly comment of mine. But thank you. I will ditto the plug of Jame’s blog here. I’ve heard James speak in San Diego, and let me tell you, he is of professional speaker calibre (I really think you have another career there, James).
Thank you to so many of you who have reached out to me. You really don’t know what it means as I sit in my Toronto home office with gray skies and uncertainty and try to make the best out of it all.
Estee
Should this blog only discuss autism? I will tell you, I can’t just focus on that. Soon, the old Joy of Autism Blog (down-loadable also by clicking on the PDF file in the right margin) will be published and you will be able to read eight hundred pages about our world as it relates to our lives with autism. Some posts are very specific; others meander for your consideration.
I promise, however, to complete three projects this year specifically regarding that are specific to disability and autism:
1. I will be completing a paper on single parents of disabled children as it relates to stress, coping, management and quality of life;
2. I will be writing a piece on investment and financial planning for Canadian families with and for disabled people;
3. I will continue the Inclusion Initiative with TAAProject (which in and of itself entails a few projects)
4. I will be enhancing Adam’s curriculum as usual (that’s the major part of my daily life).
In addition to my studies at the Critical Disability Studies Department at York U, living and planning for Adam’s life and writing about all that, and now with a specific interest on managing life and our future as a single-parent family, I have this urgent need to muse about our world, perhaps oh so generally that it makes some of you crazy. But hey, everything is connected.
As I read The National Post this morning, I remind myself why it’s good not to read the papers everyday, but also naïve not to. Here in Toronto, we have Palestinians protesting on Bloor Street the crisis in Gaza — police on horses are eerily positioned way too close to home. In the comments section of the post Mark Silverberg from Toronto eloquently writes on how Israel is “losing the PR war” — referencing an article by Jeet Heer, Silverberg writes, “According to figures on the Israel Ministry of Foreign Affairs Website, 1,176 Israelis have been murdered in terrorist and missile attacks since 2000, including 140 suicide bombings killing 543 individuals – many of these attacks perpetrated by Hamas. Quite impressive achievements by a group Mr. Heer refers to as ‘a raggedy half-starved guerrilla force whose homemade missiles are usually as dangerous as firecrackers.’” Silverberg sure has a point here. The media wars influence our thinking in grossly unfair ways. I think of a quote by Golda Meir herself that sends chills up my spine when I think of the media wars on how they influence perception and how all life is truly precious. She said, “We can forgive the Arabs for killing our children. We cannot forgive them for forcing us to kill their children. We will only have peace with the Arabs when the love their children more than they hate us.” I hate reinforcing monolithic ideas — that all Arabs don’t love their children — I would not let that stereotype go on for the sake of my Arab friends! But there is a wave of terrorism that uses children and families as human shields. That’s the kind of use that we have to focus on — not stereotyping an entire people, but focusing on the groups that simply do not accept the right for all of us to live in peace. Meir’s quote may rub some of you the wrong way, but it also rings of tremendous conscience and responsibility in a complicated situation.
As I’ve said numerous times in my presentations, there is enough death-talk in this world — even among many autism “advocates.” It’s time for more life talk.
Let me go on about what I see in the paper: an article on epigenics on the front page. Sounds nice that we might in utero be able to detect if human beings will develop cancer later in life (the article carefully leaves out people with disabilities, but of course, read between the lines, my friends). I think of my ovarian cancer this year that I caught, thankfully, early. So, if it was detected in my mother’s womb, might my life have also been prevented?? Are we going to cure it in utero? “It’s about choice,” says the article. Indeed, I’m an advocate for choice. Yet, there is a point when social pressure is so strong when choice ceases to be a choice.
Let’s go to another page. This one really effects me. You see, when my divorce becomes final, I had this idea in my head that I would travel to India. It’s the trip of a lifetime for me. Also front page that continues on the back: all the missing Canadians. Never mind the recent terrorist attacks in Mumbai this past year. That really put a damper on my willingness to travel. But if that didn’t quite do it, this article did called, Searching for Ani, and Anatomy of the Hunt…. “Every year hundreds of Canadians go missing in other parts of the world. Last year alone, Foreign Affairs opened 413 missing persons files….”
So much for my desire to go to India with a sweet wonderful autistic son at home who really needs his mother. So you don’t think the news has much to do about autism in what should be a strictly autism blog? I beg to differ. I don’t go out much since my separation. I am careful about who will be in our lives. I am careful about everything and yet, I am able to connect with thousands of you (2000 to be exact) through The Autism Acceptance Project alone – never mind blogs and Facebook. The world is rough out there, and so here we are trying to connect with each other on the Web. In this world that seems to be falling apart at the moment, we must never give up connecting. The enormously wonderful and potentially dangerous power of the web! We have a choice on how to manage this world. We have a choice in the way we report the news and the words we use. We can also keep speaking up against stereotypes if we are to move forward.
I reiterate the words of recently deceased Canadian writer June Callwood on page A10 of The National Post, where the winning design for a park in her honour is proposed to be built between Fort York and the Waterfront. “Submitted by the firm gh3, it literally articulates a quote the author and journalist gave in her last interview before her death. A voice wave of ‘I believe in kindness,’ will be translated into a ‘sinewy path that runs north and south through the clearings in an urban forest that will be planted with native Canadian tress….”
So you don’t think there’s any connection between autism, the world, the media, and the way we think about things and the world we forge for our children? It’s ALL I can think about when I read the paper: how do we think about things, each other, and where are we headed?
Thank goodness all that bad news was punctuated with the most important quote of all:
I believe in kindness.
I hope the sentiment never gets lost in the propaganda.
Thanks, Bev, from Asperger’s Square 8 for writing this post, CAGES. She uses my blog as an example where she writes about joy and autism:
Joy
From The Joy of Autism blog: “Finding joy doesn’t come without struggle.” Estee gets a lot of flak from “autism advocates” for the way she supports autistic people. Sometimes I wonder if the critics read much beyond the blog’s title. In addition to joy, Estee writes about pain, challenges, anger, disappointment and hope, inspiration and grief. Her core message is one of respect for all people. But even if she did only write about things that made her happy, or if I only wrote about parrots and squares, so what? Celebrating life is not wrong. When situations are difficult, it becomes ever more necessary to find the parts worthy of celebration. It shouldn’t need to be said that finding joy in autism doesn’t mean that is all one finds. Besides, the internet could hold a few hundred blogs about joy and autism without making a dent in the negative things that get said.
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If only people took the time to listen, then we would really understand one another. Thanks again, Bev. Because of what you wrote, let me share a little joy from our recent trip to Mexico:
Now what better joy is this?
I was in hell with Dante. Yes, my guide was named Dante. He is an anthropologist, studying Mayan culture. Rio Secreto was only discovered this past year. The Mayans believed in both the upper and under worlds. Two days ago, I visited the tallest Mayan temple, Coba and went to visit the gods of the upper world. In this case, apparently Coba is to honour the honey or bee god — there are about 13 gods of this upper world. I climbed at a fast pace up the steep steps and when I reached the top, a bee insisted on swarming around me despite my attempted swats. Was that a sign?? Was I being greeted by the bee god or being held off?? I’d prefer to believe that the little bee was greeting me a top one of the most spectacular and breathtaking views I’ve ever encountered. I wanted to linger, write on top by the temple, but time insisted that unless I wanted to be sleeping there, I´d better climb down those same steep steps and keep moving.
I walked through the jungle and took pictures of the roads the Mayan´s built — the longest was 62 miles leading from Coba to Chichen Itza. The roads were elevated and were made from crushed sea shells, honey and syrup to keep the mixture together. White, they were built to glow under the moon and the stars so trade could still take place at night.
The following day, I decided to stare hell in the face. It’s the only way to deal with fear, I thought, so what the hell? Adam came with me on this tour and I will have a couple of neat pictures to post when I return home. Dante was his buddy, guiding him through the most complicated and interesting caves I´d ever seen. Seventy feet below the surface we decended, and we traversed only one kilometer in a system they have discovered now to be about twelve miles. Yet, there’s always more to discover. Adam made it half way through and went back with a friend and another guide back outside. It was a VERY long tour of the dark caves, and I was impressed he had lasted so long. The Mayans didn´t traverse to these depths. Why would you want to be in hell, right? Instead, they made offerings to the hell-gods so they would not come out. Yet down there with the bats, I saw what we do as a people and how we really are interconnected. Roots from trees descend through the limestone, looking for water. A cigarette you drop on the ground, makes its way down and then becomes part of the caves, or if you want to say, our eco system. Calcium deposits in the water that take time to form, are disrupted instantly by a touch or oil from our skin. We don´t recognize our impact on disturbing natural eco systems until we see with our own eyes.
So I was in a Mayan hell, and there was nothing to fear but ourselves. I climbed with my group back to the surface after some time, and the guide told us to turn our hands flat to the side (as if you were pointing with your entire hand). Our fingers touched in a circle. Then, he told us to curve our hands and put our thumbs on top of one another, the circle still formed. And then, he moved our arms in so that are hands, of all different colours, turned in to make a tighter circle, still. Then he said, “there, we are all one.”
It is ironically a similar shape to The Autism Acceptance Project´s logo, but this was more like the look of a mandala. The light was beckoning us to rise out of the hole. I was hesitant. This hell was more beautiful than anything I´ve ever seen.
Weather pulls us together. Ever notice? Here in Mexico, we all flock to lie under the Mayan sun, escaping the cold and gray of the North. We don´t talk much down here. There are lots of books, booze and the sound of crashing waves.
Back home, I turn on the Weather Network. Who would have ever guessed it would be yet another 24/7 entertainment channel? Just an aside, I get personally excited with Weather Warnings and tornado watches. I start Blackberry-ing friends in cottage country to take cover when the weather threatens up there.
I like snowstorms that leave me stranded inside –or they are supposed to leave us stranded. It´s really an invitation for me to take a long walk with hard snow scratching my face, having to lift my legs so high just to take one step. I do it because no one else does. It´s just me and mother-nature out there.
Then, there are more serious weather matters. The Tsunami, Hurricane Katrina, among other natural disasters, and we all pull together. We know that if it was us, it would be (or be more) catastrophic. Compassion seems only to emerge when we can picture ourselves in other people´s shoes and situations. I’m not going to talk about whether or not that´s problematic in and of itself as we tend to ignore the rest of the world unless something happens that might threaten our own existence or security. When it seems to hit closer to home, boy do we start to pull together.
Yet, that´s how it tends to go as we all become preoccupied with our own lives and believe that everything will stay the same. I know that things do not stay the same. I know it the hard way. And no one asks, really how I am. Instead, it´s easier to ask, ´”how´s the weather?” Forget about, “how are you?”
You see, people really do not want to know. Maybe it´s just too scary to know. Maybe people worry about getting into a whole story they do not want to hear because it might be too boring, painful, or whatever. Everyone has their own lives to worry about, right? Or, might we all expand ourselves by giving of ourselves, by taking time to ask that very question?
Yet, maybe, just maybe, the weather is just a safe segue to get to know each other better, or so I’d l ike to think. So, I will tell you that the weather is great down here in Mexico and I’m about to climb a Mayan Temple named Coba. Please let me know if you are stranded at an airport due to the weather, or if the gray and cold is getting you down.
I really do want to know.
ESTÉE KLAR
TORONTO, ONTARIO, CANADA
Writer/Curator/Founder of The Autism Acceptance Project. Lecturer on autism & the media, and parenting. Graduate student Critical Disability Studies, York University. I like to write about our journey, musings, attitudes towards autism.
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