My View of Boston

Filed Under (Uncategorized) by Estee on 23-03-2009

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:

Read the rest of this entry »

Spring Has Sprung

Filed Under (Adam, Development) by Estee on 16-03-2009

If you live in Toronto (or any part of Canada for that matter), it is so amazing to be outside again. Here in the city during the cold winter, we rely on cars, not snowshoes, to get around. Sad, I think, for we would be outside taking advantage of winter a lot more if city snow didn’t turn gray or melt with salt. City winters are wicked.

Nevertheless, spring has sprung. Or at least it’s about to. Adam and I are out walking, taking photos, and he’s now beginning to have his first “conversations.” He uses that word now too. He tries very hard on the telephone and afterwords the word “conversation” springs forth with ferocity from his mouth. He has become outgoing, say his teachers, and he speaks louder too.

The other day, he looked at me intently and asked for a dog. “Black,” he said forcefully. When Adam is sure about something, I can be sure he’s sure. I couldn’t help but feel a wave of guilt, for when recent events transpired, I got rid of the dog in order to resettle. I just didn’t want to leave the dog alone. So Adam is remembering his dog.

“Kiki,” he said again loudly, turning to look me in the eye.

“You can see Kiki,” I said reassuringly. Kiki is now living with friends just around the corner. Just when I thought (even though I should know better) that Adam wasn’t so keen on having his big Goldendoodle pooping and throwing up around the house, I was proven wrong. (I guess Adam doesn’t remember that part).

Now that we will be moving in the summer, a dog might, sooner or later, be imminent. A smaller dog, perhaps. That is, if he keeps asking for one.

This Ordinary Life

Filed Under (Uncategorized) by Estee on 15-03-2009

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.

Judging a Book By Its Cover

Filed Under (Activism, Autism and The Media, Critical Disability Studies) by Estee on 11-03-2009

When a friend alerted me to this book by Michael Allen, I Wish My Kids Had Cancer, I had to write this post. I have to say to Allen: are you kidding? Are the publishers of this book kidding? Where has all the human decency gone? If anything goes when selling a book, a remedy, a product, what does this say of us who permit it? How far does freedom go before crossing important boundaries that we just should not cross?

I can say that I’ve witnessed a few remarkably hypocritical things blowing around me the past few months that makes me question human dignity and grace, but this is ridiculous. No parent of any child, let alone special needs child should let such a book go on sale without outrage. To me, this title is no different than to suggest how horrible it would be to raise a black child in a racist world. To suggest that the child would be better off having cancer is just insane.

My mother has had cancer twice. Cancer runs in my family. I can tell you after early stage ovarian cancer last year, that the very thought of the worst (before my official diagnosis’ and surgeries which have now rendered me fine), made last year one of the most horrifying years of my life. The thought of becoming seriously ill or dying before your time when one has a child to raise is the most scary experience I’ve ever had. I’m sure it would absolutely be worse to watch my own child go through cancer.

Speak out. Speak now, or forever hold your peace. One does not compare having an autistic child to cancer. I don’t care how tough it is.

Tough it out.

Happiness is not always an ending

Filed Under (Uncategorized) by Estee on 10-03-2009

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.

Gross National Happiness

Filed Under (Uncategorized) by Estee on 07-03-2009

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.

On Desperation

Filed Under (Activism) by Estee on 06-03-2009

It is no secret that I am going through a separation. In going through the process, I get to meet with more people who impute their thoughts and meaning about what it must be like to have an autistic child. I hear a lot of emapthy, sometimes sympathy, and it starts to make me uncomfortable. I mean, when Diane Sawyer interviewed Kristina Chew of Autism Vox and now Change.org, and said that joy is a way of masking sorrow, I was really upset with her.

We all have our own journey to take. In writing my book, I have to review old notes and diaries and come face-to-face with myself. I can see where the cracks may have begun to form in my life. If hindsight is 20/20, I can see clearly now.

There was definitely that “mama bear” in me — no one was going to discriminate against my child! Yet, there was also a great sense of isolation and aloneness in those early days. There was a great deal of misunderstanding. There was confusion on my part with the early messages about Adam’s autism in terms of how he played and what I should or should not be doing. There was a great deal of guilt and a heavy load of responsibility I felt upon me. In all of this confusion, I lost friends too. I don’t think they understood this journey I was on. When I became “Activist Mom,” I gained some friends, but also lost some and was called “too militant,” which only gave them greater reason to abandon me, instead of diggning deeper to discover what someone has to go through to become an activist. Activism does not have to be militant, so I want to reveal that it is disconcerting to hear the two as synonyms, and I think there is a huge gap in understanding the journey parents must go on that the “outside world” (meaning families with children without disabilities) simply do not understand.

As I look back on my early words when Adam was not quite two years old but just diagnosed, I was so distressed. I was turning 40 years old. I was being told that autism was “not a sprint but a marathon.” I had written that I felt like “a part of me had died.” I had written that I “envied other families with typical children who were able to talk to them easily about their experiences when Adam could not.” I was angry when people went up to Adam and gave me distressing looks or yelled in his face as if he could not hear them. I was pressured to accept the comparisons between an ADD child and an autistic child — and in many senses, I still think you cannot compare these experiences at all. People were trying hard to be my friend by making my family experience familiar through comparison. It’s an understandable thing to do because it is one’s segue to understanding and empathy. But really, there was no adequate comparison that could match my experience.

The truth of the matter is, I experienced the pain of having a child diagnosed with autism just as much as any other family. I have a written record of it on my desk right now. I can see how isolated I felt, how I didn’t get the support I really needed, and how I fought to stay afloat all by myself. There was no one out there to really support us without pitying us, and I resented that too. Pity was not going to get Adam included in the programs and schools he needed to be participating in.

Adam was my life buoy. Every time, even despite his anxiety issues and his cries, he smiled or made one small step forward, he pulled me back to him and to a new reality. I rebuilt my dreams and my expectations. Yes, I went through doubt and I walked through my own hell, but Adam pulled me out of it. My world shrank to Adam and I and then it exploded to a world of other friends — autistic people and other families — all thanks to Adam. It expanded to accept other people with disabilities in a way I had never done before. My world expanded so I could see things in an entirely different and new way. While I lost many friends, I also gained so many more. This is how life is supposed to work, I think. Life is meant to shatter expectations in order that we grow bigger and stronger and more open to many things.

Desperation morphs, you see. It is part of the journey. A valid part. And you just have to wade through it, just like I did then, and am doing now in the process of divorce. I now prefer to see it as “a part of me died” in order that I could become a more accepting and loving person. So, walk through hell with dignity and an open heart. I promise you will get through to the other side.

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.