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“People With Autism Ace Intelligence Test”– Globe and Mail

Filed Under (Activism, Adam, Autism and Intelligence, Autism and Learning, Research) by Estee on 17-06-2009

I’m leaving my theme of writing about children for a moment to disseminate today’s article in The Globe and Mail here.

It defintely makes a lot of sense to us as Adam has learned to play piano using visuals and patterns. He just had his first recital last week and beamed with “hey, that applause is for me?” kind-of-pride that just swells and oozes with, well….joy.

Writing About Children

Filed Under (Activism, Critical Disability Studies, Ethics, Writing) by Estee on 15-06-2009

The Ethics of Writing About Our Children — Part One

I’ve reached the tipping point. I no longer wish to write specifically about Adam or autism in particular because there are many other things to write about. In 1995, my husband eagerly encouraged me to start this blog and he egged me on, being my most ardent supporter and editor. It was really nice to have that kind of moral support. But now he has left and not for this reason but a general evolution have I reached a new dilemma well worth talking about.

Admittedly, for quite some time now, I’ve been uneasy with publishing his words, his accomplishments, or sharing details about Adam.  Yet it all seemed for a good cause. In pursuit of attempting to erase stigma about autism and advance opportunities for both Adam and other autistic people, I wanted to be able to tell our story from an atypical point of view. I do not think the motives were (and are still not) at all wrong. I am simply reconsidering the manner in which we write about our autistic children and how we write from the time we receive that initial diagnosis to later on in life when we have all evolved. Perhaps the manner in which we write and expose ourselves has as much to do with the manner in which autism is negatively portrayed in the media and the way we feel that the “stare” (of the disabled in our society, not to mention children) is our fundamental right.

Last week, I had posted a photo of my beautiful boy sucking on a lemon. After I had posted it, there was a corresponding sour feeling in my stomach. Something had indeed changed. While I still believe that writing memoir has a real purpose and that meaningful writing on the topic of how must be true, I needed to take the photo down. It was not because of any particular pressure (save for another ignorant comment by John Best which my son does need to be protected from – any adult who comments on a child should be banned from blogging all together in my opinion), but mostly because Adam is now of the age of self-pride and achievement. He has forged his own life and he is becoming separate from me.

This happened from the day he was born, of course. I was not just a mom gushing over her beautiful new baby. I was a mom gushing with new and exciting experience. When Adam was diagnosed with autism at the age of eighteen months, the proliferation of autobiographies and parent memoirs was overwhelming. My response was to participate in the dialogue, in my case, hoping to align more with the introspections and observations of autistic people themselves and to illustrate how I was growing as a mother understanding her autistic son.

Other authors were doing it too. I noticed the ones who were “tell-all,” stopping at nothing to protect the privacy of their autistic children, to those who were also more careful and contemplative about the need to tell an important story, what contribution that could make to the service of social justice in a world that struggles to accept those who are different.  When I first read Ralph Savarese’s book Reasonable People: A Memoir of Autism and Adoption, the tension between writing about his son D.J. or not was evident in his entire introduction. Not only does he ask the question about risking his family’s privacy, but Ralph also touches upon the notion between our autistic children and their sudden thrust into general public scrutiny by government programs, educators, testing and the like.

“…a key question remains,” writes Ralph. “Having taken such precautions with strangers, is it reasonable to invade my son’s privacy without changing his name and, thus, obviously my own and Emily’s as well? I’ve agonized over this question, believing in the end that the story of D.J.’s emergence ultimately outweighs these concerns and, as well, that writing under a pseudonym would both undermine what is irrefutably factual – namely, his emergence – and inhibit the work of activism I wish this book and its author to perform, however modestly…” (introduction).

Michael Berube in his book Life As We Know It,  eruditely discusses the dilemma of the private versus the public when our children are diagnosed with a disability. In reading his work, one can’t help understanding the “if you can’t beat ‘em, join ‘em,” phenonmena. This, I believe, is the simplest way of describing my own personal motivations for writing about autism as a response to the negative, stigmatizing, dreary way of viewing, publicizing, representing and treating disability in our culture. In my view, it is a response to a way of looking and an ignorance of how we look at things and why.

And yet, I hold my son in the highest regard. Not for the purposes of exploitation of a simple idea – that life can simply be a trite kind of  “joyful.” Such a simple description is to me another kind of exploitation, one I’ve been wrongfully accused of — in other words,  a denial of the problems, challenges and ethical dilemmas we experience on a daily basis. In writing specifically about Adam, I struggle daily with preserving his privacy and dignity, and in an Internet Age, where we are becoming aware of what evil lurks about out there, I am concerned for his safety. Such a discussion on the ethics of writing about our children as parents and the role we play, or do not play, is what I will attempt to discuss over the next couple of weeks.

In a writer’s workshop I attended a few years back, I felt certain permission when Asian-Canadian writer Wason Choy addressed the writing of memoir and family as “they know you are a writer,” so in other words, caution to them!! The proliferation of memoirs and workshops and general popularity is on the upswing. People love reading about people. We love to know that we are not the only ones out there. Yet Adam brings about a different kind of responsibility and questioning in me.

In the United Nations on the Rights of the Child, which I reviewed again today, Article 16 states, “No child shall be subjugated to the arbitrary or unlawful interference in his or her privacy, family, home or correspondence, nor to unlawful attacks on his or her reputation.”

The other week, I had quoted Gloria Steinem who wrote, “Most writers write to say something about other people  – and it doesn’t last. Good writers write to find out about themselves — and it lasts forever.”  As such, I’ve been deliberating on the content of my writing as an autism mom, divorced woman, a woman in general and the like. Where is the line between what I write as my own experience and how others are involved in my perspectives of that experience?

In The Ethics of Life Writing by Paul John Eakin, the author quotes Janet Malcom who writes, “ as everyone knows who has ever heard a piece of gossip, we do not ‘own’ the facts of our lives at all. The ownership passes out of our hands at birth, at the moment we are first observed….the concept of privacy is a sort of screen to hide the fact that almost  none is possible in a social universe.”

So perhaps the best we can do is remain analytical about the way in which we observe and represent. Alice Wexler, in her essay ‘Mapping Lives: Truth, Life Writing and DNA,’ discussed Huntington’s disease, which affected her family, and how it functioned as “a textbook stigma for proponents of the US Eugenics Movement in the early 20th century.” (Eakin). “Wexler’s polemical purpose in her memoir was ‘to show one such family, my own, from the inside, rather than as viewed through a clinical or eugenic lens.’” (Eakin, p. 11).

In the coming week, I’ll begin to look at some of the autism memoirs written by parents and continue the discussion of what may or may not be exploitative writing (even if it “positively represents” autism), or writing that continues to explore the tension and the ethical dilemmas of how we represent autism in writing.

“…recognizing that life writing in an age of DNA carries risks, Wexler,” writes Eakin, “acknowledges that the revelation of genetic identity can trigger grave social and medical consequences, including the loss of jobs and insurance. Allegiances to privacy and truth….prove to be in tension; neither stands alone, reminding us that the goods and harms in life come extricably intertwined.” (Intro).

Stop Reading Already

Filed Under (Joy) by Estee on 08-06-2009

It’s summer time in the city and Adam and I are outside! After long months of cold winter days, we are re-discovering Toronto. Some call it the “stay-vacation.” Economic downturns and people have to fend for themselves. And it’s a good thing for community-building too. We are discovering that Torontonians are a nice bunch of folks.

By having this new-found fun, I’m having severe email anxiety. I have a Blackberry, an email address “attached” to my computer separate of my blackberry, I belong to other blogs and groups. The land-line hardly rings anymore and if it does, it’s probably just someone asking for money. My Blackberry has become an indispensable tool for “keeping connected,” with my friends…”how are you?” “need anything,” and wanna have lunch,” stuff. Should we have the fortunate chance to have room in our schedules to squeeze in a lunch, we just might get connected in a way that most of us so long for.

While e-communities can be interesting, getting out more often makes me want to chuck it all. If it weren’t for Adam and being available for him during the day, I would not have a Blackberry — I think I’d just make more calls. I’m, to be frank, fed up with it all. One email address would suffice — one I could check once a day. Me, the text-queen has had enough. Time to throw out (wait, aren’t we doing too much of that?) the e-waste and have some conversation.

Which is why I wonder why I’m here to tell this little thought-of-the-day on my blog except that I’m a compulsive writer (if not in my notebooks, my sketches of thoughts may turn up here).

Me, a writer and reader with my head down so enjoys looking up. There’s too much life to live, especially in the summers. With Toronto festivals in full swing, like Luminato, there’s too much dancing to do! Adam seems to be enjoying it too:

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Transitions

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

Virginia Woolf wrote much on the homes where she lived and the homes she wanted. Her husband enabled it too — if she wanted a place, he would move with her and she would write extensively about the house and its spirit and how she lived (or wanted to live) within its walls.

Adam has moved once. As my husband and I were building the house where we now live, I introduced the house to Adam slowly. I took him on the day we tore down the old building that once sat on the land where this new structure we build stands. I took Adam when tractors were about, nails being hammered. I brought Adam for three years before we finally moved in, the final few introductory days playing ball on the floor as the final touches were being made.

Yet saying goodbye to the older rickety house we had lived in until he was three years old was very difficult despite the hope and anticipation a new home can bring. As old as that painted white house was, built sometime in the 1930’s, my husband and I had spent many a night in the sun-room out back and still filled the house with the things we hunted for together. I went into labour in that house, walked half a block during labour to realize I couldn’t walk anymore and said a goodbye that day to the house that would quickly change as a new baby filled its walls with both cries and laughter. I do remember that day we returned with our newly born Adam. The house was dark on an early spring morning and I could feel it missed me. Its air was already stale. Yet quickly, Adam filled it up again as he took over all of our living space with baby-things.

I also remember the day we moved out for good and Adam stayed with his grandparents. We had moved on a sunny hot day also in a spring season. I remember the first few strange nights introducing myself to the house and the house to me with its new rumblings and gurgles. I never thought I would miss the old white house, but I did. Adam’s first important years were in that house. Still, even though we had moved in, I had forgotten his crib. I could not leave it behind. It was my crib made for me by hand by my own grandmother. It still sat in our old master bedroom, now scattered with dust balls. When Adam fell asleep in the back of my car, I drove up to the old house. It had clouded over and began to rain softly. That may have been the most difficult day, saying goodbye to what it housed — my first meeting of my stepchildren, my first living with Henry, our wedding and the photos we took inside, and of course, of Adam and the family we had built around him.

I am half-living at the moment. I am living in the past and in the future, the present quite a haze of where-to-go-from-here loss and opportunity that divorce sets before me. I am half-married, half-moved as I transition Adam to yet another house and am about to move from the one where I write this post today — the modern one. The goodbye has been quiet and sad, but it is slow, which is both good and not so good. It is good for Adam as he gets used to the idea that his mother will not be living here anymore, but his dad will move back in.  This was the house that started writing projects, The Autism Acceptance Project, with its office overlooking Adam’s trampoline where I would write, create and watch him laugh.

I will call myself a nester. I am building a new nest for my baby-bird. It feels lighter, but goodbyes are a necessary ritual, no matter how painful. I will borrow what I found a particularly beautiful paragraph writing by Louise De Salvo on goodbyes:

“But when will the new house become a home? When I’ve organized its rooms, its closets? When I’ve hung our paintings, our positioned our pottery on top of dressers? When I’ve cleaned it top to bottom for the first time? Or will it take time? Or will it take not time, but instead a bread baked, a soup made, a journey returned from, an illness survived, a few pages written, a sweater knit, to make the house feel like home?

First, though, I must let this house go. But I can’t. Not yet.

I feel like I’ve betrayed this house, for I’m the one who’s leaving. The house can’t go anywhere. It certainly can’t come with me, though at times I have imagined taking it with me, digging it out of the ground, propping it on stout timbers, and moving it, like the houses I’ve seen moved from one place to another on the East End of Long Island. How can I think of letting perfect strangers move through its rooms when it’s sheltered us so well all these years? How can it go from being mine to being someone else’s? And yet if everything about the house can change — the style of its furnishings, the contents of its cabinets and closets, the color of its walls — then why have I loved it so exclusively? While I lived here, I foolishly thought no one else ever would. So now, too, I feel like I’ve been betrayed, even though I’m the one who’s leaving.

About leaving this house, I feel sick inside, like a brute, like I’ve disrespected it, violated it. I feel like I’m abandoning a lover for no good reason. I feel sure the house will miss me, will wish I had stayed on; I feel sure it won’t like the new people, for they won’t understand it and its special needs and endearing quirks — how it doesn’t like curtains on its windows; how it likes its wood-work cared for; how its stained-glass windows must be treated gingerly; how its roof must be cleared of snow.

For this house is not merely a house. It has become imbued with spirit. My spirit. My family’s spirit. When I leave today, I’m sure that I’ll be leaving something of myself behind, something of myself that will never be found again, something that will remain here.”

Louise De Salvo, On Moving: A Writer’s Meditation on New Houses, Old Haunts and Finding Home Again, New York: Bloomsbury, 2009, (pp. 209-210).

The Benefits of Reducing Efficiency

Filed Under (Family, Inclusion, Single Parenthood) by Estee on 02-06-2009

It is no secret that divorce is overwhelming. Add to that being ill, moving, or receiving that “autism diagnosis” about five years ago has made my recent life path rather bumpy — a list of to-do’s and goals and I’m getting tired. If living our lives “authentically” (a popular word used so much today) is a goal, I might suggest that the way we live is anything but.

As a mother of a special needs child, there is more work as our children depend on us for longer periods of time. I’ve devoted my life to Adam, and maybe even garnered some of my identity from that. Yet, how can parents, especially those of us who strive to seek acceptance and advancement for our children in society create a balance? How can I still give to Adam all that I can, be the good parent, AND take care of my own needs, AND contribute to the world?

I may have found part of the answer in the bigger picture. The self-help books are okay, but they all seem a little saccharine. Sure, there are some good tid-bits of advice here and there — perhaps we all need to read them when we are in moments when the waters are just too deep.

As friendships dissolve (a natural consequence in divorce is losing “couples friends”), and I think I’ve gone as lonely as I can go, the insights and work of others have held me up.  It keeps me steady. It enables me to think about the future that is greater than my own issues, but also not whole without them, and that beckons me to become more a part of it.

As any parent — special needs or not — we are all familiar with the daily to-do lists and tasks that keep us running but make us feel empty. What have we achieved? Do we do our daily tasks with a level of intention that keeps us engaged in life and with others or are we just racing through? What is the goal for Adam and I, if not for all of us? That is the challenge we all face and I believe the answer is in slowing down and doing things with greater deliberation.

Also,  part of the answer lies in the communities we build — not from raping the land and a town with money-making developments, but in perhaps growing a little less and creating environments where humanity thrives.  Were we to have beautiful towns, places to walk to get our groceries from local farmers, events nearby we didn’t have to drive to, and neighbourhoods of children gathering to play again, rather than establishing “play-dates” weeks in advance, I believe we would all be less lonely and we would fulfill many goals we have as an autistic community.  Isn’t this what we want for our autistic children most of all? To be included, happy and less lonely? To be contributing members in our communities? How can we create this if we barely get to know our neighbours?

We all have that nagging feeling, don’t we, that we are all less connected to each other than we want to be? Fine, we in the autism community have connected globally via the Internet, but where do we go in our own towns?  Facebook, among other sites, tries in allowing people to advertise events. But what of just going out… unplanned? How many calls do I receive of parents with autistic children (now adults) who are desperately trying to find a group to belong to? And what must I do? I have to think of all the organizations that have formally created groups with specific meeting times that individuals must drive to. By the time we get this far, it already sounds like too much effort.

As I look at the work of Edward Burtynsky in Manufactured Landscapes, I was taken aback by the scale of growth and efficiency at the cost of humanity. His photographs of urban and industrial landscapes, he seeks not to judge our economic growth and efficiency, for he captures a sublime and repetitive beauty in that which we would otherwise call ugly, but he tries to raise our consciousness in how we are living — tenuously and on the brink. It’s as if he is saying, “okay, we’ve reached this point and now we have to change,” not as punitive, but as an empowering statement. We have created manufactured landscapes of such scope and scale that surpasses the building of the pyramids. For that we must recognize what we are capable of!!  Now, he asks through his work, where or what is the humanity of our economy?

In The Geography of Bliss and Deep Economy, both authors use the study to point out that “growth is no longer making us happy…Though our economy has been growing, most of us have relatively little to show for it.” (Deep Economy, p. 11). If every action in our economy burns fossil fuel, it also burns human energy. And the costs are apparent in the desolate backgrounds of Chinese culture, and the faces of a tired Chinese people — the fastest growing population and nation in the world.

So you might ask: What does economics have to do with raising children and marriage?

Absolutely everything.

“In 1946, the United States was the happiest country among four advanced economies; thirty years later, it was eighth among eleven advanced countries; a decade after that it ranked tenth among twenty-three nations, many of them from the third world. There have been steady decreases in the percentage of Americans who say that their marriages are happy, that they are satisfied with their jobs, that they find a great deal of pleasure in the way they live.” (Deep Economy, p. 35)

As I digest my life up to this point, and the general dissatisfaction of our society, I must consider how connected all of this is, like Indra’s Web. Divorce may be overwhelming, as are all the current problems in our world, but perhaps the answer in building a greater sense of satisfaction in our lives by creating more simplicity — shedding the complexity and just being honest with ourselves that we can no longer do things the same way as we used to. It involves, as in divorce, letting go.

It is no surprise to me that there is a strong resurgence of farmer’s markets — there is one I discovered in a nearby artist colony that I now take Adam to on Saturday mornings and it has become a real gathering place.Adam and I like to go out, ride the bike, pick up groceries on foot as much as we can, and we can be more aware of the energy we burn. The more attention and care we bring into our lives at every level, our quality of life improves. So this not only stands for the average family or person, but also for the special needs family, for what we need most is connection with others.

I think about the Supermom I was called to become when I was a young girl (I went to a Catholic all-girls school which further pressed me):  “You can bring home the bacon; fry it up in a pan; and never, never, never let him forget he’s a man.” That commercial tune rings in my head and makes me want to go back to bed!!  It’s not about pleasing everybody. We cannot, lest we displease ourselves. It’s about how we live and do we go to bed every night knowing that we lived our day well, without the frazzle and anxiety of what we must produce tomorrow. For perhaps to live life simply is not to do too much, but to do a few things well, including putting the intention back into the simple things we must do.

I have come to think that being proficient at one or just a couple of things is better than being the most efficient mother — the autism mom who advocates, “fights,” for her child’s rights, organizes events, sits on boards, writes articles, and barely has time enough to cook a good meal. It’s not that I’m going to necessarily stop all of these things, but I can’t do it all at the same time. The time has come to shed and to rebuild, to de-commit and commit, and to teach my son how to live a life well. I am sad to say that divorce has made me view life this way. But this is what happens when life hits you over the head. I may have still come to the exact same conclusions if I were still married, but I believe a marriage is a reflection of all the systems we build. And it too needs the commitment of simplicity.

Ari Ne’eman on Blog Talk Radio

Filed Under (Activism) by Estee on 01-06-2009

You won’t want to miss this interview on Blog Talk Radio. John Best calls in.

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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.