Estée KlarThe Joy of Autism

If “to be a writer is to violate a trust” – be it in friendship or with family, then, says Claudia Mills, “a writer must be ready to violate it.” (Friendship, Fiction and Memoir: Trust and Betrayal in Writing From One’s Own Life, The Ethics of Life Writing, Edited by Paul John Eakin, pp.101-120).

I must admit, as a newly separated person and a mother of an exceptional child who is growing older by the minute, I’ve been terrified of writing about the nitty gritty details of my, and my family’s personal life. Let me be honest here, for the purpose of life-writing is to tell the truth; I’ve considered what to tell and how to tell it. Now that many lives are important in an of themselves, and also fodder for my writing, I’ve hesitated. And for good reason.

I’ve started a series of posts about writing about children. Many of us who read these blogs are also writers. Many readers are also parents of autistic children. There is obviously a reason why we read each other’s work. Be it at the local café or online, in order to share our stories, we have to tell them. What benefit does this bring? In order to begin writing, I’ve had to consider the following questions:

1.    What does writing about our children give us?
2.    When is “telling the truth” too much telling?

3.    Why do we become uncomfortable with writing about our lives?

4.    Why is the cost/benefit of life-writing?

5.    Do we appropriate or impose an identity upon our children when we write about them and they later      read about themselves?

5.    Why do we tell stories?

6.    How and what kind of life-writing has contributed to positive change and,
7.    Is life-writing necessary?

I think the first question, “what does writing about our children give us? is worthy of conversation here on this blog, I hope.

In 2005, my then husband encouraged me to start my blog which I called The Joy of Autism, because at that time, no one dared to put the words together in the same phrase or sentence. Already a writer, he thought that I would flourish by using this kind of an outlet. And he was right. I haven’t stopped writing about autism and my life since. I had already been writing a book about autism for two years prior to even starting the blog. While Adam was in therapy sessions or at nursery school, I would grab my two or three hours, study-up on autism and then writing about our experiences with the new frontier of therapists was an outlet for me. It enabled me to express my discontent for how a system was set for autistic children. It fuelled my impulse to work to have Adam treated as a person, not a client – to be viewed in all his human glory instead of a person with impairments and deifiencies who had to be made better than he already was. For Adam was my joy. He remains so. I still feel that the best thing I ever did in my life was give birth to him.

So in effect, writing for me became a way of finding myself in a mirage of “suffering.” According to the experts, I had to be suffering. I certainly was, but not because of Adam. I believe I was suffering with the disconnect between how I felt about Adam and how others tried to influence me in the way I ought to feel about him. If it hadn’t been for writing through the process, I may not reached the level of clarity I’ve reached today. I’ve made new friends and alienated other people with my determined stance not to succumb to misery and pity regarding autism. The stories I told between 2005-2008 were extremely important for me to write. I needed to respond to how others responded to Adam and to us. As Victor Frankl said in Man’s Search for Meaning, suffering becomes more bearable when it has some meaning. We can only derive meaning when we tell our stories.

As for my readers, I’ve received many emails tha the reason why people read my blog is because they relate to my viewpoint and they do not feel alone. Feeling as if we are “not the only ones” is an important part of writing and reading. Others have expressed that they too are frustrated in a system of dooms-dayers regarding disabled children. While we have many challenges, most of the people who write to me are united in feeling that there is more to life than just complaining and that we are determined to live good lives no matter if others say we must live otherwise. Are we nonetheless united in challenges? Most certainly. I believe the craft of writing with compassion, as I’ve lived and learned about disability and many views over the past five years has helped me to realize that we can align ourselves with other’s experiences even if we also disagree. In other words, while I may not enjoy Dr. Phil’s renditions of families and disability (in fact, his sensationalism makes me cringe), I can also relate to the challenge that families have when they have special needs children.

I suppose I also write when I get this kind of feedback. As a writer or an artist, or any contributor to the world, the most important aspect of creating art, or in telling our stories is in the sharing and continued dialogue that writing and sharing promotes.

What does writing, or reading, of life-stories give you? Please contribute to the discussion in the comments section.

Next Post: Question Number 2.

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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).

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