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).


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About Me


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.