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).
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.
Interesting topic….
When I wrote my “epic” (27pgs) in April to the Federal gov’t on autism, I was very careful not to name names of our caregivers/teachers/therapists nor who they worked for. Be good or bad they hadn’t given their consent. Also, I had a lot of trouble deciding on how much was too much about the boys. I have been told by those that have read it (not the gov’t but my FSW, family), I have managed to reach a good middle ground. It’s a hard decision to make and a hard one to go back and look at all that’s happened. Some you want to brag about, some you want to forget ever existed.
One of the reason’s I closed the blog was b/c my “therapy” had to be editted. So, it was back to paper I went.
I have read some of the family memoirs and watched other’s slam them. Mom NOS didn’t like Strange Son b/c Portia admitted that her son’s autism upset her and Mom-NOS wanted more about the child than about Tito and CAN. Sharon was rude to “The Horse Boy’s” Mother on her blog The Family Voyage. A book she’s never read.
I think both of those families should be commended and thanked for telling their stories, whether you think they are “appropriate” or not. Those who have issues with these journies, IMO Mom-NOS, Sharon and anyone else, should write their own.
Journey’s are personal, some can post their deepest thoughts, dreams and leave them out for exposure and other’s cannot. The question becomes what do you hope to gain by telling your story. Financial, to just being part of the “clique” so you don’t feel alone, are all valid reasons IMO to do so. Is there legislation you wished changed??
If you are only writing for yourself and your son, then maybe it’s time to move on.
I’ve added to that epic, it’s up to 42pgs now. A lot is stuff that’s gone on via the Autism hub and autism land in general. Stuff I wanted to sort out in my head and doesn’t fit my journal writing. Dh asked me if I was writing a book and the more I think about it, the more my answer is “No”. It’s for me, for me to sort out my own thoughts and… one day for the boys.
Farmwife said “I think both of those families should be commended and thanked for telling their stories, whether you think they are “appropriate” or not. ”
Estee says: I don’t think I’m debating the issue of “appropriateness,” and the topic for ethical debate is not within the realm of simply “my opinion.” I too am a writer and have written much on our family journey with Adam. I do so in the sense I have written about here. However, the topic is a worthy one and worthy of considering perhaps why we write, how we write and if out point of view, even when “positive” is not still effected by an exploitative view of both children and of disability.
I am not saying not to write — a writer must do what they must. That is the writing compulsion. However I consider that the responsibility of the writer is to also consider the consequences, no matter how important the story is, or how much it helps others or needs to be told.
The “You” was suppose to be a general “You” as in the world at large that likes to read such stories, and then is upset for whatever reason because of how that person tells their story or the outcome of that family’s journey was. (that’s windy sentence :) )
When we first started in “autism-land” a little over 7 yrs ago I wouldn’t read any of the family stories out there. I found them depressing and did nothing to meet our needs.
I wanted books that gave ideas. The first of these for us was Karyn Serrousi’s book. No, by no means did with think Bio Med was a “cure”, nor were we planning on chasing down DAN Dr’s, but getting rid of dairy was relatively easy and to finally get rid of the diahhrea and nightly terrors/mares was a HUGE milestone for us. It helped, gave us breathing room and we moved on from there.
Once ABA was out of our house I had severe burn-out and a friend talked me into starting a blog and she did too. It helped, it helped a lot. And as you said, initially I could post what was going on, then I had readers, then I had to go back and delete a lot of those early posts and….. after 18mths (and 18mths already since I had it), I had to let it go. It was hard, very hard to let it go, which is why I was over on Trusera for a short time… I still needed… something.
I have read a lot of autism related books in the last couple of years, probably b/c I’m now comfortable with the diagnosis and what it means for us. Family journey’s to homeschooling ideas (b/c we do extra at home) to The Miller Method. I don’t read them looking for a cure. I read them now to be informed of what’s out there. When someone says “did you hear about”, I know what they are talking about and have had a chance to form an opinion and why on it. I also have yet to read a journey that I felt exploited someone’s child. Most have been written with great care.
Writing is very personal. I would think about what you hope to accomplish by your writing. As you said over the years your goals personally/professionally have changed. Are you writing for your or the world at large?? One you only need a paper and pencil… the other a more public medium. What do you hope to accomplish by that writing??
Gotta go.
Good topic. I came to the decision to stop blogging, even anonymously about my my perspective on my son’s childhood, mostly because I felt that he had reached an age where it was no longer fully respectful But I have mixed feelings about the decision. I continue to come across parents who are new to a diagnosis and seem to have got hold of the wrong end of the stick in a way that is going to cause pain both for them and their children. I meet others who could clearly use the brotherly arm across the shoulder than I found from other blogs. I send them to the Hub, hoping they will find what I found, and continue to find. I don’t want to to go away because everyone makes the same decision that I did.
I know that disability can be seen as another factor here, but my conclusion is that there is no fundamental difference between a parenting blog about a kid with blond hair, or black hair, or a passion for tennis or autism. I don’t think particular attributes should make children any more or less suitable as blogging subjects.
So I guess I would take my lead from books and blogs and magazine articles about parenting and kids in general. It does seem that this is largely a question of personal choice, which takes into consideration the views of all the family members.
Hopefully, if you do stop blogging about Adam, you will continue to blog about your own story. It’s nice to know that the road is shared.
Well, I’m trying to look critically at writing in general — children and memoirs. I don’t think this means I’ll ever stop writing. I do think my story is the one that can be shared. But I’ve had some (I think) interesting observations about how people write and how we see things.
I think you’ve both made spot-on statements that we write, paint CREATE because we inherently need to share with one another. The history of story-telling is long and important. We build our humanity by sharing in this way with one another.
What makes a good work of art, though? That is yet another question. It may even be important when talking about areas of social justice. I believe art plays a huge role in changing attitudes, which is why we are working hard to find a way that TAAProject site can be used by the public to self-promote their work (while being moderated of course). Stay tuned for that. I’ve been working on that in the background these days and it’s been more difficult than I thought it would be to set up.
Anyway, I hope the discussion continues as it is a fascinating one.
this is such an important topic. i am wrestling with these issues even as i am writing a memoir about raising dear fluffy.
Nothing is absolute when writing and the ability to reach out to others and learn and progress is what I thought it was all about. Although children and their need for privacy and protection is paramount. From what I have read from the writer and the comments, it is all part of the evolution of growing and the need for human rights. The future and how it affects our children is what will count for them.
I have read your blog for a couple of years. I have struggled with being loyal lately. I had a hard time articulating what the issue was but I decided it was getting too personal. I to have a hard time riding the line of privacy. Early in our journey we decided that the automatic publicity that comes with a diagnosis. I really enjoyed this posting and I am looking forward to the new perspective.
I have always admired the candid way that you have shared your experiences and Adam’s experiences. I think you have always done this in a very tasteful manner that is repectful of Adam. At the same time, I can understand how you may have reached a point where you think that things need to change.
I have observed, in my 2 1/2 years of blogging, that blogs are ever-changing and evolving. Some bloggers change the degree of anonymity with which they are posting, others stop blogging altogether, some blog less frequently.
The main reason I no longer blog as frequently is because I am so busy with my children. However, I have also felt the instinct to exercise caution in my posting. It is very discouraging to see how those who accept autism and have a forum to share it with many are subject to nastiness and ridicule.
Hi, I have recently stumbled upon your blog and though I have not delved that deeply into it, you have definitely gotten my interests. You have brought up some issues that opened up my mind. I have recently started a blog myself (http://clarissac.blogspot.com/). I have a 24 year old brother with autism. At first I was afraid to blog about him because I felt I am violating him, though he’s not like you’re son, who seems to be becoming more independent accomplished, which is truly amazing! You must be a wonderful mother with a wonderful son. I wish my brother was more independent, esp. at his age. Though my mother still works her butt off for my brother, I wish she found the right people and resources earlier.
And you don’t always have to write about Adam. I’m sure you have a million things to say that can open many peoples’ eyes and hearts.
good topic ! I wonder the same
I wanted to add that one reason I blog is to be purposeful about parenting – keep reminding myself of the mother I want to be
Another is to give other mom’s a perspective that children with Autism are beautiful
There is so much bleak information out there – without blogs like celebration of our journey , Kyra’s, yours and some more.. it would have sucked
There are also such extreme stories in addition to the beak portrayal in the media – that without these blogging moms I would not have known that its possible to be joyful or unfrenzied with autism