Mental ability and the Discourse of Disease – another comment on a Globe & Mail article on “Treating the Brain and the Immune System in Tandem”

Filed Under (Accessibility, Critical Disability Theory, Disability History, Discrimination, Ethics, Eugenics, Identity, Inclusion, Institutionalization, Intelligence, Media, NEugenics, Newgenics, Research, Science, The Autism Genome Project, What is Disability?) by Estee on 19-01-2015

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Again, the suggestion that mental illness – an umbrella term under which autism has also been thrust – is discussed in terms of biological disease. Says the Globe & Mail this morning: “It probably brings us closer to hammering in the idea that mental illness is a disease… It’s a disease we don’t fully understand.” You can link to the full article here by clicking this sentence. Let us put aside for the moment that our medical journalism lacks any critical thinking or understanding of a now broad oeuvre of disability theory and literature. A critique of the media is indeed part of this blog post. Journalism has become as cheap as reality-TV – let’s make something out of nothing. Sure, I’m a cynic, and I tire of news reports on autism and the discourse of mental illness as disease. They are indeed a big obstacle to much of Adam’s progress in terms of how people accept and view him.

The “great” modernist project has been built around not only biology, but revolutionary biology. This includes environmental – internal and external biological causes for “mental illness.” There are two components to that sentence to unpack; the first being that the modernist age has been defined by production and individualism. The notion of autonomy is conflated with the working citizen who fulfills the Social Contract by virtue of pulling oneself up by one’s own boot-straps. Simply put, it stands to reason in this view that our biological goals have largely been built on supporting what is a statistically “normal” “good”-working body. This was indeed a part of the Eugenics Project. Any body that falls beyond the bell curve, continues to be deemed a financial burden and a cost to society. Therefore, the creation of a dependent body is morally judged and biologically defined. This is typically what is constituted as a social construction under which we have created institutions, special education, early intervention and the like.

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I am tending to envision (as do others) our present age not simply a post-modern age – although I prefer post-modern theory to redefine the human and extend to other ways of knowing outside of the medical model – but a bizarre hyper-modern period (Umberto Eco used this term in hyper-reality, aesthetic, theory). Briefly, this means that we have extended the Enlightenment project – the one that created modernity in search of normality – into overdrive, seeking to land the first man not on the moon, but to create his or her “theory of everything” to define disease – or the right or wrong kind of human. The first discoverer wins the big financial and reputational prize. Disability theorists do not en masse agree or disagree with the implications of biological alterations, and the use of technology has indeed proven to change the lives of many. I do not have the space herein to discuss all of these aspects.

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Instead, let me point to a belief that every research project must create a cure as good as it was for polio. I mention this as an example of the drive to cure diseases of all man-made kinds as well (meaning the socially constructed ones). This raises all kinds of important questions about illness and pain itself including the right to live, die, moral judgements about illness, and so on. I am not mentioning polio for these reasons here, but as an example of how a drive for any cure or human improvement has taken on hyper-funded business investment in research and competition. As such, I am citing the profit incentive for medical research. The two tied are not necessarily wrong until or unless we examine our motives.

I challenge and disagree with many theorists (or bioethicists) who may purport that it is better to separate any linkage of today’s genome and biological research with early twentieth century eugenics. I believe (as Rembis, 2009; Hubbard and Wald, 1999) that we continue to link behavior with biology and have hybridized these into “mental illness/health.” This umbrella term seeks to broaden medical diagnostics from which many industries may profit, namely pharmaceutical and therapeutic occupations. The DSM V is nearly big enough to take a bullet, and it will continue to expand so long as we rely upon a medical model as our only source of knowledge. As such, autism numbers will continue to increase within this model, not because of something environmental or biological, but because of how we imagine and create discourses.

It’s not looking good for autism from where I sit under this rubric, I realize this. We all know that autism, like many other cognitive disabilities, are diagnosed by observation for which we have created an extensive lexicon of disease and abnormality. Bio-markers become a shared lexicon infused with moral implication. Yet, we also know that there are many other ways of knowing and a plethora of disability theory is ignored in most discussions driven by journalists or medical communities. Also, let us not ignore the criminalization of behaviour (an example of moral judgement stirred and shaken with biology) as a reason to create new research business. In this, please test my theory – there will not be one news report of a criminal act that is not linked to mental illness today. I’m not trying to create a conspiracy theory, but there is a definitive financial drive for ameliorating many bodies, and we all take a part in creating the discourse. (Reinforcing discourses is another blog post).

I will agree with Rembis when he states,

“Any informed discussion of the limits of behavioral genetics research must take into account the historically contingent socially situated nature of impairment itself. Such an argument would not deny the existence of impairment. Instead, it would begin with a critical analysis of the social, medical, scientific and juridical discourse at the root of taken for granted classifications of impairment. This type of critical analysis is already taking place in some of the arguments concerning mental “illness” and mental health services …as well as those concerning the social applicability and general reliability of the results of intelligence tests “(Rembis, 2009, 592).

He also bluntly states, “The recent emphasis on genes stems in large part from experts’ drive to tap into the hundreds of millions of dollars made available primarily through NIH Human Genome Project, as well as through huge multinational pharmaceutical companies. There remains, however, a much deeper desire among scientists of the world to bring the vagaries of human reproduction and development under scientific control that continues to drive much of genetic research. Only when we begin to think critically about taken for granted categories of impairment and examine the history of eugenics in a new light will we be able to assess the implications inherent in current and future efforts to control human reproduction and behavior.” (594).

Genetic discrimination (Hubbard and Wald 1999) is already in our midst as the “agents of truth” – a term used to describe how we take the words of medical researchers and how we view them (Rose and Rainbow, 2006) – have already defined autism as a genetic abnormality. Note, that I don’t agree with Rose and Rainbow, however, when they state that biopolitics is not about eugenics as much as capitalism and liberalism (211). Contrary to their position that we need to develop new conceptual tools for critically analysing how biopolitics plays out, I believe that it is impossible to untangle modernity, capitalism and our propinquity to find biological causes for aberrant behaviour and mental illness – morally judged designations with supposed (bad) economic implications. This blog post does not do all of these concepts and arguments justice; however, parents and professionals must all challenge the reasons for the propensity for researching biological causes for autism and/or mental illness. Without doing so, we risk losing opportunities for creating a vibrant future where autism is accepted and where our children may live in peace with education, friendship and family. It is a point of fact that charities such as Autism $peaks spends less than 4% of its budget on services for autistic people (services is another blog post too). Far from being utopian, this thought represents a need for examining social mores in order to overcome the obstacles that prevent social inclusion…for every body. Also, I will agree that the body is under great transformation in terms of identity politics in the way we imagine it, and the other ways of knowing and imagining it can and does exist outside of medicine.

Recently, I am interested, as a woman, theorist and mother, in the lovely intimacy I share with my son as caregiving can be a very physical act. Touted as a burden by many charities and the like – including fellow parents who yearn to have an independent child – I have been grateful to be put into a situation where my expectations have been radically altered; where caring has become an important part of my treasured (ever-changing) identity. This has been created by the reality of caring and the mutually negotiated relationship I share with my son. Therefore, reading accounts of genetically ameliorating autism, or relentless and repeated suggestions that disability (often shoved under the “mental illness” umbrella) is biologically caused or wrong, is troubling for my son and I on many fronts, some of which I have outlined here. Perhaps the Globe & Mail writer Wency Leung may take some of these points into consideration. We need to imagine otherwise.

References:

Hubbard, Ruth. Wald, Elijah. 1999. The Gene Myth: How Genetic Information Is Produced and Manipulated by Scientists, Physicians, Employers, Insurance Companies, Educators and Law Enforcers.Boston: Beacon Press.

Rembis, Michael. 2009. (Re) Defining disability in the ‘genetic age’: behavioral genetics, ‘new’ eugenics and the future of impairment. Disability and Society, 24:5, 585-597.

Rainbow, Paul. Rose, Nikolas. 2006. Biopower Today. Biosocieties. 1, 195-217.

Autism: The Target

Filed Under (Activism, Autism and The Media, Discrimination, Ethics, Media) by Estee on 17-12-2012

I have to tell you that I predicted the autism label would be used to describe the perpetrator Adam Lanza and the horrific shootings at Sandy Hook Elementary School. Before I proceed, let me please contribute my heart-felt condolences to everyone who has suffered by this, and who have lost their dear loved ones.

As I read through my Facebook page this evening, autistic people are frightened for themselves. When I hear of a crime like this, I hold my breath just waiting for someone to spill out the A-word. When I go to the doctor now, he says that when my son will become an adolescent he will become violent. A doctor?! This, my dear readers, is the level of ignorance most families experience. When we conflate violence with a type of person (race or gender) or disability is not only unethical – it’s dangerous to the welfare of autistic people.

We must work to differentiate “mental illness” with Aspergers or autism. Even that term is riddled with blame and stigma. I guess I have to say here that any person is capable of violence. You can be neurotypical and be violent. You can be anything or anyone and be violent. Violence is not a blanket trait of autism.

Our human history is laden with the criminalization and demonization of people with disabilities. When society fears something – be it environmental changes, our fears of what a fast-paced technological society is doing to humanity or now this (the increase of violence as characterizing the perpetrator as “isolated”) – we point the finger at autistic people. Autism is a human construction. It is a label made by people and its definitions keep changing over time. I will soon put a couple of essays here on this blog to show how autism as a construction has evolved in the twentieth century, and how we have had autistic people in our history (other authors have also written much more about this).

From the blog Left Brain/Right Brain, I copied this comment from the CBS story illustrating the prejudice that abounds. I urge you to read this blog post for more information on how autistic people are being stereotyped and targeted:

most people with Asperger’s can function normally in society”, this is a false statement! They cannot function normally! That is why they give the condition a name, as to differentiate them from the “normal” and accepted social behavioral. We have a large and growing population of people with these behavioral conditions that will hinder our public and social progress. I am afraid that we will continue to see these types of violent episodes, these conditions prevent the individual from using “reflective thought”, actions are sudden and instinctual, almost animal like. If you would like know more, go read a BOOK! don’t look it up on the internet, think for your self!

Again, please go to that blog and help to stand up against unethical reporting and mischaracterization of autistic people as violent people (CNN had been reporting that Lanza had Aspergers and then retracted it). I have many autistic friends and a loving child with the autism label. There are many more issues to discuss regarding gun control, the role of the media. Autistic people seem to be the moving target for everything. Please, let’s stop the shooting.

Reflections on the Acceptance of Disability in Society

Filed Under (Acceptance, Autism History, Autistic Self Advocacy, Critical Disability Studies, Disability History, DSM V, Ethics, Inclusion, Research) by Estee on 06-10-2012

Is there a place for the disabled in society?

The purpose of the title is from historical readings that the disabled in history were displaced and living on the margins of society. Who were considered/are considered valued members of society? Socities have been obsessed with placing the disabled into a variety of contexts that justifies human existence, or fears (demons, monsters, mad, deviants) making the normal the privileged members. Without a comparative measure, as it were, what would we humans deem ourselves to be?

I have a series of questions that I’ll be considering (probably for a lifetime). Feel free to try and contribute thoughts in the comment box.

Pro/claiming Autistic Identity:

Is claiming biological identify leading to another possible eugenics movement? Is there a danger to biological self-identification? How important are self-identification and self-advocacy and pride-movements?

Are pride movements perpetuating the dis/abled dichotomies that already oppress? Do you think they have a positive purpose? Should there be a point at which we stop advancing pride movements, in other words, move beyond them? When is a good time to do so?

How important is the label autism to accommodation if autism is a social construct? (It is). Where “special” and enforcing “inclusion” have already proved challenging, maybe even impossible thus far, is it so because we continue to place the disabled out of the confines of the norm. In other words, are we continuing to perpetuate a false dichotomy that does little to value and serve, but more to segregate and isolate? By wanting inclusion, we are saying we are excluded? Does this stance further the goal itself, or not any longer?

Who Gets To Produce Knowledge About Autism?

The DSMV, behavioural analysis and observation, and the categorization of people.

Who gets to diagnose whom? Who gets to produce knowledge and categories about autism? In the past, and to a large extent today, it is non-autistic or “normal” people and we now witness a gradual inclusion of disabled “voices” to this mix. Do disabled individuals appropriate notions of impairment and abnormality enforced by long-held categories made originally by people who have not had disabilities? After all, autistic people are still largely tokenized minorities among autism charities, autism committees, and as participants in autism research studies.

Accommodation and Acceptance:

To what extent is the citing of needs/impairments an important part (or not) of acknowledging that we are all part of the abled-disabled continuum, which herein, I have already parsed?

Do you think the term autism and/or disability will exist one hundred years from now? Or are we a society that simply wears the same dress, just in different colours?

Have we learned anything from autistic self-advocates that assist us to simply accept autistic individuals and value the right of all people to exist, be educated, and be valued, no matter what level of disability, in society?

Utopias and ideals have perpetuated individual and societal notions about what we should be – what we are versus what we aspire to be. To what extent may this continue to be a driving force (as in survivial of the fittest) under an capitalist/economic lens, and where are we now with this “force” in viewing the disabled as part of this? As disability has always been a part of human existence, despite eugenics movement’s attempts at normalizing society and eradicating “deviant” people from the norms, how far have we come to accepting, embracing and valuing human difference? After all, while the eugenicists caused great harm to many people, and have continued to do so as a legacy, they didn’t succeed in eradicating human difference.*

Reference:

*In reference to the eugenics movement from Davis, “Constructing Normalcy” in Enforcing Normalcy: Disability Deafness and the Body, pp. 23-49, 1995:

“The conflation of disability with depravity itself expressed itself in the formulation ‘defective class.’ As the president of the University of Wisconsin declared after World War One, ‘we know enough about eugenics so that if the knowledge were applied, the defective classes would disappear within a generation.’ At it must be reiterated that the eugenics movement was not stocked with eccentrics…Rockefeller, Churchill, Roosevelt, H.G. Wells, John Maynard Keynes”…among a longer list. Some food for thought when thinking about such questions.

Reflections On Our First Decade

Filed Under (Acceptance, Adam, Advocacy, autism, Autism and Employment, Autism and Intelligence, Autism and Learning, Autism Theories, Autistic Self Advocacy, Discrimination, Estee, Ethics, Family, Joy, Single Parenthood) by Estee on 11-01-2012

Tonight Adam asked to be carried to his bed. “Carry!” he implores. He has a determined look in his eye. Usually, he climbs into my lap and expects me to carry him to his bed. So I let him again, and cradled him in my arms, trying not to hit his extremities in the doorway.

“Adam, you are getting too big for this now,” I say, my neck and back feeling strained. I carry him into his bedroom and plunk his heavy body on the soft bed.

“I’m not a caterpillar anymore!” he says melodically, and smiles.

“That’s right Adam!”I am pleasantly surprised. It is a rare lucid statement. With all his movements and chants, for the unexperienced, it is difficult to believe Adam is understanding, or paying attention to, many things. Yet I’ve always known he does, even on the days I get frustrated when he can’t respond.

There is a story that Adam The Caterpillar and the Polliwog by Jack Kent. He is using the line from that story and I know he has associated my discussions about him becoming a big boy to the story. “You are not a caterpillar anymore. You are a butterfly!” Adam lifts his head from his pillow. With a big smile, he plants a kiss on my lips and lies back down, contented. I turn out the lights and say goodnight.

I’ve been thinking a lot about Adam and his growth over the past year. Over the New Year, I’ve been thinking how this will be Adam’s first complete decade, and my first decade as a mom. I simply cannot believe that it’s been that long as I remember our journey with autism and with each other.

Adam was diagnosed with autism at 19 months of age and I began writing privately in coffee shops about our experiences when Adam spent a couple of hours in pre-school. I started The Joy of Autism blog and running the events of The Autism Acceptance Project when Adam was three years old. Reaction to my blog and title of the events (The Joy of Autism: Redefining Ability of Quality of Life) were met with both applause and contempt. Today, we read about the joy of autism and parenting an autistic child much more often. Then, parents who were struggling with challenging behaviours and expectations of a cure, challenged me. What did I know?! questioned many parents of slightly older autistic children who were being phased out of services. Wait until your autistic child grows up, then you’ll be in big trouble; you’ll see what we are going through. He won’t be cute forever! I suppose we’ve now reached that same stage. While Adam can still be cute, he is quickly becoming a pre-teen.

In the past decade, we have struggled with acceptance, understanding from others, and in finding a great education. We deal with stigma, and having to justify why we behave as we do. As parents, we are sometimes pitied or called heroes. It’s hard to be a normal parent in the “outside world,” even though autism is our normal. Having to justify our children, and their right, need, and desire to be included can be exhausting if not downright heart-breaking. We keep going out there every day as we brush disappointment off our weary selves. I suppose this is brave.

I also realize, that as bloggers, writers, and advocates, everyone has an opinion. When there is no one cause for autism that science can find, the speculation gets polemic. The nexus of contention seems to be the nature of autistic being and intelligence; is autism a natural, “alternative” way to be human, or is it a defect of the human condition? Of course, I believe it is what it is, although throughout the years I’ve always questioned my own thinking. I still come back to the value of human diversity. Whatever the reason or the cause, I value Adam for who and what he is, how he thinks. I also recognize and try to assist his challenges. I cannot call him a defect. He is whole, loving, able, with his disability. I can’t think of my life without him in it. He requires the extra effort of all to understand his differences in order to enable him. Being constantly challenged for my beliefs has been exhausting and emotional at times. The blessing of this first decade has been the deeper recognition and understanding of the values I held instinctively, and early on.

In the past decade of writing and talking about Adam and autism, I’ve been torn between sharing parts of our experience and our privacy. In the hopes of helping Adam’s future, I’ve seriously thought about whether or not to close the blog, especially since Adam’s first decade also included a divorce — a challenge for any child, and an extra challenge for Adam. I decided that not only does writing about experience help me as his mother, but that sharing is a gift we both give and receive. I was helped by the writing and sharing of other autistic people and parents. I don’t want to fear the sharing, although I’m continually challenged by this. Of course, it is my duty to protect Adam and his privacy, so I believe that every parent must choose our stories carefully. I’ve decided to continue writing.

I also can’t help thinking about the parents who had autistic children ten years before us. Many were the parents in Canada who argued for ABA to be covered as medically necessary treatment (the political argument still exists). Some parents found out about Dr. Lovaas in L.A. and even moved down with their children for treatment, and I may have done the same thing if Adam had been born earlier — maybe not. Adam was born in 2002. In 1992, ABA was turned to as the hope for the education and life skills training for autistic children. It was believed that ABA would be the way to shape the child’s behaviour and normalize them, in time for school. It seemed much more humane and reasonable than “holding therapy.”

The window in which to do this, they were told (and we were too) was five to six years of age. If a child could not talk or learn normally by then, the window of opportunity would close. The “early diagnosis is key,” notice, is also used for cancer, and I know from personal experience that yes, better to get a cancer early (another part of our past decade). Science, parents, autistic people, however, have proven that there is no such thing as lost opportunity. Autistic people need continued life-long learning. I like to think of that all of us require continued training throughout our lives to put this in perspective.

New methods and teaching approaches have been explored and integrated into many classrooms. ABA therapy has, to some extent, integrated different therapies into their own practice. By “operationalizing” these other methods and taking “data” it seems to have been rebranded as “Positive Behavioural Therapy” or “Support. While there is still controversy there because the therapy still doesn’t fully address the abilities and the nature of autistic perception and intelligence, one could view it as a step forward.

It is also difficult to let go of labels. Political policies are built on them. They are made for autistic people largely by non autistic people. Definitions and systems must be defined in policy, and this has been difficult for autistic people because their issues have not fully been acknowledged. So we must be cautious not to lose sight of the progress have made in the science regarding autistic ability, perception and intelligence. We must continue to work to answer the question on how we can best educate and address an autistic person’s needs, and how an autistic person can participate in society as they are. The dyslexic community had to learn and now so must we.

Ten years before ABA took hold in Canada, in 1982, Lorna Wing wrote her pivotal paper reviving the work of Hans Asperger and spotlighting Aspergers sydrome in her paper, Aspergers Syndrome: A Clinical Account. It was ten years after that paper that Autism Spectrum Disorder label and definition of the “triad of impairments” made it into the DSM IV. In thinking about decades, I thought back to 1972 when Ontario’s last mental institution was shut down. It freaks me out to think that Adam’s life could have been so very different thirty or more decades ago. He would have been even more segregated than he is today.

As I measure the decades against autism treatment, and treatment of autistic people, I see that in 2012, we’re learning more every day. We do so even in a perilous time when “designer babies” arguably threaten the continued existence of people with disabilities. Many communities like ours and the Down syndrome community grieve the loss of others “like” them as a loss of community. We’ve launched autism acceptance movement, akin to other civil rights movements, for the equal and fair regard of autistic people in our society. It is still a nascent movement of which most people are unaware. We have not accomplished full inclusion and accommodation. We still have not raised enough awareness.

As I think to 2022, when Adam will be twenty years old, I hope for the ability for Adam to continue his education and the welcoming of his assistants not because he is unable, but because he can be enabled with them. I want for his participation in his own life planning, pre-college/university prep, and vocational training that will be unique to the needs of him and others like him. I think of his life, like mine, as a continual learning curve — certainly not ending at the age of twenty one. I watch and read the other parents and autistic individuals ten years ahead of us, and wish to thank them for the paths they are forging.

I look ahead to the next couple of decades. There was a time I fretted about it until I realized that time is relative and all people develop as they should. I worried about Adam’s future and where he would live. Yet, I intend to hang in there with him, come what may. I had some very difficult moments after my divorce and raising Adam here alone and this is when my worries were at an all-time high. On one very low day, a calm and quiet thought suddenly entered my head, and it was filled with love. While autism may have brought me some of my greatest challenges, it has also bestowed my greatest gift.

I love Adam more than words. He has always been my pride and joy. I know that it is my duty to assist him, and to find others to assist him along the way who will help him become the man he is meant to be.

Maybe I just can’t believe he’s going to be ten years old this year. I turned on an old video when he was first diagnosed. He is twenty months and has the same smile, the same boundless energy. He is the same boy in a growing, lanky body. He is a butterfly.

Has Our Autism Doomsday Arrived?

Filed Under (Activism, Advocacy, autism, Discrimination, Ethics, Research) by Estee on 10-06-2010

We knew there were genetic studies on autism. We knew this was coming. Perhaps a better title for this would be “for every downside, there is an upside.” This is could be very true about the Human Genome Project.

Today Carolyn Abraham reports on the front page of The Globe and Mail the recent publicity surrounding the findings of an international group of scientists trying to uncover the genes that comprise autism. Throughout the article, Ms. Abraham describes autism and it’s “genes” as a hiccup — “genes fouled up by long stretches of missing or duplicated pieces of DNA.”

Doomsday is coming, or it could come. I know that there are parents who dread having a child with any disability. I understand that no two families are alike in the way they approach the subject. Yet there are families who do cope well; those of us who value the children we have and balk at the concept that humanity can be distilled into DNA. Of course, it can in a sense, but the complexities of being human cannot. I could tear this article apart. I am utterly offended by it, if I am to admit my leanings. I cringe at the thought of my son reading that he is a “hiccup” or a series of “fouled up genes.”

Just as important is the idea, the very scary idea I might add, that we can terminate an autistic pregnancy. The study co-author Peter Szatmari admits that the prospect of the commercial test that will prematurely reach the market “makes me nervous. I don’t think we have the science yet to nail it down. This isn’t one gene but a profile of genes, a pattern of susceptibility, not cause.” As reporter Abraham writes, “in the direct market age, the market rarely waits for more research.” In other words, in a world that hardly understands disability, how disabled people live and feel, disabled pride, autistic pride, and rarely hears or listens to the voices of autistic people, parents may rush to pick up a screening test. Without this knowledge, what do you think is going to happen?

Then it occurred to me: Adam’s parents, that’s right — his father and myself and his entire family — would likely have many of those genes — those “fouled up” ones in one way shape or form. Maybe this would mean I would not be here, his dad, his grandparents, his Bubby or his Zaida. “In all,” says the Globe article, “the study spearheaded by post-doctoral fellow Dalila Pinto at Sick Kids, identified more than 100 genes affected in the people with autism, many of them forming a part of a network that governs how brain cells grow and talk to each other.” Perhaps this comprehensive network is part of all of us that make up autism. Autism is an accentuation of our very human traits.

As far as I’m concerned, this is doomsday approaching fast IF the dialogue about how we use science — how we implement knowledge — better be linked with a dialogue about not only what it means to be human, but the very right to be disabled, autistic and yes, what can be wonderful about that in our world that has been taught to fear disability. There is a social aspect here that is running the show and we are a highly biased society against those with neurological differences and further, we write about autism as if it’s the worst thing on the planet.

In our family, and in many others that I know of, it is not. Premature reporting of scientific findings without a balanced argument (or even acknowledgment that there are people who prefer to be autistic) of this kind runs a very high risk.

Another discussion that may help our own:

The article referred to in Nature here.

Restraint as behavioural tactic on CBC tonight

Filed Under (Acceptance, Activism, Critical Disability Studies, Discrimination, Ethics) by Estee on 08-01-2010

Tonight on The Fifth Estate we can watch the documentary Out of Control which addresses how youth and the mentally ill are treated for their behaviours by the use of restraint. Ashely Smith, once detained, committed suicide.

Yesterday, Boy Interrupted was aired about Evan Perry who had bi-polar disorder and committed suicide by the age of fifteen. “Bi-polar disorder,” says the family doctor in the piece, “is like cancer. It can kill. Some people survive.” Produced and directed by Evan’s mother Dana Heinz Perry, we see the family’s genetic history of the disorder while also understanding the mother’s profound love of her child.

It strikes me as odd when I hear stories, sometimes, of people saying to parents of disabled children that, if they had died, that it’s somehow a “relief.” For certain, watching Boy Interrupted made me realize my love for Adam, autism and what a travesty it is that we complain so much about the so-called “problems” we have instead of viewing them as opportunities to make the world a more accepting place. Yes that takes patience and disciplined work. While I know “making the world a more accepting place” is becoming an over-used phrase, thus coming to mean nothing, our work to understand mental illness and disability and de-stigmatize both is valuable and worth it.

We don’t seem to value people who have disabilities, depression, or any other physical illness very well. We spend more money and time putting people away rather than investing in them. Charity without thought and engagement is particularly concerning as it is a way of avoiding real issues. In the Buddhist sense, I read something that the 17th Karmapa (thus ordained by the Dalai Lama), who stated about generosity:

True generosity requires some wisdom — a clear understanding of ourselves who are giving, what we are giving, and to whom we are giving. If we use our intelligence, then generosity benefits both ourselves and others. We should not give just for the sake of giving or from an old habit. Further, in the process of giving, we should not become distracted, for losing our focus diminishes the scope and effect of our activity.” (Shambala Sun, January 2010, p. 52)

Many other Western philosophers felt the same about charity, particularly Nietszche who believed that charity was given by the rich to make them feel superior. It is also a way to avoid engaging with real problems and people and thus pretending the problem isn’t ours, but we are good people to at least do something about it. While charity can be helpful, it can also be a declaration: go away — I don’t want to deal with it, or, thank God it’s not me.

When we watch The Fifth Estate tonight and think about people like Ashley Smith of Evan Perry, I hope we can all try to think differently about all different kinds of people… and how we “treat” them.

Barb, Tim and Annie Farlow and the quest for justice

Filed Under (Critical Disability Studies, Discrimination, Ethics) by Estee on 30-11-2009

What does the story of a three-month-old baby with Trisomy 13 and her death have to do with the rights of all disabled individuals? It’s a question that Barb Farlow and her husband Tim have raised for the past several years, and today, the loss of their court case was featured in The National Post.

I’ve known Barb for several years and supported her after we shared numerous emails a couple of years ago about her daughter, Annie. Only because of a difficult year in my own life was I unable to support Barb more actively in her quest in 2008. Barb with her husband Tim, have pursued justice for their three-month-old relentlessly. Not only has their struggle symbolized a deep respect for the life of their daughter, but for the rights and dignity of all disabled individuals.  They have argued that  because Annie had Trisomy 13, hospital staff  executed a DNR from a subsequent illness without her parent’s permission. The Farlow’s, having taken great pains and effort to ask questions and pursue the case, have raised the question about how we value the life of disabled individuals, no matter how severe their disability.

Noreen Kelly wrote in her piece Crusade for Change:

“Most infants born with Annie’s genetic condition die shortly after birth; few live past the age of 10. Despite these odds, Barbara and her husband Tim decided, after much research and deliberation, that the right thing to do, for them and their family, was to give Annie a chance and to make medical decisions for her in the same way as a child without disabilities. The Farlows were assured that Annie would be treated like any child, and that if surgical considerations arose, they would be discussed and a decision would be arrived at mutually with the physicians.

Annie was born full term and received excellent supportive care at a Canadian hospital for the first several weeks. In August 2005, when she was not yet three months old, she suffered episodic respiratory distress. Annie died within 24 hours of arriving at the hospital. At that time, her parents believed that she would not have survived surgery and that her death was natural.

After obtaining the medical records and discovering the shocking facts of Annie’s last hours, Barbara and Tim Farlow made an exhaustive effort to seek answers and a resolution with the hospital. When this effort failed to yield much beyond an insincere apology and token, ineffective plans, they believed they had no choice but to sue the hospital and two doctors involved. The allegations included practicing a policy of non-treatment for children with certain genetic conditions and secretive euthanasia. Annie’s story is a multi-faceted case including allegations of violation of civil laws of consent and violation of international human rights laws, including the Convention on the Rights of the Child.”

Barb and Tim loved Annie deeply — that is evident from the emails I’ve shared with Barb. As a mother with a special needs child, though, I also feel deeply indebted to her, her family and to Annie as they have helped to raise awareness in hopes that more disabled people everywhere will be granted the same “net worth” as those living without disabilities.

The Benefits and Consequences of Telling True Stories

Filed Under (Activism, Adam, Art, Autism and The Media, Critical Disability Studies, Discrimination, Ethics, Family, Writing) by Estee on 06-07-2009

This post is part of a series of posts I am writing on Writing About Disabled Children.

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We are all storytellers. The only difference is that some of us write things down. The other difference is that some writers are also artists — able to craft a work in order that bigger ideas are suggested, open-ended, and not written as if to strike a blow to the head. In other words, it’s much more effective to create the sublime message in a work of art in order to convey an impactful message, oftentimes, than simply stating the message itself. Art is the bridge to understanding humanity.

In my last post Why Do We, As Parents, Write? (see several posts down), I mentioned that I was trying to respond to a series of self-inflicted questions. Several of the questions all have generally to do with the consequences and benefits of writing about children with the additional peril of writing about disabled children — usually children who cannot speak for themselves.

As I’ve noted, I have numerous reasons for raising these questions at this point in my four-year blogging history. Firstly, I am going through a divorce. I hesitate because the story I would tell would still be influenced by my being too close to be self-deprecating, no matter what the circumstance. I tend to think that all great memoir writing about difficult life circumstances has this element in it: the ability to see oneself and one’s on imperfections even if the action towards you was unjustified, as well as the ability to be compassionate to characters who have done unjustifiable acts. In what I believe to be interesting narrative, everyone has their reasons which leaves out judgment. To understand others and their motivations is the foundation of all good writing and formulation of interesting characters. Of course, I am, as they say, still “too close” to write about my personal life, if ever I do at all. I will likely have more interesting things to write about.  In order to tell really good stories of truth or fiction, we need to understand our perspectives and assumptions at a particular point in time. Without dissecting them, our writing and characters remain flat.

One concern I have is for my son to read what I write about him. I want him to feel that I was real and wrote about him with truth, compassion and dignity. Compassion is the key to telling true stories, I believe. I want him to think that I was a good artist who didn’t have to expose every detail, but got the bigger point across. So, I have made a commitment to him and to myself to write when I feel I can truly step away from things that are still emotionally charged. It’s not that I want to be emotionally distant – indeed my emotions are a full part of my experience and they need to be written.  It’s the manner in which I’m able to write about them that matters. It is the art and the craft of writing that can elevate a trite piece of writing to a piece that lives long after we’ve moved on.

The next issue I am having is one of revealing details about my son at this point in his development, perhaps influenced also by a divorce process (and thankfully both mom and dad are doing an excellent job as parents, still) as the vulnerable need not be made more so. This is my paranoia as his mother and I realize I am supposed to think about such things. It is my job and obligation. Even if he is resilient and strong (as we parents generally come to realize about our growing children), we are on our guard nonetheless. Writing about the vulnerable – be it children, disabled children who can’t speak for themselves, disabled adults, the aged and so forth, requires us to think much more deeply about how we write.

As I see Adam develop, my attitude has changed and softened significantly than at the time of his diagnosis. I think there is a huge urge of many parents to write about the diagnosis because there is narrative tension that is still interesting to the outsider. This is when most writing about autistic children really gets done. We read perhaps too much now (just think that a few years ago there was very little), on that D-Day or “diagnosis day.” There is a lot of interest from new parents of disabled children to relate to the pain and conflict of early diagnosis. Little is written about learning how to live with a disability in the sense that the worry dissipates. Mostly, what we read are memoirs about how parents seek to cure their children instead of learning about themselves as parents in a world that is filled with different kinds of people. Donna Williams remains the top of my list of autistic writers who not only write beautifully and artistically, but tell a story that goes beyond childhood. The tension is still there, but the story isn’t sensationalized for the sake of selling books.

Let’s face it: our lives are not like everyone else’s, which is why so many of us need to write.  “Suffering has always animated life-writing,” says Arthur Frank who has written about his own illness. Indeed that familiar theme of finding peace, a spiritual awakening, an appreciation for life itself, is a kind-of triumph-over-struggle theme that appeals to most of us in a challenging world. I think of Audre Lorde and her cancer diaries and poems that I devoured after my two cancer surgeries last year. Her honesty and artistry helped me see myself as fully human even with my stage of dwindling self-image and pain.

Yet what is especially disturbing to me is when that theme is diluted into a sugar-coated story, only telling of the good stuff — you know, how all our children are “angels” kind of rhetoric.  To my chagrin, I’m afraid that much of the “acceptance movement” has turned saccharine and in it a fear to acknowledge the challenges and the pain as well as the joys.

Conversely, when all a parent does is complain about how horrifying their disabled child is and disruptive to their lives, without qualification or deep circumspection, is equally if not even more disturbing, for we get a sense that we are not being told the whole story, or perhaps a story with a particular agenda and worse, we are being told that disabled children are a blight and burden on society thus threatening their right to exist. So in order to write a good memoir, and how we define what is good if not ethical life writing is what’s at stake here.

Frank says, with regards in how to respond to illness and disability, “what is done within the body, what happens in relationships and how existential and spiritual attitudes change – is presented as a sequence of choices. The writer’s identity becomes crucially implicated in how she or he makes these choices: a person’s responses are a measure of his or her character.” (p. 174 The Ethics of Life Writing).The stories we choose to tell and how we tell them in the case of writing about our children, is therefore an indication of our character.

Somewhere along the road to raising children, either at the time of birth or later on, our expectations were thwarted. That in and of itself has been enough to warrant many people to approach us and say, “you should write a book!” But how good of a book? To what end? What are we trying to achieve?  My soon-to-be ex husband even came to me regarding the circumstances of our divorce stated “if I were you, I would write a book about this.” What an invitation!! Not that I will necessarily take advantage of it for my own personal gain, for that is not the point here.

I did, in the past, write about many encounters with friends and family regarding discussions about autism and their reactions to Adam to which I was angry (an honest emotion), but used as illustrations of a day-in- the-life of an autistic family. I felt that these examples were especially important to illustrate how our society has been trained to react and respond, no less treat, disabled people. Those encounters in mere blog posts were enough to achieve that tension. In as far as maintaining relationships is concerned, some managed to stick by me and support the purpose of the posts, and others couldn’t handle seeing themselves within the narrative. I once received an email from a friend’s husband referring to my writing as “getting things off my chest,” thereby diminishing my feelings, our significant experiences and my writing. Yet, I write and express to get things off my chest, that’s for certain. It’s just that I hope not to sound pathetic doing it. I hope the writing transcends the individuals to illustrate the more important points —  and the point that we all have much to learn.

But isn’t that what writing, gossiping, telling stories is all about? I am making a general assumption here that all gossip is negative, which isn’t necessarily true. I will also suggest that gossip, for the most part in my view often has the sole intent of denigrating another person. So in telling true stories, intention matters.

Telling stories, it can be argued as parents of disabled children, is still important. It is especially important that we as parents write  well — truthfully and with dignity. I cannot say that I have accomplished to my satisfaction, the “writing well” part. To accomplish this, it takes great deliberation and like anything, practice. To live with disability in the family, as in any other oppressed minority group, is to also live politically whether we like it or not. This adds another sensitive dimension to our writing.

Many parents of typical children will not experience this to the same extent, if at all. For me to tell those stories during those early stages of Adam’s development were exceptionally important in navigating our way through ignorance and understanding it – my insecurity about such statements admittedly came of a place where I was also in their shoes, that is the shoes of the ignorant – completely unaware of the full extent of disability itself — meaning the community, the politics, the meaning and history of disability, the lives. Should I keep these stories to myself or do they benefit not only myself in my growth as Adam’s parent, but also others who are on the same path? Would those people still be my friends if I hadn’t of told those stories?  What is friendship anyway if we cannot be honest? Right…? (I am happy to report that the really great friends still hang around even if rigorous disagreement or debate is involved). Of this I would emphasize that the intention is important with regards to telling our stories. It might just be difficult after all, to be a writer.

In her essay, Friendship, Fiction and Memoir: Trust and Betrayal In Writing From One’s Own Life, Claudia Mills  discusses the risks of writing about one’s family and friends and seeks the meaning of friendship as her guide. Using Aristotle and Kant — “we seek the good for the other for his own sake and not our own,” (Aristotle) and “The strictest friendship requires an understanding friend who considers himself bound not to share without express permission a secret entrusted to him with anyone else,” (Kant)   –Mills painfully deliberates, as if her conscience is eating at her: “What contexts are we primae facie justified in sharing the stories of our most intimate associates with others?”

She suggests that she couldn’t have relationships if she couldn’t talk about them – that we benefit from talking about them and notes how secrecy can be “corrosive and damaging.” Yet there is a difference between talking or writing at someone else’s expense, as I said, in order to hurt them. While telling the truth may be hurtful to others, or be outright embarrassing, it is this shame that is the most costly to our peace of mind. There is nothing more liberating than living your life out in the open. But living mine out in the open does not necessarily mean I have the right to live Adam’s out in the open for him. So we must choose our vignettes and words carefully, without over-editing which also takes away from the authenticity of an interesting story. Mills takes the easier route and chooses to write fiction, even though her family and friends seem to recognize themselves in her stories.

For parents with disabled children, this writing can be a cathartic process and a way of breaking down the reductive view of our disabled children. Arthur Kleinman, in The Illness Narratives, suggests that people who are ill are reduced as people in terms of their pain and debility, or their illness. That proverbial medical view of the disabled person as a mere patient instead of a complex individual remains a part of the demoralization process. Instead, Arthur Frank turns it around. He calls his personal narrative a “remoralization process,” an act of telling a counter-story to the ones that we see all too often in the news and Hollywood and much of literary media where disabled people are used in the background like bridges to the “real” characters. In looking at narratives like Michael Berube’s Life As We Know It, and Thomas Murray’s, The Worth of A Child, and Cranes’ Aiden’s Way, among other parental narratives, Frank points out that we as parents write in order to break down the assumptions – that our writing can be “acts of justification” as we write to justify our children’s right to exist.

As I continue my writing and work to become a better, more artistic writer (I am hopeful with much more work), I am aware that to summarize Adam as a series of impairments, to finalize his character in the narration, is what the medical community already does. So I want to avoid this at all costs. “[Reflexivity] is moral work, since what’s at stake is personhood and its entitlements.” Most of us are all too aware of society’s rush to categorize our kids, to judge them, reduce them instead of viewing them as people with a right to be included in everything.

This is a great risk that we undertake as parent-writers — this act of finalizing our children, defining them  and thus imposing identity that has really not yet been fully formed.  As Frank notes about the writers of the exceptional memoirs cited above, “They resolve this dilemma, and keep a dialogue open, by refusing to say any last word about their children. The child’s future – his or her horizon of possibilities – is kept open, though this requires nothing less than redrawing the horizons of human possibility itself. These writings become teachings in the morality of respect: not principles of respect, as in Kantian respect for persons, but practices of respect, which the writing not only describes but reflexively exemplifies.”

I hope in my next post about writing about children, I will be able to compare the recent writings of Jenny McCarthy and Temple Grandin’s mother’s older book A Thorn in My Side, in order to illustrate what I consider to be problematic in the name of our children’s dignity and telling our true stories.

As for my story, it’s easier to dance around it than tell it at the moment during my set of current circumstances. I am only left with the deliberations of what and how to write next.

References:

Credit for the term “narrative tension” goes to Arthur Frank in his essay, Moral Non-Fiction: Life Writing and Children’s Disability, from The Ethics of Life Writing.
Claudia Mills, Friendship, Fiction, and Memoir: Trust and Betrayal in Writing From One’s Own Life, from The Ethics of Life Writing, edited by Paul John Eakin, New York: Cornell University Press, 2004, pp. 101-120
Ibid, p. 102 & p. 110-111.

Why Do We, As Parents, Write?

Filed Under (Ethics, Writing) by Estee on 03-07-2009

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.

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


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.