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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Tuesday, September 09, 2008



I have begun my graduate work in Critical Disability Studies and must say am quite overwhelmed adapting to a new schedule with a small boy and still needing to attend to his needs. It is life, I say. Many of us have to work multiple shifts to make ends meet; some of us are single moms or dads. At the end of the day, life happens and we learn to manage the best we can. The key phrase is “life happens.” All the things that happen to us make up the sum of our lives. In this view, most tragedies might be seen as a state of mind.

As I sat in my first class on Disability in a Cultural Context, and discussed Humbaba from Gilgamesh (his intestines were displayed on his face – on the exterior as seen in the illustration above), I thought of our insides and how they repulse us and how we even fear them. Think of our cuts, our surgeries, our open flesh – cadavers, even – and what that connotes. We feel squeamish, not just because the insides are slimy and bloody, but also because our skin protects us. It keeps not only our physical organs alive, but think about how our skins, our surfaces, keep other aspects of ourselves private and away from public view. One of our foremost goals for living is to keep the flesh closed!

“Arguably, Francis Bacon has been most successful in thinking his way toward a kind of fluid body that is at once inside and outside, where there is no longer any sense to the inside/outside dichotomy. ‘There is great beauty in the colour of meat,’ he reminds the interviewer.” (James Elkin, “Cut Flesh” in Pictures of the Body: Pain and Metamorphosis, pp. 108-149).

As we become over-focused on the skin’s surface, the exterior through its appearance, aging and media-defined beauty, we are repulsed to think of it showing what is actually happening on the inside. While one looks young on the outside, however, there is no denying that one’s true age or self, as it were, is as it should be on the inside. On the inside, there lies the truth.

I haven’t quite resolved my thoughts on choosing to have a hysterectomy after my diagnosis of early-stage ovarian cancer, but I am choosing to express them in the raw, like cut flesh. The choice to keep on living for Adam is an easy one for sure, but unlike breast cancer or illnesses or diseases that appear on the exterior, no one thinks twice about what part of my body I am now missing because it doesn’t show. I know my body is changing – sudden weight gain, hot flashes and the consequences of hormone replacement and early menopause. I’ve thought about whether I’m “less of a woman,” now that I know longer have a uterus and a pair of ovaries. I’ve thought about whether I am looking more “matronly” than before. To deny that these thoughts don’t run through my mind would be a lie. They do not dominate but they sort of lie there lolling about throughout my day. One day, this experience will be yet another one of those distant memories and events that will form me. On the other hand, there’s an insistent, if not defiant part of me who insists she hasn’t lost her “mojo.” I certainly don’t feel that I’ve become less of a woman, but I am becoming a different sort of woman. Femininity is very much tied to appearance in our culture, and that is the perpetual struggle.

My body and mind our changing both on the inside and out. There’s only so much work a person can do to hide their age. My husband is gentle on me – telling me that I’m “beautiful” and to give myself time (to get back into shape). Certainly, that’s helped my ego, but can such an assertion also be a negation of what’s happened, and is happening, to me? For a negation or trying to be who I was before the surgery is a denial of what I am now and am becoming. The surgery doesn’t define me, but is part of a set of experiences that does and will sum up my life. This is not the triumph over tragedy that defines me, but illness is a part of life experience that is common to us all. We view it so negatively and it would be downright sacrilege to describe this process I am describing here as “beautiful” or even joyful.

So, is pretending to be normal, young, beautiful, just because it doesn’t show on the outside, make me feel good and if so, for how long? Is saying Joy of Autism flowering autism up? Words and pretense mask the truth of complex nature of losing body parts, becoming scarred, ill, or disabled. To take it further, perhaps becoming ill or disabled is not the real tragedy, but our unwillingness and even fear of looking at the interior, our own feelings towards the body, illness, mortality and struggle, the real tragedy here.

Does losing my uterus mean I have depreciated in value as a woman? I mean, that feminine, human depreciation is the issue at hand here! Similarly, as Irving Zola has written,

“Call a person sick or crazy and all their behaviour becomes dismissible. Because someone has been labeled ill, all their activity and beliefs – past, present and future – become related to and explainable in terms of their illness. One this occurs, society can deny the validity of anything which they might say do, or stand for. Being seen as the object of medical treatment evokes the image of many ascribed traits such as weakness, helplessness, dependency, repressiveness, abnormality of appearance and depreciation of every mode of physical and mental functioning. In the case of a person with a chronic illness of a permanent disability, these traits, once perceived to be temporary accompaniments of an illness, become indelible characteristics. The individual is trapped in a state of suspended animation socially, is perpetually a patient, is chronically viewed as helpless and dependent, in need of a cure but incurable.” (Elkin)

The phenomenal experience of losing parts of my body is important to me in ways I am sure I have yet to discover, even if it’s invisible and therefore easier to pretend to forget. Just as any disability, however, – there is no forgetting. There is always some kind of reminder – some more harsh and prejudicial than others. For autistic individuals, they are the targets of a barrage of insidious statements and assumptions. Yet, what most of the general population tends to forget, our bodies, like our lives, are in flux. Disability and illness, therefore, are natural and therefore no human can depreciate in value.

Acceptance isn’t a religious sentiment how "God all made us equal." I am not saying that we are not all equal, but I fear religion dresses it up a bit too much and becomes a negation of the reality of being disabled. Acceptance is also not about triumph over tragedy, and it isn’t about being “differently-abled” which is used more often as a refusal to look at disability straight in the eye. I fear that the majority of users of terms like “autism acceptance” are now using it as such a negation. Like life, like the language most of us wish to hear, autism is neither here nor there. You can't dress it up, you can't sentimentalize it, you can't make it a horror show either. It is neutral, or at least such neutrality might bring some of us relief from having to explain our, or our children’s disability, over and over again, as if we must justify disabled existence as not a form of depreciated human, but rather, a valuable one.


Blogger Cynthia Samuels said...

Oh Estee I had no idea of this! I'm so sorry! I remember having a hysterectomy and dreaming someone stole my "magic purse!" Pretty funny. I know you'll get used to it; I in fact found it a relief. All my love and thoughts are with you.

11:51 AM  

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