Learning About Adaptation On The Road

Filed Under (Single Parenthood) by Estee on 30-07-2009

We are free to view life from many possible angles.

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I think I am making my way into singledom with grace. Those of you who have followed this blog might have noticed some soul searching buried within some of these posts. A surgery, a husband leaving, and a vast new expanse of what-ifs and a nasty bit of weight gain (okay, that’s the vanity part of me…I gain weight when I’m down as opposed to you lucky ones that lose piles of it), and I finally got to another tipping point — my life has to go on and it may even get a lot better.

I did the sleeping thing. The “don’t want to get out of bed” thing. I did the crying and the grieving. These are the things that one does when a relationship has been an important part of your life.  I did what I had to do until I realized that I had to put a time limit on it. If all of our pain and suffering is created by how we view our present circumstances, I thought I’d better change the view. So I decided to take my first trip alone since my separation. And it was life-changing. Funny how getting out of the confines of your daily existence pats you on the shoulder to remind you again of who you really are. I quite enjoyed traveling on my own, meeting really nice people on my recent biking trip from Prague to Vienna. The flight was wonderful on Austrian Air. It exceeded my expectations as a chef was on board and served very good food. I was excited to use my German again —  I hadn’t used it in over fourteen years which was the last time I spent living in Germany. At first, I missed sitting there next to my husband as this symbolized a turning point for me. I briefly wished he was there to share this with me, as we had traveled so much together and he was a good travel partner. But I soon eased in to this new reality that this would be my first major European trip on my own again just as before I met him. I relaxed into my seat and decided to let the ride just take me along. I had been studying in Europe before Henry. I was learning new languages. I had many friends from around the world. I sensed I would be coming full circle.IMG_0297

I noted how I was adapting to my days on my own, and to meeting new people with ease. I recognized that I could ride at my own pace without having to slow down or keep up with my partner. This Es-“tella” got her cadence back. I felt vivacious and social. If you’ve seen the movie “How Stella Got Her Groove Back,” you’ll get it.  Divorce can make you realize how you may have lost yourself in the process of giving yourself up a little too much. No one should have to go that far, but more often than not, we do without being conscious of it. Sometimes we do it because we believe that’s what love is. The lesson may be in the need to keep track of ourselves as partners and individuals within a marriage — to become conscious and honest about who we are and what we want and be accepted for it. I think partners need to regularly check in with one another and definitely share some major interests. Aside from my mini post-divorce evaluation here, I have to laugh at some of the things I do when I’m on a trip alone — taking pictures can be a little tough. It’s hard to get the background in with your face close up to the lens which tends to expand your face like a blowfish. IMG_0381

But hey, I had to have a picture to prove I was there!  The trip reminded me of the pace of life, the ups and the downs. But most of all, it introduced me again to the self that got lost because I never fit into the box I was asked to fit into (except for the distorted picture frame…okay…there are advantages of having a partner too!).

Let me get to my metaphorical point: I began my first cycle day with a crash. Yep, day one I had a whole two-minute ride! As I traveled up a steep climb, not able to figure out the new-ish gears (duh me — I couldn’t locate them as they were at the front and the back of the handle), and my feet were strapped in so I couldn’t get them out quickly enough. I could not change gears and I lost control of the bike and fell into a bit of a long ditch….on and over my head. As I fell over and over again, it was one of those circumstances that you can see yourself and do nothing about it. I thought I was screaming on the way down, but a Czech lady (the only person who spoke English that day in Central Bohemia), told me she could barely hear me at all asking for help. I was in a state of shock and enough pain (I am still feeling it to this day two weeks later) to warrant a 911 call and a trip to a Bohemian hospital.IMG_0299

A testament to Czech hospitality, the woman offered to stay with me the entire day to translate to the doctors when she was really supposed to be spending vacation time camping with her sons. As I lay in the ambulance, all muddied and covered in grass, I was wondering why this was happening to me after such a harsh two years. I was really ready to feel exceptionally sorry for myself. I mean, this was to be the “life-changing” trip and here I was down again. The only person I could think of was Adam, for if I had really hurt myself, I would have potentially made him suffer too. Luckily, after it was confirmed I was not likely to be a Natasha Richardson case, we began to laugh and act silly. So a crash can be a blessing. I made a new Czech friend, renewed my faith in humanity (and my resilience),  and got to know my guide, Darius, for about six hours. I became close to two complete strangers.

And it made sense that we became so close —  a brusque Czech nurse stripped me down virtually naked while men were walking in and out of the examination room. When we asked for a gown, the nurse literally threw a small square of  paper towel over my groin. I mean, you just cannot take your self too seriously when there (seem to be)  no other options.

I had to rest the following day, but I still wanted to get to know my new bike-mates, so I joined them for lunch at a farm. I was anxious to get back in the saddle, so the day after, I did just that. There was nothing that was going to stop me now. I rode and rode at such a pace and made it past the town square. At that point, as I was riding down the highway back towards Prague and felt something was amiss. I figured our guides likely wouldn’t want us to be taking the traffic route. After failed attempts to find my way, I called Raphael and asked him where I was. He told me to make it back to the square and at this point, I took enough of a break for this shot. Yet, I enjoyed getting lost. I felt satisfied for having tried to find my way, discovering routes I would not have seen otherwise. So, while no one ever gets lost on a straight road, no one might ever discover something interesting from one’s mistakes, either.IMG_0338

It began to pour rain on us but I wasn’t planning on stopping soon. I was motivated to test my will, my strength, and dag-nam-it, to jump start my twenty pound weight loss (an added benefit I hoped) to shed the guard and vulnerability that became my new weight. I think it’s significant to talk about this for many women. It becomes not only a health issue, and not just a vanity issue, but an issue of what is happening to us on the inside. Some of us pack it on like a shield for the blows we are taking. Sometimes we have no energy to spare when so much of it is being spend on the shock and healing. Yet now, life is about a lot of shedding to find the woman that has been buried and guarded for a while now. Nine months after separation, it is time for a rebirth.

Our group rode the next day in Austria toward the Wachau region. It was stunningly beautiful and a clear day. The hills were very much alive in my lungs as I realized that when I returned back to Toronto, I would have some serious hill-training to do. I made it up the hills, but this is when the stronger cyclists could really catch up to me and where I would fall behind. I’ve had my heart-rate measured many times and I’m lucky that I have an athletes heart (my resting heart rate is just under 60 beats per minute). So I guess I’m telling myself that really, I’m all out of excuses.

I cut my hair before this trip. I don’t know why because I actually prefer it long — more like this:  IMG00300-20081213-1921

I think it was also a part of my shedding. Separation is a good time to re-evaluate everything on your plate. I’ve looked at all the jobs I’ve had to do, and all the stress to determine that the priorities are making sure Adam is okay, managing his programs, team and education as well as focusing on keeping myself healthy and working on that which is important to me. The rest has to drop away in order to do a good job at the things I believe to be important right now. The shedding is for health and well-being. This is not just about being attractive, but it’s about feeling the best I can about myself. This is why cycling was exceptional for me: it enabled me to challenge myself in a way that had meaning beyond just aesthetics.  This is why I wonder why I’ve never taken an active vacation before, and this will surely not be the last time. I’m already looking into hiking this summer, and I’m cycling every weekend now just outside of Toronto.

It has given me more energy for Adam as well. I can’t say enough as a divorced mother, how the guilt can keep creeping in: am I doing enough for him; am I keeping up with his curriculum; am I on top of his team; is he getting the best from me? The sense of obligation for a child, and a special needs child are immense. For seven years, I’ve spent my life completely devoted to my wonderful little boy. And feeling down and out the past nine months, I realize that Adam needs and deserves a strong and happy mother. I may take a bit more time for myself now, but in the end this will benefit him. Already, I’ve taken him cycling. Every day he asks to use his bike. As I become more active, I envision Adam become more so as well. My goal is that Adam can one day bike with me and participate more and more with mom in the activities we can enjoy and share together.

I think it is no coincidence that many men and women who have ended their long-term relationships must take a life-changing trip. Frances Mayes bought a property in Tuscany for heaven’s sake! While I can’t just take off and leave Adam to buy a new property in another country, there is no reason not to expand my own, as well as Adam’s horizons. The feeling of expanding is liberating. Life is not just about Toronto, Torontonians (I have a few things to say about the city I was IMG_0473born in for the people don’t exactly have the “gemutlichkeit” I am more comfortable with). Life that is out there and can put the back here into a clearer and more positive perspective.

When we reached Vienna all sweaty from a bike ride on a 35 degree celsius day, we toured the city a bit and reached the Goddess of Wisdom which I ran right up to for a photo opp, taken my a fellow single lady from Edmonton. I realized that maybe I have finally learned what  others might learn earlier, and others still may never learn at all — that wisdom comes from experience and that the way we succeed in life is by how we adapt and respond to the life that happens to us. We can choose to respond negatively or positively to everything that happens to us. For it happens all right — in sickness, health, disability, divorce, and so much more. These in and of themselves are not failures and tragedies. The tragedy is if we never learn to adapt at all. “Life is not the way it’s supposed to be, it’s the way it is,” says Virginia Satir. “The way you cope is what makes the difference.”

So thanks to my guides, my new bike friends — the incredibly kind people who made my journey something I will never forget.IMG_0401

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.

I’m Too Sexy For…

Filed Under (Autism and Learning, Autism and The Media, Critical Disability Studies) by Estee on 06-07-2009

This month’s UTNE Reader has three superb articles on disability and design and disability and beauty. Long-time model, artist and prosthetic user (as well as designer) Aimee Mullins also writes, Prosthetic Power: Aimee Mullins redefines beauty and the body.

In this photo, Aimee is photographed with prosthetic legs which she fashioned after the hind legs of a cheetah. She runs with these legs and has a dozen pairs of differently-designed and fashionable legs, which also give her five different heights.

In the UTNE article, she discusses how she puts the legs on a table for young children to view and discuss. She asks adults to stay out of the room because “they [children] only learn to be frightened of those differences when an adult influences them to behave that way and censors that natural curiousity.” Instead of being stared at as some kind of freak, Aimee invites the children to explore. Unabashedly, they touch the legs an wiggle the toes, she explains. She says to the children “I woke up this morning and I decided I wanted to be able to jump over a house. If you could think of any animal, any superhero, any cartoon character, anything you can dream up right now, what kind of legs would you build me?” The children shouuted “Kangaroo! Frog!” and other amazing possibilities. Of this she explains, “I went from being a woman these kids would have been trained to see as disabled to somebody who had potential that their bodies didn’t have yet. Somebody who might even be super-abled. Interesting.”

As in autistic people speaking for themselves in any way or means they can, which also incites new ideas of what it means to be capable, valuable and above-all, human, Aimee raises two very important points. First, she has taken the bull-by-the-horn to invite people to explore instead of stare. The stare can be intrusive, full of, often misplaced, assumptions that the disabled person is less worthy and valuable or even capable. The stare can be overlayed with assumptions that an disfigurement is ugly.

Autistic researchers who redefine paradigms of how autistic people learn are no different than the likes of Aimee who not only redefine disability, but refuse to let non disabled or autistic people define it for them. Because Aimee’s disability is more visible, this point may be easier to absorb. Cognitive disabilities are still not understood in the same fashion.

Still, Aimee talks about becoming the architects of our identities, and this holds true for our autistic community.  As a woman who is admittedly still influenced by how I should look and behave and still tortured by it, I still have an awareness of how oppressive imposed identities have on us. She makes note how Pamela Anderson has more prosthetics in her body than she does but that “nobody [calls Pamela] disabled.”

While its true that no one calls Pamela Anderson disabled, I would argue that she is entirely disabled and entrapped in a male view of what a woman should be. We are entrapped also by what we should be as contributors to an economy, which is restricted itself in the ways people can contribute to it.  When women or any person works so hard in order to please others before themselves, they are no longer architects of their own identities, but slaves to an imposed identity.

Having visited the MIT lab when I gave a lecture there a couple of years ago now, I was a priviledged witness of astounding design for the disabled. I believe the article hits the nail on the head as it suggests that this is no longer about accepting disability or discussing potential (although it is frustrating for many of us that the question continues to swirl), but about the potential issues regarding augmentation.

In Graham Pullin’s book, Design Meets Disability, I believe we are witnessing devices and prosthetics for the disabled that are not meek and discrete, but that wears disability as fashionable as anything I’ve ever seen. And I know that MIT works with autistic people in their lab so that devices are in fact useful and empowering — not based on a model of making up for deficiency. It will be interesting, however, to see where augmentation takes us in the sense of designing humanity. Like any other kind of design, there is such potential for abuse. I would view women who augment themselves to extremes like Pamela Anderson a form of self-abuse, and I am admittedly not immune to it.

If sexiness is empowerment, I believe that Aimee is way too sexy for Pamela Anderson anyway, or for that matter, for many men equally dis-empowered by mass-media images regarding the women they are told  should be at their sides.

As a woman full of so-called flaws, can I just sneak in here that well,  I’m just too sexy for the status quo. Or at least I should, like the rest of us, keep convincing myself as such. Aimee certainly helps us all redefine beauty. And that is entirely liberating.

The Perfect Body

Filed Under (Uncategorized) by Estee on 05-07-2009

I thought many of you would be interested in this upcoming conference in Europe:  The Perfect Body: Between Normativity and Consumerism. Here are the details and click here for the website: http://www.esf.org/index.php?id=5256

ESF-LiU Conference
THE PERFECT BODY: BETWEEN NORMATIVITY AND CONSUMERISM

Chaired by:

Dr. Katrin Grueber
IMEW (Institut Mensch, Ethik und Wissenschaft)
Berlin
Germany

Dr. Ursula Naue
Life Science Governance Research Platform
University of Vienna
Faculty of Social Sciences
Department of Political Science
Vienna
Austria

9-13 October 2009

The conference will be held at Scandic Linköping Väst, Sweden – 7km  from Linköping airport and 4km from the train station. Most notably,  the Swedish chain Scandic Hotel´s commitment to sustainability won the  Green Meetings Award in 2008. It is located in Linköping which is the  capital of Östergötland county, situated in the center of a vast open  farmland. It is Sweden’s fifth largest city with more than 136,000  inhabitants and has a long history as a city of learning.

Preliminary Programme

Enhancement as the improvement of desired characteristics (W. French  Anderson) means to focus on abilities, capacities and quality of life.  These categories can be viewed and defined from different value-driven  perspectives which are based upon certain viewpoints on what  constitutes “normality.” Furthermore they are framed by the concept of  autonomy. The general approach towards the issue of enhancement can be  understood in the context of consumerism – the “production” of  enhanced persons as an act of individual freedom and choice. But  another approach, which will be the main focus of the conference, is  based upon the fact that perspectives of disabled persons on  enhancement have been neglected so far. This is important as  enhancement technologies can have different societal and political  implications for disabled and non-disabled persons. The discussion  about enhancement focuses on therapy of something in need of  treatment. But with regard to disability, this debate about  enhancement in contrast to therapy and treatment has to be re-thought  and re-contextualised.

Hence, the conference takes as its starting point the view that it is  socio-politically as well as ethically necessary and important to look  at enhancement technologies from a “disability-perspective.” In the  context of historic developments and the intersection of medicine and  economy, enhancement technologies will be discussed from several  different scientific perspectives. The conference is organised as an  interdisciplinary dialogue and aims to provide an open forum for  discussion and networking. This approach towards enhancement  technologies is necessary, as the field of enhancement is an  increasingly important area of intervention into life and the body.  The conference will be the first international meeting to bring  together Disability Studies, Science, Technology and Society Studies  and Ethics.

The following are some of the questions that will be discussed:

* To what extent and in what way does consumerism influence the  current debate about enhancement technologies?
* Which problems arise from this understanding of enhancement  technologies for disabled and non-disabled persons and consumers of  these technologies?
* What are the consequences of enhancement technologies for  disabled persons?
* Is the “upgrade” an upgrade from old established norms or is a  “new normal body” created?
* Who is excluded by both starting points of enhancing the human  being?
* Do enhancement technologies carry a risk of excluding certain  groups within society, such as disabled persons?
* How can consumerism be embedded in an ethical framework?
* What role does normativity play?
* What new possible forms of exclusion and inequality on several  levels might occur as a result of using enhancement technologies?  Questions such as these make it quite clear that the conference is a  necessary and important way of approaching enhancement technologies  that already have implications for both human beings and for society.

Adam: The Movie

Filed Under (Autism and The Media) by Estee on 04-07-2009

I interrupt the Writing About Children posts to announce this movie coming out in August named none other than ADAM — about a man with Aspergers who falls in love.  You can watch the trailer on You Tube here.

Some of you may have already seen this trailer, but I just saw it for the first time last night while sitting waiting for Cheri to come on the screen (a movie with Michelle Pfeiffer, an ageing courtesan during La Belle Epoch who falls in love with a younger man to her peril).

Anyway, of course I was alerted to its title, not realizing quite in the first dialogue that Adam is a man with Aspergers. It should give us more to talk about with regards to autism and representation in film and other media.

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.

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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.