My Kind of Welcome Mat

Filed Under (Art, Critical Disability Studies) by Estee on 20-01-2010

Some of you know that I have curated a few exhibitions. In 2005 and 2006 I curated two exhibitions in Toronto regarding autism in attempt to question stereotypes. On Valentines Day, I will be moving into my new home with Adam. It’s a cheesy holiday, I know. Yet, if I have to move out of the home my husband and I built together, let the love pour into my new one….very symbolic. My new home is about belonging.

The art I put in my home, as I see it, is an act of love. On a prominent wall in the entrance, leading up the stairs, I’ve placed some significant photographs (significant for me), which were in fact turned down by an organization that I proposed to do an exhibition with because “they may upset people.” I was told that, because most of the photographs were of nude, that this was the issue — not that they were both nude and disabled people. I would argue, however, that they would not likely turn down the Venus de Milo. She’s nude and she has no arms.

_DX02988

I am building my own “outsider” art collection. You will find me always putting the term “outsider” in quotation marks because while it is a recognized term in the art community as a genre unto itself, the implication is that it is a genre on the margins of the art world because most of the art that was produced under this category is “self-taught.” Yet, it is a genre large enough to have created a category, but not quite significant enough, one could argue, to belong to larger art community that participates at Art Basel, Venice Biennale, Dokumenta, and at major private galleries an public institutions. I personally feel the attitude is changing. The term “outsider” has remained precisely as a symbol of how we might have formerly regarded the artists who produced the work as individuals who were relegated to the margins of society. I like to think that we have more respect for individuals today who were treated as “marginal” people.

_DX02988b

Disability, beauty and sexuality and the idea of acceptance and belonging are big issues when considering the essence of identity. On my wall, I have place a photograph of “Scarlett” in an rampaged room (I collected this photo from Europe), along with a series of Diane Arbus-type photographs by other well-known photographers. I compare them to the visionary Diane Arbus because she also studied families and circus people up close and challenged society to revisit ideas of what it means to be human in a time when such individuals she studied were sent to the circus for us to view as freaks. Diane used her camera to move in close, make us uncomfortable and like the freak show, she knew we wouldn’t be able to take our eyes away.

_artwork_images_138991_257064_diane-arbus-1-1

When I put them up I thought of the upcoming house-warming and “renewal” parties (I like to call it that for now as I am in a period of renewal) and the way people are going to react to the photos confronting them in my front hallway, knowing how one institution already responded. Will this upset people; will they think these photographs are weird? I considered. Will it make them uncomfortable? For certain, I anticipate many conversations in my home about what it means to be disabled, what is beauty, what is identity and what makes a sexual being. On the one hand, I wonder about art in the home as typically people put up neutral things — should I have put up an abstract or a bunch of flowers?

Yet in my home, I have an autistic son. I live with difference and the beauty of his difference every single day. Not only do I want my son to see people with disabilities as humans — but beautiful humans and I want him to see himself as “beautiful,” if beauty be equated with value. I am often struck by how “beautiful” people in wheelchairs are still regarded more than average-looking people in wheelchairs. We often consider it “a shame” that “such a good-looking person” be confined to the wheelchair, as if the value of the person is now cut in half.

The people in these photographs are a mixture of beautiful and average-looking people with a leg missing, non-functioning legs and average-looking people with “mis”-shaped faces and bodies. I think to question beauty is important — from manufactured beauty to the beauty inside a person. Christine — the woman with one leg — is also reflected from a mirror on my fireplace mantel on an opposite wall. Everyday as I chastise myself for not being thin enough or young enough, I hope to be reminded that I am more than what I appear to be. I’ve advocated for Adam all of these years and all of these people, including Adam, have reminded me to be less judgmental of myself as a woman living in graceless times — where we carve ourselves under knives and lasers to become something “more beautiful.” I am not attempting to chastise the entire industry of prosthetics or plastic surgery because the industry has also helped a lot of people cope with events like breast cancer, burns and so on. But I hope that in raising the question we can all see how complicated the body has become. As a woman, I’ll admit this is a great area of conflict for me and my emotions can’t keep up with my head.

So, I had to question who else might put these works front and centre in their home (which is why I’m writing this post). It’s fine to look at such images at exhibitions and in book, but the home, where we manifest our identities may be something different. I’m trying not to self-adulate, because I found myself questioning. I know that some people will not understand and may initially feel uncomfortable (the precise opposite of what we try to accomplish in our homes as we want to welcome people to them). Across from the photos, by the way, sit two paintings that I purchased from Larry Bissonnette — a well-known autistic artist, and my two Jonathan Lerman pieces (also an autistic artist) are on the stairwell going down to the basement.

I have a series of thoughts and hopes, perhaps, as I put the work up. First, it will prompt discussion — some of it may be difficult, I understand. Second, I want to question stereotypes of not just disability but what is beautiful as we (especially me) spend many dollars and energy seeking to look more perfect and defy our age. And last, I actually want people in my home to let their hair down. I want the judge in everyone to disappear.

In my view, it’s the best welcome mat money can buy.

Adam’s Delicate Line

Filed Under (Adam, Art, Autism and Intelligence, Autism and Learning, Communication) by Estee on 19-11-2009

MaountainChairIt's a Butterflyrose and Peacock

As a curator of art I have a special interest in “self-taught” art, otherwise known as “Outsider Art” or “Naive Art.” I find these latter terms unfortunate if not unnecessary and, noting my bias, degrading as terms to describe the work, typically, of challenged individuals. In the Art World, the term was used to create a category of art because it did not seek a point of reference from within the “higher” art world.

This post for me is thrilling. Today’s Parent magazine in an article called “Is It A Learning Disability?” , suggested that children with learning disabilities (LD’s) ..” don’t draw,” the caption said, “they scribble.” They is used as yet another “outsider” term, using the “they” as a foreign connotation. I retorted at how important any human marking is, a scribble or a sun. Adam’s motor planning issues makes holding a pen or pencil very difficult. He could draw letters lightly when he was very young and his first “picture” was a happy face with long hair when he was six years old. When I asked him who it was he said “mommy.” Of course that stays in my treasure chest forever.

I like to draw and I’m quite average at it. This past summer, I spent a few hours with Adam drawing what was around us at the cottage we rented, and I tried to teach him how to paint by numbers with a watercolour set — to “stay within the lines.” So counterintuitive is the paint-by-numbers set to me, but I noticed Adam’s willingness and effort to gently use a small watercolour brush, and his keen interest in painting. It also doesn’t hurt that one of his grandmother’s is a painter, his grandfather is a photographer, and his half-brother, a master at etch-a-sketch, not to mention his other artistic pursuits. Adam is interested in all of their work and I’m certain they have all imparted their own abilities to him.

I was not expecting these drawings passed to me from school the other day because I guess we can never know if or when we can expect things to happen, and it wouldn’t be anything I’d force upon him. Adam draws, as of this week, by his own motivation. He suddenly copied pictures from books and I’m utterly breathless at his line and his attention to detail. He told his aide what the pictures depicted and you can see her handwriting — a verbatim record of what he said. From a developmental perspective, I suppose you could say he is seeing the “whole picture.” His attention to detail, bearing in mind his motor challenges, seem remarkable particularly when one’s child has not been able to express themselves easily.

Art can tell us a lot about what a person sees, how they see it, and how they can express it with certain challenges. As I was always certain that Adam could “see the whole picture,” I post here, I suppose, what society needs and what it likes to chew on, which is the sad part of being a part of such an achievement-oriented society. But let’s for a few wonderful moments just savour how beautiful his lines are — how delicate and careful.

Maybe we all need to be as delicate and careful when discussing the abilities and challenges of all people. We may not all become artists, we may not all talk, but it certainly does not mean that we do not understand or have anything to say.

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.

—-

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.

ads
ads
ads
ads

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.