Review of Committed: A Skeptic Makes Peace with Marriage, Elizabeth Gilbert
Reviewed by: Estée Klar

I’m a separated single mother. Last night, having dinner à la Sex in the City with my three long-time girlfriends, I realized that I am the only truly single lady at the table. My girlfriends may have had the recipe for relationship success right all along — they never, ever got married. They may be single, but they are all in long-term committed relationships.

This is not to say that I’m against marriage now just because I am separated, but since I feel I have not yet been successful, and in fact — let me borrow Gilbert’s own words –  “gutted” by the entire process, her new book may have come to me in the nick of time. Perhaps not just for me. Judging by the hot topics of discussion out there — like “All Kinds of Families” upcoming on television with Rosie O’Donnell,and the hit HBO series, Big Love, and Desperate Housewives, well, Gilbert definitely knows what is on our minds. So long Ozzie and Harriett, Little House on the Prairie and Leave it to Beaver; these times…they have changed!

Gilbert acknowledges that she is no scholar of Western marriage, but her research makes us rethink our beliefs. Woven in between her own personal journey — falling in love with Felipe at the end of her Eat Pray Love journey, living with him on his three-month visas into the U.S. and vowing never to marry each other –  we learn a little bit more about her and how and why we think such things about finding soul-mates and marriage partners. “Sentenced to marriage,” because her partner Felipe will finally be deported out of the United States if they do not marry (no more three-month visas allowed), Gilbert decides to research almost out of terror. She has already been divorced. She has no children. She writes, she travels. She seems to covet her freedoms. But she has also fallen deeply in love with Felipe.

So she embarks on her next quest which manifests in this newly released book. Expecting the world from our partners to “make us eternally happy,” she cites an important, maybe crippling, contemporary theme — that the only quest worthy in life is to find happiness. “It’s the emblem of our times,” she says. “I have been allowed to expect great things in life. I have been permitted to expect far more out of the experience of love and living than most other women in history were ever permitted to ask. When it comes to questions of intimacy, I want many things from my man, and I want them all simultaneously….We Americans often say that marriage is ‘hard work…’ but how does marriage become hard work? Here’s how: Marriage becomes hard work once you have poured the entirety of your life’s expectations for happiness into the hands of one mere person. Keeping that going is hard work.” (p.48).

Of course, Gilbert can’t be excluding the same expectations of men who stake their happiness on a woman. Honestly, if I were to wager an un-researched guess, men have more difficulty in our culture being without a woman than women do without a man. If it’s a popular topic of discussion of our times, it does not belong exclusively to women-kind. But she does note that her father seemed to have fewer expectations of his 1950’s marriage than her mother: “…while it’s true that my mother has given up more of her personal ambitions in marriage than my father ever did, she demands far more out of marriage than he ever will. He is far more accepting of her than she is of him.” (p.197). So while Gilbert seems to identify in part the “shackles” that women find themselves in when they enter marriage, she also acknowledges that it can also be a repressive tool against men. “It’s an ancient truism across countless different cultures that there is no better accountability-forging tool for an irresponsible young man than a good, solid wife.” (p.198.) She cites Robert Frost who says, “in traditional societies single young men have a global reputation for squandering their money on whores and drinking and games and laziness: They contribute nothing.” (p. 198). But ask a thirty-something year-old single man, and I’m not so sure he would or wouldn’t agree. As woman have changed, I am hopeful that, since Robert Frost’s time at least, men have too.

Among the Hmong people she sets out to interview, where marriages are arranged, the women she attempts to probe about love don’t seem to have any expectations of their men. It is set up more for civil function and child-bearing, and the woman remain with the women during their days, and the men — well they are off doing God knows what. When Gilbert asks the Hmong women about how they felt about the subject of marriage, she was greeted with laughter and confusion. Of the Hmong grandmother she said, “Neither the grandmother of any other women in that room was placing her marriage at the center of her emotional biography in any way that was remotely familiar to me. In the modern Western world, where I come from, the person whom you choose to marry is perhaps the single most vivid representation of your own personality. Your spouse becomes the most gleaming possible mirror through which your emotional individualism is reflected back to the world.” (p.35). In Canada, where the person we link arms with is an important choice that reflects who we “are,” whether I like the idea or not, I would have to agree.

Gilbert’s chapters are separated to many aspects of marriage: Marriage and Surprises; Marriage and Expectation; Marriage and History; Marriage and Infatuation; Marriage and Women; Marriage and Autonomy; Marriage and Subversion and finally Marriage and Ceremony where she ultimately makes peace with her “life sentence;” albeit with a lot of soul searching and research! It seems to me that she finds her success in being “separate” while also devoted to and a part of Felipe. It makes me realize how utterly lucky I am to have time to myself, to be alone at this point in my life before launching into something too fast and too soon. Maybe I can call it my Eat Pray Love kind of year — the eating and praying part for sure and the love I am gaining for myself as well as a recognition of an enduring love for my son. Maybe we all need at least one of those years in our lifetimes. It seems to be our fear of being alone and that stigma prompting the fear that may be the saboteur of a peaceful path to coexistence.

That stigma of being single looms. Just a quick look at the amount of on and offline dating services that exist out there, and we can see it. We are yearning for connection — looking for that lost half of ourselves. It’s not unfamiliar that concept — our “other half,” our “soul mate.” But is there such a thing? With Hollywood romance pounding the message into our brains that there must be one soul mate out there for each of us, we’ve certainly come to believe it, and all things Hollywood must be rigorously questioned.  Yet instead we go out into the world and look for our mates as if it is our life quest. Gilbert says “our choice-rich lives have the potential to breed their own brand of trouble.” (p.45). Apparently, as soon as we abandoned arranged marriages and began to choose for ourselves, divorce rates sky-rocketed. As I read her book thinking of our freedom to create different “kinds of families” that we either inherit by default because of circumstances, or choose, I consider that the reader will be left with the question: so which is better; to be able to be free to choose, to remain single or to go back to arranged marriages? Gilbert would opt for freedom, but not of the escapist kind.

When women began to have equal rights and opportunities, they no longer had to remain in bad marriages. Then came the myriad of choices, for better or for worse. While  Western marriage is comforting in the sense that it eliminates all choice, it has, as I’ve hoped to illustrate via Gilbert’s book, its own set of issues. Religion imposes a civil and “moral order” (religion assumes we are sheep that need guiding — another power schematic) — a role that today our lawyers deal with when we get divorced: how property and children are divided. After all, the State doesn’t care about our broken hearts. Gilbert discusses how women gave up everything to be in marriage in history – and let’s face it, to a large extent still do in modern times. In Europe’s history, cites Gilbert, “the legal notion of coverture — that is, the belief that a woman’s individual civil existence is erased the moment she marries…a wife effectively becomes ‘covered’ by her husband and no longer has any legal rights of her own, nor can she hold any personal property…Coverture was a French legal notion that spread to England as late as the nineteenth century. British judge Lord William Blackstone was still defending the essence of coverture in his courtroom, insisting that married women did not really exist as a legal entity. ‘The very being of the woman,’ he wrote, ‘is suspended during marriage.’” (pp.65-66). Woman eradicated as humans? This is not something I enjoy reading about, but I believe it  still exists in the deepest caverns of our collective minds. It plays out in marriages, in court rooms and infects the behaviour of many men and woman today — that our worth is hinged on marriage and men alone.

Just going out with many women, and seeing more middle aged women going out on the town with each other, I’m not altogether happy with what I see. Not only do women just want to go out — and now they can without the man which is of course, great and something we now take for granted — many of us womankind are still fiercely hunting. “MILFS,” (a sexist, unfortunate term meaning “Mothers I’d Like to _ _ _ _”) we in a certain age-group have now earned such derogatory terms — “Cougar” being another one of them. You can see it in the eyes — checking out the men who walk into the room, trying to look coy with that red-coloured martini in their hands (wait..I like red-coloured martinis), probably hoping with bated breath that some guy will approach her. While many women might say they have earned the right to employ on the goose what was done to the gander, I have to wonder if women are out really enjoying themselves, or if they are seriously hunting for a man for the sake of increasing her self-worth. I’m not suggesting that woman are solely to blame here, as She has been the object of sexual oppression for generations. Yet why perpetuate the cycle?

Without the pressure of man-hunting, the best possible relationship and the ones I really value are those of my girlfriends — married, unmarried, gay, and yes, even yearning. None of us are alone with the very same questions Gilbert raises — “sometimes life is too hard to be alone, and sometimes life is too good to be alone.” (p.81). Doesn’t that just say it all? Now single, I am even aware I may now be a threat, possibly, to some of my married friends. It even shocks me to encounter married women who think it is so wonderful to be single, so easy — as if I can party all night long. It’s all very ironic because none of it is easy. I may represent what perhaps some married women fear they may become and representing that comes with a price that has saddened me to pay. A single gal can’t always win with the married type. It seems married or not, we all want to believe the grass is either greener on the other side, or that it’s as scary as hell. And believe me, it really is hard the first year of transition from married to single life! Don’t let my going on and on about being single fool you for a moment. I cried for six months straight!! Nothing can spare us from the heartbreak following the break-up or a loss of a long-term partnership or marriage.

What I starkly realized whilst becoming single (it’s a process), is the stigma — that I am less valuable if I am not attached to a man (one of woman’s greatest fears). I have also learned that this idea is farthest from the truth. As I grow and spend about as much time thinking about this topic as Gilbert has, being alone for a long stretch in one’s life without jumping into other people’s beds in order to escape loneliness is probably the most important thing we can do at least once in our lifetimes. And we all will — our spouses will die, our partnerships will break up. We simply have to learn to live well with and happily with ourselves. As a single person and a person who may enter any future relationship, it is most important to learn to value oneself first in order to be valued. One way to value oneself is to spend time alone…and not fear it. Elizabeth Gilbert protects her freedom, it seems for similar reasons. Like me, she enjoys traveling on her own. Like most women today, we try to find that safe place where we can have a partnership while also maintaining our need to pursue our own dreams. Ironically, even with all our hard-earned freedoms, it still can seem like an extreme sport.

Gilbert can get us really thinking with the amount of thought she and Felipe pour into their oncoming nuptials. For me the finest chapter was on Marriage and Infatuation. “History teaches us that just about anybody is capable of just about anything when it comes to the realm of love and desire.” She puts new words to the harsher adage “all’s fair in love and war.” It seems to me Gilbert, despite all the research, came up with the answer mid-way through her book about what makes partnerships last or not, and as I read this I considered by parent’s marriage of forty-six years. I witnessed them building their marriage like maintaining a beloved house. Walls had to be repainted, dying trees cut down and replanted, and some rooms eventually completely renovated. It was constant work and in between they lived out their frustrations and their joys. They are products of this historic belief system as much as my generation is, and future generations will be. Something in them and maybe even about them, I don’t know — they just stuck it out. Who knows what those factors were as they traversed life’s trials that bonded them together or nearly tore them apart. These are the intimacies I will never know. But, it does make me realize that to be in a partnership is to enter a contract that is tacitly renewed every single day. And yes, maybe that is supposed to be at times, “hard work.” Expectations or no expectations, it just can’t always be easy.

Gilbert uses the work of Shirley P. Glass, a psychologist “who spent much of her career studying marital infidelity…[whose] question was ‘How did it happen?’” So as I read the following paragraphs, I thought of the “house” with the strong foundation my parents built:

“The answer, as Dr. Glass explained, is that nothing is wrong with a married person launching a friendship outside matrimony – so long as the ‘walls and windows’ of the relationship remain in the correct places. It was Glass’s theory that every healthy marriage is composed of walls and windows. The windows are the aspects of your relationship that are open to the world – that is, the necessary gaps through which you interact with family and friends; the walls are the barrier of trust behind which you guard the most intimate secrets of your marriage.

What often happens, though, during so-called harmless friendships, is that you begin sharing intimacies with your new friend that belong hidden within your marriage. You reveal secrets about yourself – your deepest yearnings and frustrations – and it feels good to be so exposed. You throw open a window where there really ought to be a solid, weight-bearing wall, and soon you find yourself spilling your secret heart with this new person. Not wanting your spouse to feel jealous, you keep the details of your new friendship hidden. In so doing, you have now created a problem: You have just built a wall between you and your spouse where there really ought to be free circulation of air and light. The entire architecture of your matrimonial intimacy has therefore been rearranged. Every old wall is now a giant picture window; every old window is now boarded up like a crack house. You have just established the perfect blueprint for infidelity without even noticing.

So be the time your new friend comes into your office one day in tears over some piece of bad news, you wrap your arms around each other (only meaning to be comforting!) and then your lips brush and you realize in a dizzying rush that you love this person—that you have always loved this person! – it’s too late. Because now the fuse has been lit. And you really run the risk of someday (probably very soon) standing amid the wreckage of your life, facing a betrayed and shattered spouse (whom you still care about immensely, by the way), trying to explain through your ragged sobs how you never meant to hurt anybody, and how you never saw it coming.

And it’s true. You didn’t see it coming. But you did build it, and you could have stopped it if you’d acted faster. The moment you found yourself sharing secrets with a new friend that really ought to have belonged to your spouse, there was, according to Dr. Glass, a much smarter and more honest path to be taken. Her suggestion would be that you come home and tell your husband or your wife about it. The script goes along these lines: ‘I have something worrying to share with you…” pp.109-110.

While this piece of information hit me like a brick from that shattered house on my head and comes in the middle of her book, the rest of her book is worth reading too. I thoroughly enjoyed (obviously) reading about wo/man’s journey with marriage and where our beliefs may have derived. Most of us, even if we are good at being single, want friends and partners in life. We are, I believe, built to share. While “love based unions make for fragile tethers…maybe divorce is the tax we collectively pay as a culture for daring to believe in love.” (p. 83). I have learned while we need to have choice and freedoms, with them come many responsibilities — for nourishing ourselves and others and treating each other with respect and kindness. And this also grows and changes, like the institution of marriage in our culture, with that tacit contract. Maybe the contract, like people, get better with age. Maybe we come to understand the fragility. Maybe some of us learn, in this age of free expression and openness, that there are some things in life that should be left between two people. Gilbert certainly reminds us of the nature and importance of privacy and the need for a couple to really discuss and think about things, instead of expecting them.

Gilbert, after soul-searching this serious marriage business, finally marries Felipe in the house she buys in New Jersey (which ironically happens to be a converted church) when Felipe’s visa is finally approved. As they utter their vows, a dog suddenly lies auspiciously between them (which just happens to symbolize fidelity). I envision all the people out there writing their long list of pros and cons about relationships. I might be one of them one day. Yet very much like Elizabeth, I still believe in love.

I do, I do, I DO!

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.

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.

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.

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.

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.

“You didn’t see me.” That must be the most popular line of relationship distress we’ve all ever heard and the reason for much heartache. With those who are closest to us, we yearn to be seen meaning, we want to be seen for who we really are — all that vulnerable, squishy stuff inside of us that we want others to take in their arms and hold gently.

What does it mean to “be seen?” I mean, out here in Miami there is no lack of men and woman stripping nude, or nearly nude, wanting to be seen. Hair coiffed just so, a pair of trendy sun glasses and a spray-on tan, and off they go into the public to show off with their heads held just so –  pretending as if they are not aware that others are staring. These people may want to be seen all right, but they want us to pay attention to what they want us to see. It is a far cry from being seen.

If you think this post is about relationships it certainly could be. This is the meaty stuff of what makes or breaks many of them and why life is so hard sometimes. In his book Double Take: A Memoir, Kevin Michael Connolly travels to more than seventeen countries and captured 33,000 photographs along the way about the way people see him. Born without legs, “being seen” takes on a whole new meaning.

The photos in his book titled The Rolling Exhibition (named after his rolling around on a skateboard: “This Is A Legless Guy’s Skateboard. Please Please, Don’t Steal” he writes upon it), have been featured at museums and galleries around the world. They are taken from his perspective, low to the ground, (he is lying on his back when he takes some of them) with people staring down at him, which of course has a pent-up meaning in itself when talking about disability and the way people stare. They are passer’s by, whisking past him and he has caught their fleeting yet loaded glances. How could one describe them? Curiousity? Fear? What does it mean to be a subject of a stare when you have not intentionally invited it, unlike those plastic Miami boobs?

(Interesting to go off on a tangent here to recognize that those fake boobies are in the same sense a prosthesis that we admire rather than fear. Of course, we have the same curiousity and sometimes repugnance at the fake boobie because we understand that some person has intentionally gone under the knife and altered herself to make her more attractive for sex and they don’t look quite real. So we stare to make up our minds, or stare because we are just so darn curious. Aimiee Mullins, who has designed for herself a series of gorgeous looking prosthetic legs that can make her various heights has also noted the lack of difference between her legs and the many prosthetics men and women now use by choice in order to alter their appearance).

Like the performance artist Petra Kuppers, who with her disability stages performances that also investigate the stare, in fact invite it, Connolly has invited it by his being born with bilateral amelia (meaning born without limbs). It’s an unintended invitation, like being born into royalty with paparazzi following your every move. You don’t ask for it; it’s just sort of a birthright and a burden, whichever way you look at it — they seem to go hand-in-hand.

What I love about the camera is that it’s like staring back.  Being a photographer means you are like a voyeur, capturing other’s most private moments. One simple glance or expression, as they saying goes, captures a thousand words. Connolly has taken the stranger’s stare and turned it back on them. It’s rather empowering to turn the investigated into the investigator.  If I were Petra Kuppers, I’d be performing. If I were Estee Klar, I’d be writing. It’s what people who need to express a point, do. The camera captures private moments the way people stare at many disabled people who cannot fend off the stare. Often, we are intrepid lenses unwelcome in private moments. Yet Connolly, like all people who put their expressions out into the world has a conscience as he reflects in Sarajevo:

“What’s wrong,” [Beth] asked softly, her hand on my back.
“I don’t think I can shoot this anymore.”
“Why not?”
“I think I’m hurting people.”
“How?”
“People think I’m a beggar of someone who was hurt here.”
“Well, yeah. Maybe some people. But that doesn’t make you any more of a beggar than you were a month ago. You and I know who you are, so don’t let it get to you.”
“Yeah, but I’m using them for the photos.”
“So? It’s not as if their entire day is ruined or anything. You’re getting too wrapped up in everything. If you stop shooting and just quit, you’re going to hate yourself forever.” (p. 198)

It’s a question of art to a certain extent — this idea of truth-telling and who and what moments we use as subjects. When we take our personal experiences and use others to reflect a truth, are we doing unto others as they do unto us? The discussion about staring at people who look different or disabled is a sensitive one, and the more others can see themselves, the more we all can understand the effects of what we do everyday — those things we think are harmless like taking about an autistic person like they are not present, or criticizing the family, the parent, or autistic individual who needs to fight for things that come automatically to other families like access to education, services, and just acceptance into our communities without having to talk about autism, acceptance and the like. From a personal point of view, although I have to end up talking about it, I don’t want to talk about it everyday. We want (and deserve) to live our lives with autism as does any other person who wants to live their lives in peace, without having to justify the reason why they deserve to be here — why they “have” autism, where it “comes” from, or why they should have access to that school or that aide.

As a writer who likes to write about certain instances in our day-to-day lives — from the person who stares at Adam’s wildly flapping hands, to the friend whose account I once used about, when I was new to autism writing and the idea of “normal,” her desire to change the appearance of her child’s ears (I used the story about our quest to make our children appear indistinguishable and in Adam’s case, it’s simply impossible) — it’s really difficult to write about these real-life events. Yet there is a need for many of us to write, or make photographs and art, about them. It seems that everyone is sensitive, but the context in which these accounts are written are important. The consciousness of  not wanting to hurt other people, seems to me, is a must in the making of art, not that the hurt won’t be there. In the world of black-and-white autism politiking,  there is a need for education through thoughtful literature, memoir, art projects like Connolly’s. These projects help us understand life from a different perspective, and because it has been “done to him,” Connolly has a need to state his sensitivity. The outcome of his work is worth it. Like art and writing, the poignant point is made when it is evident that the artist has weighed the cost and the benefit of telling true stories.

In his Epilogue, Connolly reflects how the looks, no matter how experienced or hardened we become, still effect him:

“As these pages show, my lack of legs has generated a lot of strange looks. Those stares still get to me sometimes. Sometimes I wonder if I should explain myself to the people who shoot a sad direction in my direction. Maybe, if it would relieve that moment of guilt or pity from their lives, it would be worth it. But most of the time, I let those stares slide off my back. A lot of times, I don’t want to talk about my lacking legs.

Maybe it’s because dialogue has a tough time blooming when it’s about negative space. There’s only so much you can discuss about something that isn’t there, and isn’t forthcoming. And rather than try to make a bad riff on a Beckett play, I’d prefer to end this page with what I do have…

So maybe the reason I’ve been so frustrated at times by the question What the hell happened to you? [what caused your son's autism? -- my interjection here] is because it’s simply the wrong one to pose. It focuses too much on a physical circumstance based on a singular point in time, rather than on all of the influences and characters that followed.

Perhaps Where the hell did you come from? is what we all should be asking.” (pp.226-27)

I would agree. It would be nice to be asked that question rather than “what happened” to us, even though autism is certainly a part of our lives. The question is, Do you see me? For Adam and I, and Kevin Michael Connolly, it seems, it means the whole package.

—-

Kevin Michael Connolly, Double Take: A Memoir, New York: Harper Collins, 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.

There are some things that silence me for a few moments. The death of a child, the poignant line. Vicki Forman’s This Lovely Life: A Memoir of Premature Motherhood does both. About the premature birth of her twins, the death of one child and the survival of her son with multiple disabilities, Vicki must navigate life’s toughest challenges. Just the first paragraph alone will be enough to make you gasp, sit silent and want to read the rest of her book:

“I learned about grief during this time. I learned that no matter the true temperature, grief made the air crisp and cold; that it caused me to drive slowly, carefully; there was very little I could eat. I learned that I didn’t notice things until they flew out at me and that most stories and books and news articles were unreadable, being accounts not of the events themselves, but of me. Of what I had lost and would never have again, of what I had once allowed myself to want, the things I used to love. Of small consolations no longer available. I learned that my heart could stop and start a dozen times a day and that my throat felt so sore and tight I often had to swallow air simply in order to breathe. The world receded; everything took place in slow motion and was viewed as if down the wrong end of a very long telescope. So much was unfamiliar that if I was asked my name, I had to think for long moments. ‘Grief is a visceral process of disengagement,’ a friend said. In my grief, old versions of disembodiment became a cruel joke. You thought that was bad, not being able to walk into a roomful of strangers without disassociating or turning remote and distant? That was nothing. Try this. Try heart-stopping, immobilizing grief.” — Vicki Forman, This Lovely Life, Houghton Mifflin Harcourt publishers, 2009.

Tom Bissell, who writes the forward describes Vicki’s journey well: “She does not claim she is always correct; she sometimes expresses anger at certain doctors, and she occasionally behaves in ways that some readers may find appalling. But just as this is not a depressing book, it is also not an angry book. It is a book filled with love and wonder — enriched by the kind of grief that those of us who are not parents cannot imagine and those of us who are will not want to.”

I have come across Guy Dove’s review of Wendy Lawson’s Concepts of Normality recently (after being away for a while), and have to defend our positions.

Wendy Lawson’s book is about regarding individuals with autism with respect and dignity and questions our idea of what is “normal” when dealing specifically with autistic people. It is a wonderful thesis based upon how society views “normal.”

Of the “guest author’s” Dinah Murray and myself, Dove states:

The guest authors, on the other hand, seem openly hostile to such parents. Murray sarcastically remarks, “Some Others [members of the typical population] weep and moan and deplore their autistic child’s existence; they wallow in self-pity and congratulate each other on how Truly Dreadful it all is.” This statement illegitimately paints a diverse group of people with a broad brush and seems to be little more than a mean-spirited attempt to silence critics. Klar-Wolfond is not much better. In her discussion of the admittedly questionable practice of using scientifically unsupported biomedical therapies, she offers the following rhetorical question, “And to make them what? — better at maths, quicker on the sports field, or well-mannered?” This is doubly insulting to parents of children who have tried such therapies. First, it belittles their concern. The suggestion is that parents are merely trying to get their children to “act normal” when in fact they are often trying to ameliorate severe challenges with respect to communication and social interaction as well as other difficulties including debilitating anxiety, painful gastrointestinal problems, insomnia, and even violent behavior. Second, it denigrates their reasoning. Many parents who try such therapies agonize over their decision. Although some of these therapies have potentially harmful side effects, most do not. When Klar-Wolfond lumps together treatments as diverse as supplements and detoxification therapies, she is being both misleading and unfair.

To me it is a response not terribly unfamiliar. Dove discounts Dinah’s perspective of being an autistic individual herself and myself as also being a parent who “agonizes” over decisions. It is precisely to that point I think worthy of addressing and why I wrote the piece in the first place.

Parents of autistic children are being eaten. A plethora of information does not constitute proof of what causes autism or what may assist with the symptoms of autism, and even those symptoms may not be a direct cause of autism but autism may cause a more heightened reaction to an ailment. Come to my house when Adam has a cold and instead of a tired child, he may be running around the house.

Yet the rise of speculation has lead many (clinicians and those in the medial profession included, and conversely thanks to the researchers who have endeavoured to provide the real proof to many speculations out there) to sell their products to the risk and danger of the autistic child, feeding upon the desperate worry of parents – and most of the time these parents are new to autism thus more open to trying anything to “helping” their autistic child recover.

I can’t help but chuckle and Dove’s choice of words. “Hostile” is a descriptive word typically ascribed to women who tend to take a critical stance. The hysterical, hostile woman is no more a stereotype than the idea that autistics are less worthy and in need of a cure. Yet Dove, to be fair, is of the mindset, it appears, that these remedies are somehow safe and that parents are only trying to make the best choice. It is here where I think he misses not only the point, but an opportunity to engage in a discussion of how we come to push unproven remedies that risk the safety of our children. The very idea that our children are “not normal,” is the premise for trying to recover them, which is why Dr. Lawson chose the guest author essays for her book. The attempt, by Murray, Lawson and myself, is to identify this preying upon parental worries, not demonizing parents. Yet all of us have to step back and take a close look at what we are putting at risk and why. Further, Dove’s defense of parents instead of the autistic people who are much more vulnerable is sadly typical in our age. It is this stereotype we are challenging and we need to point out the irony of critiquing the view of the autistic person who implores a different view.

Yes, all parents agonize over their decisions. Where is the mechanism by which quackery is separated from scientific proof? As a parent, I can relate to the agony of putting my child on ANY medication (and this is NOT related to his autism but to his overall well being and health). The non acceptance of autism as a way of being, which is precisely Wendy Lawson’s point, has driven many parents to put their children on hundreds of unproven remedies at the same time.

The question is not hostility, Professor Dove. It is a question of having a critical mind precisely when emotions are the driving force behind the autism “hysteria.” For any parent or autistic person willing to engage in this discussion, we are in turn called “hostile?” Have you witnessed the hostility by non autistic parents against autistic individuals who are trying to be seen and heard?

I can tell you as a parent and a friend to many autistic individuals, there is a great deal of agony, indeed. The agony is in pushing them to recover from autism, not recover from stomach pain. Whether the two are linked, no one can really say. The evidence is still very anecdotal. Clearly, that pain should be remedied, but not at the risk of administering hundreds of medicines simultaneously in order that our children can act more “normal.”

I gather being critical is less important than putting our children’s health and safety at unnecessary risk. As for Adam, I couldn’t bear seeing him in pain. Of course I would seek counsel from his doctor and endeavour to remedy his pain. It would be no different if I had a non autistic child. The point is autistic children are being put at much higher risk precisely BECAUSE they are autistic.

Critical Disability Studies is a growing field of study which studies the history of disability and contemporary disability issues in the humanities and the sciences. If you do not have the time to attend full time studies, there is now an online option:

http://www.cds.hawaii.edu/main/ads/certificateprogram/

http://www.cds.hawaii.edu/main/downloads/news/2008_2009/pdf/DistanceLearningCourses.pdf

I can personally attest that the study is eye-opening and fascinating even if there is no person with autism or another disability in your life.

By 2012, accommodating disabled persons in Ontario will become mandatory for all non profit organizations. Accommodating people with disabilities will be enforced, and this will make it necessary for all not for profit agencies — which includes hospitals, schools, religious organizations, transportation services and the like — to be able to utilize and/or make available Assistive Devices for non verbal individuals as well as other equipment, environmental provisions and the deliverance of the “products and services” (which entails what we commonly refer to as  accommodation) for a diverse population of individuals with various needs.

Under the Ontarian Accessibiltiy Act which became law in 2005, non profits will all have to comply by 2012 and other businesses by 2025. The use of such terms as “customer service,” positions the act to read that it requires to view our disabled population also as clients and consumers — the latter term which, in our current economic belief and behaviour, renders Ontario’s disabled as more “valuable” citizens.  It is true that the disabled are important part of our society and contributors to our economy, and it makes sad but true sense that our legislators have to enforce the accommodation of all our citizens by using these terms. Economic terms. We deliver a basic human right via “customer service.”

Now that it is soon to become mandatory for an area that I’m particularly interested in — schools — I wonder why there is continued resistance in Ontario to use AAC (Assistive Augmentative Communication).  Adam needs the computer in his school to communicate his understanding of the concepts being taught. It seems like simple ABC to me. In this day and age where technology is common and relatively inexpensive, and where autistic children can indeed excel, it makes little sense that we have to make enforceable the ways and means that autistic children can participate and be included in the classroom and with their peers. This argument goes beyond devices and right down to understanding how autistic children can learn and respond and how the format of the lessons and teaching styles need to be delivered. For if our children are now viewed as valuable “clients,” then one would think they should certainly be entitled to no less.

I for one am working with the act and terminology to encourage service providers unfamiliar with accommodating disabled people in Ontario to adapt and include. Once we can help others to understand that disabled children do not “pull their other children down,” but in fact propel them forward both as compassionate human beings as well as academically, we can create more just classrooms. “Research shows that for typical students in inclusive classrooms, academic performance was equal to or better than that of general education students educated in noninclusive classrooms.” (Exceptional Children, 64: (1998) 239-253) “And, contrary to the worries of many parents of typical students, the inclusion of students with severe disabilities (when there was appropriate support) did not reduce teaching time nor create many interruptions.” (Exceptional Children, 61,3 (1994): 242-253).

Yet the burden of proof will remain heavy upon us for some time. There is not really a day that we do not confront resistance to inclusion (or “barriers” which is a commonly used term), in the name of safety, medical needs, the guise of inclusion under the term “mainstreaming,” competition and more myths about why special needs children should not be included in our communities, schools and daily life. It is up to us to hold steady with this burden  to keep up the research and the dialogue about why inclusion is good for everyone.

As Adam goes to an inclusive school, it seems logical that we learn to teach by teaching and we learn to include by including. Legislation or no legislation, we will still have a lot of work to do in order to help others understand autism and autistic people as valuable and entitled in their own rite.

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.

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 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).

There was a time when I was chastised for comparing certain persons of a certain culture in their wearing of a sign to classify them.

I know that I might give Adam something he can hand to someone one day if he cannot talk. Lots of kids where pictures on their belts so they can easily communicate to another person, or they might have one of those nifty wallet cards telling someone they are autistic. People with allergies or other medical conditions (I am not classifying autism as a medical condition) where Medicalert bracelets. So is this helpful? Or is the road to hell paved with good intentions?

What do you think?

Indonesia asks disabled pedestrians to wear signs
Transport experts said the law was preposterous. -AFP

Tue, May 26, 2009
AFP
News @ AsiaOne

JAKARTA, May 26, 2009 (AFP) – Disabled pedestrians in Indonesia are required to wear signs identifying them as handicapped under new traffic regulations passed unanimously by parliament on Tuesday.
Amendments to the Traffic and Transport Law state “handicapped pedestrians must wear special and clear signs which can be easily recognised by other road users.”

The lawmaker in charge of the committee which drafted the amendments, Ahmad Muqowam of the Islam-based United Development Party, said they were designed to protect disabled people from road accidents.

“This is a humanistic act. It’s for their safety on the streets,” he told AFP.
Asked what the signs should read or where people should wear them on their bodies, he said this was up to the government to decide at a later date. “They won’t be penalised if they flout the rule; it’s only a precaution for their safety,” he added.

Transport experts said the law was preposterous and the government should focus on providing facilities such as level footpaths and wheelchair ramps rather than requiring people to wear signs.
“It is strange when handicapped people are asked to carry extra burdens and obligations,” Institute of Transportation Studies chairman Darmaningtyas said.

Association of the Parents of Disabled Children chief Hendratmoko said: “This is a mistake. Why should our children put signs on their bodies?

“I don’t understand what’s motivated the lawmakers. They should give protection by providing facilities for the disabled. There are hardly any facilities even in a big city like Jakarta.”
Critics have complained that the amended law gives priority to car drivers over pedestrians and those using public transport, and runs counter to efforts to encourage people to take buses to alleviate pollution and traffic jams.

The Indonesian capital, a city of some 12 million people, is choked daily by traffic gridlock but there are almost no facilities for pedestrians – able-bodied or otherwise – except footbridges.
The Institute for Transportation and Development Policy has predicted that by as soon as 2014 Jakarta could experience total gridlock, where all road space is filled with barely moving vehicles.

I know that as a parent of an autistic child, I want to see much more research on what enhances the lives of autistic individuals, not research that seeks to annihilate autism. I want research that shows how autistic people learn and what they have already contributed to the world in order that an autistic way of doing and thinking is more valued in this society.

I believe with all my heart that there is a place for Adam —  many places among us all where he will contribute greatly. I believe it so much,  I joined the Critical Disability Studies Department at York University; to help make the dialogue as prominent, if not more so, than the research funded for cures. 

I am at a university which not only has such a department that questions all status quo notions about disability, but also talks fundamentally about social justice. It is so ironic because nearby work the to “fight this terrible disease,” and across the way, a behavioural department seeking to modify undesirable autistic behaviour. It’s an interesting mix, this microcosm of the world the UNIVERSE-CITY. (University was never as subdivided as it is today. The focus used to be on studying everything so one had a universal knowledge — sort of like a renaissance-man sort of body of knowledge where one area of study would inform the other. Scholars often note the dumbing-down of a university education with areas of specialty. This is what the Critical Disability Studies Department does not do. It culls from philosophy, history, sociology, law, culture, art and more to study disability).

If you are interested in this kind research (and there are more calls for social research out there everyday), you can start at the Interagency Committee on Disability Research to start. Check out the universities as well. The more we ask, the more we may receive:

The ICDR Seeks Your Recommendations on Emerging Disability Research Topics

Web site provides opportunity to vote and prioritize disability issues of greatest concern

This year for the first time, the federally mandated Interagency Committee on Disability Research (ICDR) is utilizing an innovative Web-based approach to collect online disability research comments to assist in developing a federal disability and rehabilitation 2010 research agenda. This technology-driven approach gives the public a three-week time frame from March 27th through April 17th to submit their recommendations.

Additionally, registered participants will be invited to review all comments submitted and vote on their top ten concerns in each topic area during the one-week period from April 22nd through April 29th. Public comments from stakeholders are the focal point of the disability research recommendations in the ICDR Annual Report to the President and Congress.

All disability-related research topics are welcomed, including discussion about concerns important to the veteran and military communities. The ICDR is seeking comments with special emphasis placed in the following areas:

• Collaboration and coordination among federal agencies;
• Health information technology and/or electronic health records;
• Health disparities;
• Health promotion in the workplace;
• Employment and health; and
• Other critical research issues.

Guidelines and Instructions:

• To submit your comments and vote via the Web site you must create an account.
• If you have problems submitting comments via the Web site please either:
  • e-mail your comments to ICDRevents@cessi.net,
  • fax them to 703-442-9015, or
  • mail them to: ICDR c/o CESSI, 6858 Old Dominion Drive, Suite 250, McLean, VA 22101.
• Written comments must be:
  • No longer than 250 words or 1,500 characters
  • Single-spaced using 12-point font in Times New Roman
  • Received or postmarked by April 17, 2009 (3:00 P.M. EDT)
• Online Public Voting: April 22–29, 2009 (11:59 P.M. EDT)

About the ICDR

The ICDR is authorized by the Rehabilitation Act of 1973 (as amended) to promote overarching coordination and cooperation among federal departments and agencies conducting rehabilitation research programs and activities. Major roles of the ICDR are to identify research duplication and gaps, secure public input and compile data to inform future research, promote communication and coordination, and facilitate interagency collaboration.

The ICDR brings together agency representatives, policy makers, advocates and people with disabilities through a Senior Oversight Committee (SOC) and subcommittees. The SOC is the ICDR administrative body that spearheads interagency collaboration and research coordination. The subcommittees represent specific areas of disability research including education, disability statistics, employment, medical rehabilitation, and technology. The ICDR facilitates the exchange of information on disability and rehabilitation research programs, activities and collaborative projects among ICDR member agencies and federal partners.

For more information about the ICDR, visit the Web site: www.icdr.us.

In the seventeenth century Spanish and Dutch ships came ashore to the new land and killed natives because they were perceived as “pests.” In 1828, The British Captain Robert Fitzroy arrived on a survey mission for the Royal Navy. Fitzroy took four natives as captive back to England to transform them into “civilized” people. “After nine months of religious schooling, [the natives] were summoned to appear at the court of King William IV and Queen Adelaide, where Fuegia Basket [a name ascribed to one of the native girls in England] was presented with a lace bonnet, a ring and a small dowry. To fulfill his goal of bringing Christianity to Tierra del Fuego, Fitzroy set sail on December 27th, 1831 on the 240-ton bark HMS Beagle with seventy-four crew members, and Anglican catechist who would establish a mission with his three converts, and a recent graduate of Cambridge, the young naturalist Charles Darwin.” (p. 90 Blessed Unrest).

As Paul Hawken writes, Darwin had only seen natives clad in “civilized” clothing up until the time he reached the New World. He did not expect to see, I imagine, Fuegians clad in seal blubber. He could barely accept that the Fuegians were members of the human race. He said, “I could not believe how wide was the difference between a savage and a civilized man: it is greater than between a domesticated and wild animal, in as much as in man there is a greater power of improvement.” (Charles Darwin, The Voyage of the Beagle: Journal of Researches into the Natural History and Geology of the Countries Visited During the Voyage of H.M.S. Beagle Round the World, New York: Modern Library, 2001. p.122).

Like most of us, Darwin’s powers of observation failed him. Darwin was, Hawken notes, surprised by the Fuegian’s ability to mimic — they could do so with language, right down to entire sentences, coughs, facial expressions. Yet, “because he could not easily distinguish words in their own native language, [Darwin] concluded that they were merely repeating a few simple phrases and thus had a very small vocabulary.” (p.91). Darwin said, “Their language does not deserve to be called articulate: Capt Cook says it is like a man clearing his throat; to which may be added another very hoarse man trying to shout & a third encouraging a horse with that peculiar noise which is made in one side of the mouth…I believe if the world was searched, no lower grade of man could be found.”

Because Darwin didn’t understand the Fuegian language, because they were not like him, he deemed them barbaric. Little did he know that Fuegian culture was ripe with “animated and nuanced conversation.” Thomas Bridges, an orphan adopted by a missionary family, “spent twenty-one years compiling a dictionary of 32,430 words and inflections [of the Fuegians], a number that was comparable to Japanese vocabulary, before accounting for Chinese and English influences. Because Bridges died in 1898, before the dictionary was completed, we are left to imagine the sum of the Yamana vocabulary. [Yamana is the Fuegian language].

“As you turn the pages of this remarkable document, you realize that there seems to be a precise word to describe every moment in their life. To appreciate the intelligence required to understand and use 32,430 words, consider that Samuel Johnson’s Dictionary of the English Language, published in 1755, contained 42,773 words. Shakespeare is credited with having used 29,066 different text words in his complete works, but in terms of truly distinct words, and disregarding overlapping usages, there are fewer than 20,000 words but will use no more than 1,500 to 2,000 over the course of the week. Half of the conversational vocabulary of an American teenager consists of fewer than forty words.” (Hawken, p.92)

Hawken’s book Blessed Unrest is about the loss of indigenous cultures, abuse of the environment, free-market fundamentalism and social justice. He notes that with the loss of a language comes the extermination of a culture.

Autistic people and the disabled community call themselves a culture, to which there has been vitriolic response from non disabled communities, namely parents and caregivers. I have to question, then, what constitutes a culture and why the self-appropriation of “autistic culture” by autistic self-advocates has become so offensive to some care-giving groups. One automatically assumes that anger is generated by a fear of loss — services, empathy, pity, perhaps. This has been the assumption by disability rights activists, after all. Yet why the contest? I personally see no reason why thousands of people who come together and self-appropriate “culture” is not just as valid for autistic people as it is with Native people, Black people, Asian people, Jewish people and so forth.

I am herein beginning to make a case for autistic culture. I am pointing out that our autistic children, privy to the same, potentially harmful assumptions that they are of lower value because they are not understood by society-at-large, are not Darwin’s children, yet, they are treated no differently in most cases than Darwin treated and referred to the Fuegians.

This will not be my complete essay on the topic. I am only suggesting that a culture, by virtue of the following definitions we’ve used to ascribe a people as a culture are:

” – a particular society at a particular time and place; ‘early Mayan civilization’
– the tastes in art and manners that are favored by a social group
– acculturation: all the knowledge and values shared by a society
– (biology) the growing of microorganisms in a nutrient medium (such as gelatin or agar); ‘the culture of cells in a Petri dish’
- the attitudes and behavior that are characteristic of a particular social group or organization; ‘the developing drug culture; “the reason that the agency is doomed to inaction has something to do with the FBI culture’
– grow in a special preparation; ‘the biologist grows microorganisms’
– the raising of plants or animals; ‘the culture of oysters’ “(Source: Wordnet)

It seems to me that autistic people, or people within the autistic culture, share these attributes. The most highly disrespected aspect to autistic culture, and perhaps the least investigated from a point of validity, is autistic language — an “agent” of autistic culture. That is, as long as we view autistic behaviour and actions as irrelevant and deviant, much like Darwin did to the Feugians, we are potentially missing a rich dynamic system and people. In a world where English is used everywhere and we are homogenizing world-wide mostly in the name of business, we will kill off indigenous cultures by the thousands. Hawken’s writes “A language dies when it is not spoken to a new generation of children. At the rate of decline we are now experiencing, half of our living cultural heritage will disappear in a single generation.” Language, many linguists state, is a distinct way of experiencing and sharing dreams, ideals, visions of life itself.

“A Western bias about belonging to a superior culture is valid only if we use selective yardsticks,” writes Hawken. “Rather than assuming people want to surrender to Western values we would be wiser to consider the loss of language as yet another indicator of worldwide collapse of ecosystems…” (Hawken, p.95).

Can we define, narrow down, or record a distinctive autistic “language?” Is autistic language and modes of expression systematized? It seems to me we have absolutely recorded many of the nuances of autistic language and behaviour — the latter which of course is a form of language. Just look at the DSM (Diagnostic Statistical Manual). Like Darwin who put on a set of glasses with a view to calling native culture “inferior,” the DSM uses similar terms of inferiority to define what autistic people and their language are not, rather than what they are. If we can observe and categorize a group of people as “deficient,” then the opposite can be true. Autistic people, like other indigenous peoples, are in and of themselves distinct — a group with their own language, behaviours, modes of expression, art and for the most part, values.

Adam’s language contains thousands of nuances, combinations and permutations — gesture, noises, words, typing, singing, and more, which I have come to understand quite well. I have not yet sat down to describe every single utterance, but as you note on this blog, I sometimes do try to record things for the sake of suggesting that his language is just as valid as mine.

I would strongly encourage everyone to consider that autistic culture is something we should cherish, not perish. Darwin’s view was that there were “higher” and “lower” kinds of people, something that autistic people can attest still exists when others define them. We don’t have to put on rose-coloured glasses to see autistic culture, we just have to consider changing the lens.