Elizabeth Gilbert’s, Committed: A Skeptic Makes Peace With Marriage

Filed Under (Book Reviews, To Get To The Other Side) by Estee on 31-01-2010

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 41waKzNI4wL._SL500_AA240_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!

He must go out into the world….

Filed Under (Adam, Autism and Learning, Communication, To Get To The Other Side) by Estee on 28-01-2010

Adam is almost eight years old. I can hardly believe how the time keeps marching by; how the year of separation from Adam’s father has also gone by. Soon, Adam and I will be living in our new house and rebuilding our lives.

Adam is changing and I reminisce from the early days — when he was diagnosed at 19 months of age, how I started this blog back in 2005. He is becoming more curious, more adept, stronger. He is always learning. He gets frustrated. He still cannot communicate with words very well. He must use a device. He does not understand, I believe, inherent dangers as he explores his new exciting world. Laundry chutes, small dark corners are inviting spaces for all little children. I teach as best I can with a firm “no,” a new rule that he can easily comprehend, and a stop sign posted to various areas of the house. It may not be “designer” but style makes no sense where safety is concerned.

Adam is also heading out into the world. Yes, he has his aides. But as a newly separated person who now must share time with Adam’s father with regards to Adam, I find myself during lonely nights thinking about how life is always about letting go: of fear, of things, of little children growing into bigger independent children (or quasi independent in our case). As Adam grows, I must learn to let him out into the world with others so he can learn more. It is a great challenge for any parent, and perhaps even more punctuated when one is a single parent. And as all things with our children as we watch them grow, it’s (delightfully) bittersweet. Adam would grow up resenting me if I held him back and did not let him explore. I have to let him do it in safe ways, in stages. When he grabs that sharp knife to cut a piece of fruit, I have to teach him with a dull knife (and with supervision of course). I have to let him explore dark spaces by creating safer dark spaces. I have to let him jump around the house, not on furniture where he may hurt his head, but on equipment set up for the task of jumping. In the case of Adam and his neurological needs, I also have to LET him be who he is and get the feedback he needs.

He needs to run, he needs to jump, explore, and yes, eat lemons. I would never be able to hold him back to change these activities because they don’t look like typical play. I need to provide him safe avenues to explore these things. Instead of viewing these things as “overwhelming” because they are not what all typical children necessarily do, I must learn new ways of helping him explore. While there are not as many programs and “how-to” books out there, common sense, time, and a deep breath help me figure it out.

It’s the same at school and we are lucky right now to have a school that allows Adam to explore safely, that allows aides, that allows us to bring in adaptive technologies and programs that help Adam learn in the way he can. But when people first meet him, I am starkly aware of how they will measure him — what “competency tests” to assess what he does and does not know that are delivered in a way that we take for granted, and perhaps that Adam would not be able to respond to. Far less effort (and money) is paid to adapting those tests so that he could respond — like visual options for answers, multiple choice. Adam is extremely visual and “performs” well when given this option. And I write this because I saw the movie NELL last night with Jodie Foster. I have been calling Adam — among many nicknames like boo boo bear, moo moo, Adiboo, Adamame… and Chickabee — the nickname Nell uses in the film. I must have picked it up a few years ago when I first saw it. I love the movie Nell because it reminds us that humans can create languages that perhaps not everyone understand easily and in the way we are used to, but how we create meaning.

And Adam communicates, indeed. He has a language that I’ve learned to, believe it or not, take for granted! But as he goes out into the world not everyone will know his language. He would be given those “competency tests,” and maybe even fail because they don’t measure in a way that addresses how he can express what he knows. So yes, my Adam now goes out further into the world. And yes, we have to teach him to communicate within it and learn the more common way of communicating. But I still believe he will and should always keep his mother tongue.

TAAProject in Oprah Magazine This Month

Filed Under (Activism) by Estee on 24-01-2010

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The Autism Acceptance Project made the grade in this month’s issue of Oprah magazine. In “100 Things That Are Getting Better,” TAAProject made it for autism acceptance (number 69 to be exact).

We (of The Autism Acceptance Project) are humbled and proud of this and it comes at a time when we are rethinking the website and the content and conjuring new projects. Thank you, Oprah, for acknowledging autism acceptance.

Also, as I go to other autism programs these days, I feel a movement towards change, even though we have farther to go. There are more programs that do not treat my child as a burden or abnormal, but more (but still not enough) that honour his way of learning and who he is as an autistic person. I thank also all those people (there are so many more) who also who work towards ensuring that autistic people be treated as equal and valuable human beings.

Ever Tried, Ever Failed: No Matter, Try Again

Filed Under (Art, To Get To The Other Side) by Estee on 21-01-2010

I’m excited about this:

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This is a painting made for me by Carla Lipkin (click on her website for more information about her artwork). I believe if you click on the image, you will see it more clearly. Carla has worked on it for about six months in preparation for my move next month. It now sits proudly in my dining room. It is a compilation — about thirty layers — of quotes and words I have sent her that have significant meaning for me as I “get to the other side” of my life after divorce. Over the past year, I have been reading and writing and meditating rather than putting myself out there too soon. I believed that mourning a relationship that was the most significant of my lifetime (so far) warranted no less of a process.

I decided, with Carla, to make something beautiful out of this period, and I am excited that it manifested in this result. I want to thank Carla and Hilary (her mom and my dear friend) for supporting me and for making an exceptional commissioned work that will remind me that there are no failures in life — only experiences. That said, thanks also to Adam’s dad not only for thirteen years and for Adam, but also with whom I hope to share a future of positive co-parenting of our wonderful boy.

My Kind of Welcome Mat

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

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

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

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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.

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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.

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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.

Thank you, 2009

Filed Under (To Get To The Other Side) by Estee on 12-01-2010

My little ditty (video) came out very little. I wrote a post with this but it also deletes the video (I know, it was me) and I am letting go of struggling to make it bigger. So grab a magnifying glass… the beginning is a white owl flying in the daylight. They are mainly photos I took in 2009. There are pictures of friends and family, a couple of old highschool photos sent by old friends, and the places I visited this year… Beethoven’s front door…skulls on an alter from the Napoleonic era.

I’ll write the post again this week. In the meantime, I need to thank everything that happened in 2009. They say that we should not discount that in times of struggle or crisis, we just might be having the time of our lives. Click on “Thankyou” below to view:

Thank you

Restraint as behavioural tactic on CBC tonight

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

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

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

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

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

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

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

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

Travel and The Autistic Child

Filed Under (Single Parenthood, To Get To The Other Side, Travel) by Estee on 06-01-2010

Curiousity is a wonderful human trait. Adam is autistic and while he needs some regularity and structure and familiar environments, he also needs to explore new ones. He is curious. He likes to explore — in his own time — new foods, new things, new places. I pride myself on having traveled with Adam even when it wasn’t easy to travel with him. I do it with him as a single parent now, and his dad and I did it together when we were married. While I was tentative in Adam’s early years of flying him as far as Africa, I do not rule it out as he grows older. Just because Adam is autistic does not mean that he should not see the world. It’s how we orchestrate the process and itinerary that’s important. As a parent, I know I also have to be prepared for anything. Too many expectations can foil the best of plans.

We’ve had great flights and not-so-great-flights. I can never predict or prepare enough. I have learned from Adam to give ourselves plenty of time, to pack his bag with his favorite toys, foods, and DVD’s. I generally know that early morning flights seem to be easier than mid-to-late afternoon flights, although like everything, there are exceptions to that rule. Adam can be happy and calm as I “work” the flight with him. As a parent of an autistic child, I have learned to stay on top of Adam’s needs before any anxiety is triggered, for once triggered, it can be difficult to calm down. So as a parent, I don’t get to read the paper or a good book when I’m on a flight with Adam, but I still believe the effort is worth it. Travel, like autism and life, is a journey we cannot perfect. We cannot always predict how bumpy the flight may be. We can’t predict delays that are a normal part of travel. We can’t predict the mood our child might be in as much as we cannot predict our own. We can, however, try to prepare ourselves and do our best to keep calm in challenging circumstances.

I’m talking about travel because not only do I thrive on it myself, but as a single mom I look forward to exploring the world with my autistic son. We’ve been to Alaska, we’ve been to the U.S. and the Caribbean. I am looking forward to taking Adam to Italy where I have a feeling he will love it for the sights, the gentle sounds of a murmuring town square, the Gelato, tomatoes and salami — not to to mention the flocks of pigeons he can chase and the magnificent art. It’s my dream to take Adam abroad. But it’s not my dream to endure a difficult flight. It’s my problem, I know. I don’t like to see Adam suffer. I think I have to just get things organized (like rent one place and make it our “home base” for several weeks). I am admittedly tentative about the overnight flight to Europe. Everyone tells me that this should be the easiest because children “can sleep on an overnight flight.” They don’t know my Adam. I remember that twelve-hour day from Alaska back to Toronto where Adam was beside himself. We learned that Gravol didn’t put him to sleep as it sometimes does for other children. I’ve learned that Chlorohydrate doesn’t settle Adam before an EEG. I’ve learned that Melatonin won’t relax him on a flight, either. Adam, my Adam, is my prize-fighter. If Adam is anxious and does not want to sleep, giving him sedatives may have the opposite effect. He may metabolize medication differently. Or, he just too anxious, period.

I will eventually book that trip to Italy at some point, deal with my fears and see what happens. I think I’m a well-prepared mom and it’s the times when I’m most prepared that I find easiest for both Adam and I. I’ve found some good suggestions on traveling with the autistic child (see below) that others may find useful and I’ve employed about all of these strategies. But I’ve not yet traveled afar with the little one and I notice that no one else has written a thing on the Transatlantic flight and the autistic child. I assume (hope, really) that some autistic adults may have some suggestions on helping a prize sleep-fighter enjoy his mid-air travels. Like so much information we seek as parents of autistic children, there simply isn’t enough to support us on our travels in life and abroad.

Travel Tip Sites:
Autism Family Travel
Coping With Autism (on Vacation)
How To Prepare For Traveling With A Child With Autism
Caring for Kids — Air Travel

Somewhere in between: the truth and fiction behind autism and divorce rates

Filed Under (Acceptance, Celebrity Advocacy, Family, Single Parenthood) by Estee on 04-01-2010

I feel manipulated. Not by a person, but by the many messages I am getting about autism and high divorce rates. Imagine me now looking through new eyes. Adam’s dad and I have been separated for little over a year now. Last night on TVO aired Autism The Musical and the BBC production of The Autism Puzzle (the latter which I found to be a good documentary…it is the second time I’ve watched it) and today on CNN (again) I am confronted with a deluge of autism media and I am sitting in my bed, alone, weeping, laughing at myself — weeping again. I might look to an outsider like Meg Ryan in some Hollywood romantic comedy. It’s not that I didn’t appreciate Autism The Musical. It’s just that I have to think critically of how a general public might view some of the very real comments — so real they made me weep. Take a look at this story before continuing to read:

Lisa Jo Rudy of About.com on all things autism (an autism mom herself) also recollects about Adam’s dad (from the movie — not my Adam):“Adam’s dad, now estranged from his mom, is bitter because of his wife’s obsession with Adam’s autism. Mom, meanwhile, spins out of control when she thinks her son’s cello solo will be cut from the final musical production.”Adam’s dad (in the film) suggests that he believes all autism moms suffer divorce because they are scrounging every ounce of information for the benefit of the child. Adam’s mom and dad are still together during the filming and the mom discusses how dad has had a long-standing affair, and she is clearly overstressed and bitter and I understand all of that.

As I’ve said, I’m looking through different eyes now. Yes, Adam didn’t sleep and I was so grossly sleep deprived. Yes, I was obsessed with finding out every ounce of information in a world that doesn’t accept autism. As a mother who loves their child (or a father — think Robert Hughes, Ralph Savarese among hundreds of other incredibly dedicated dads), this was the obvious choice. As an educated person, I read and study…and go back to university to get a degree in Critical Disability Studies. It is my way of dealing with things. I have a need to help Adam in this world that still does not offer enough programs, services, care, respect and inclusion. And I’m choosing to accept the choice with open arms. I’m choosing to move forward and continue learning from all the lessons on this autism journey.

Truth about divorce lies somewhere between anecdote and statistics. While I have compassion and I feel that this is so real for so many families, I have to question if we are all being manipulated. I am thinking of Jenny McCarthy and her story of feeling alone in her marriage with her autistic child. I think many parents feel alone when they are researching and searching for scarce programs — indeed there is a feeling of isolation that sometimes even extended family members will never understand. I remember the Autism Everyday Video and how the number “eighty percent of all autism marriages end in divorce” was thrown out as a matter of fact, rather than what it is — speculation. I spoke out about the “wanting to drive off the George Washington bridge” with the autistic child comment because it was used in a campaign to raise money for autism by making autism look terrible, not because I don’t believe or do not have compassion for the moments when some parent may be in a moment of despair. It’s all real, you see. The divorce is real too. Some partners do not want to deal with the responsibilities of raising children — particularly disabled children. Some partners do not leave just because of autism. The problem with using these stories in autism promotion videos is that it is used to sway our feelings about autistic people in particular. It uses autistic people as a crutch for the gamut of natural human emotion. People with non-disabled children also get divorced. People with non-disabled children also do unspeakable acts to their children. It is simply not fair to blame autism or disability as the cause for despair and divorce.

There may be some truth to divorce and disability, but statistics don’t necessarily agree. Apparently divorce rates, according to Kristina Chew’s article, are down and I’m particularly concerned when disability is used as the sole reason for a divorce. Kristina also writes: “Citing autism as the reason for a marriage failing can be seen as yet another reason for saying why autism is so awful. Taking care of Charlie is a privilege but it is not always easy. Childcare arrangements are a constant juggling act for Jim and me and we tend always to think of Charlie’s needs first, and of each other’s after that. We both agree that it should be this way. Jim and I would much prefer living closer to New York City due to our jobs but Charlie’s education comes first. We left the house that we planned to live in for 30 years in order that Charlie could have the right school placement. (And until this September we were living with my in-laws, which was very, if not too, interesting at times.) Jim and I have made many of our choices based on ‘what Charlie needs’ rather than on what would be best for the two of us and I do hope that, ultimately this will be best for the three of us.”

It doesn’t matter what stressors are involved in marriage — the more there are, the more vulnerable a marriage becomes. Some couples manage to work together, some do not. Sometimes, when the marriage is done and some of the stressors are gone, parents become better at working together. Sometimes challenges bring couples closer together. There is no magic formula and there are no right or wrong answers. Is raising a child with a disability more challenging? Absolutely. Should it be blamed for divorce? No.

What we need along with the compassion is to look at our sorry weeping selves in the mirror to ask analytical questions. Who is producing the video? Is it a real story or is a fundraising video? What is it asking us to believe? Does it pull on our heart-strings to sell copies? Telling truth means that the conclusions are not necessarily clear — at least not for public consumption. I for one, will not blame autism or Adam for my marital situation, even when day-to-day life is not always easy. In her article Genie In A Bottle, Shelley Hendrix in HuffPo discusses divorce, emotion and her autistic son: “For a very simple reason over the last six years, I have clung to the hope that my son Liam was insulated from the emotional distress that can envelope a child when their parents divorce. He has autism.

For once, I had hoped that his exceptionality was a perk, protecting his innocence and preserving his heart. I was wrong. Very, very wrong. With his nonverbal days behind him and his growing conversational skills he can express himself, just like any other child that experiences divorce.

His message this summer? He desperately misses the unified family that he once had. His questions and comments mirror the conversations I have had with his younger sister throughout the years. Is it his fault? Why can’t we get back together? Why did you get a divorce? Did you love daddy? Did he love you?.”

I worry like any other parent during a time of divorce. I too want to protect Adam, as all children of divorce seem to do, from blaming himself. I am particularly aware of how he manifests anxiety and worry that it’s because of divorce — and as autistic children are not unaffected, I must assume that there are days when his head wonders what the heck has happened. One day, like Liam, he may be able to tell me so, and I don’t think anyone should underestimate the effects of divorce on the autistic child just because that child seems happy all the time, or cannot talk, or does not appear to be aware of what’s going on.

Two adults are responsible for making it (or not) and society is also responsible for supporting marriage and families — particularly families who have more on their plates because of the lack of community supports. (And uh hum — who is going to want to provide supports when people — as the woman interviewed – discuss autism as worse than getting a root canal?!) Two divorced adults are also responsible for making transitions in life for the autistic child as smooth as possible, while respecting the child’s need to express their concerns which are manifested by anxiety (and we know as autism parents that anxiety doesn’t always look anxious, but also hyper). Adults are responsible for taking the responsibility. There is no easy answer for our lives in marriage or divorce; no predictions.

The work I must do for Adam still sits in front of me. The assistance he may require in his adult years is likely. I look at it this way: when a marriage ends there are new opportunities — to build strength and hopefully cooperation. Right now, as I myself am going through this new transition I have yet another opportunity to look at pity in the eye and step forward proudly with my autistic child.

Of course I would not be human if I did not wonder if more support, programs and information would have lessened the time I spent assisting Adam, coordinating his teams, his school requirements, his IEP, his communication devices and needs, playgroups… Would I have done things differently if there was more support out there? If I had had more sleep? This is a question I cannot yet answer. All I can say for now is that it was a choice grown from love and devotion. Choices have consequences and rewards. I don’t blame autism. I don’t blame a person. It’s what was meant to happen. The work we do today, I believe, may help others tomorrow. Adam, for one, will know that he is valued and that I valued the time I was married to his father. I value the lessons we continue to learn and the many joys and struggles on our journey.

I started the Joy of Autism blog in 2005 with the support of my then-husband who told me to “start a blog” not unlike Julia’s husband in Julia and Julia. He apparently believed that, like Julia, I “have thoughts.” :) He supported the work I did for The Autism Acceptance Project. But life, as they say, is “complicated.” Here we are. Who would believe that I think that even all of this is a gift?

I do. Now, on with the future.

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.