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	<title>Estée Klar &#187; Book Reviews</title>
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	<description>The Joy of Autism is about our journey with autism and our opinions about how society views it.</description>
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		<title>Is Having A Disorder The New Normal?</title>
		<link>http://www.esteeklar.com/2010/07/28/is-having-a-disorder-the-new-normal/</link>
		<comments>http://www.esteeklar.com/2010/07/28/is-having-a-disorder-the-new-normal/#comments</comments>
		<pubDate>Thu, 29 Jul 2010 03:05:45 +0000</pubDate>
		<dc:creator>Estee</dc:creator>
				<category><![CDATA[Acceptance]]></category>
		<category><![CDATA[Activism]]></category>
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		<category><![CDATA[Autism Spectrum and Diagnosis]]></category>
		<category><![CDATA[Book Reviews]]></category>
		<category><![CDATA[Critical Disability Studies]]></category>
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		<description><![CDATA[Using the title from Kat Kelland&#8217;s article in today&#8217;s Globe and Mail, she suggests that experts are worried that, with the extended array of defined disorders in the soon-to-be-released DSM V (Diagnostic and Statistical Manual), no normal person will continue to exist.
&#8220;Citing examples of new additions like &#8216;mild anxiety depression, &#8216;psychosis risk syndrome,&#8217; and &#8216;temper [...]]]></description>
			<content:encoded><![CDATA[<p><a href="http://www.theglobeandmail.com/life/health/mental-health-experts-ask-will-anyone-be-normal/article1653548/">Using the title from Kat Kelland&#8217;s article in today&#8217;s Globe and Mail, she suggests that experts are worried that, with the extended array of defined disorders in the soon-to-be-released DSM V (Diagnostic and Statistical Manual), no normal person will continue to exist.</a>
<p style="text-align: justify;"><span style="color: #ff0000;">&#8220;Citing examples of new additions like &#8216;mild anxiety depression, &#8216;psychosis risk syndrome,&#8217; and &#8216;temper dysregulation disorder&#8217;&#8230;many people previously seen as perfectly healthy could in future be told they are ill&#8230;.&#8217;It&#8217;s leaking into normality. It is shrinking the pool of what is normal to a puddle&#8230;</span></p>
<p style="text-align: justify;"><span style="color: #ff0000;">Dr. Wykes and colleagues, Felicity Callard, also of Kings Institute of Psychiatry, and Nick Craddock of Cardiff University&#8217;s department of psychological medicine and neurology said many in the psychiatric community are worried that the further guidelines are expanded, the more likely it will become that nobody be classed as normal anymore.&#8221; </span></p>
<p>Well, it&#8217;s about time. Perhaps ironically, I&#8217;m not one for self-help aisles and a belief that we all suffer from some made-up ailment that can be remedied with expensive quackery. At the same time, I also understand that there is a widespread concern that if we simply dilute human differences and challenges we do not address serious  medical and practical needs. In other words, some people fear that a complete distillation of humankind will take away much needed work towards attaining the services, medical attention, and accommodations that we continue to need in order to replace the treacherous world of asylums. <a href="http://http://www.nytimes.com/2009/11/03/health/03asperger.html">This article in The New York Times, cites some of the other concerns specific to the autism diagnostics proposed for the new manual.</a></p>
<p>What the <strong>Globe and Mail </strong>article assumes quite simply, however, is that there are only two kinds of people: normal and abnormal. We know that in history that it is <em>this</em> whitewash, this binary, that is the most dangerous because it has  subjugated individuals with differing needs, thinking ability and functioning levels to not only the margins of society, but to maltreatment and exclusion of all kinds.</p>
<p>Until  recently, disabled people have had no rights. Still today, seen as non-persons despite <a href="http://www.ada.gov/">legislation and the ADA</a>, disabled and autistic individuals continue to struggle for their right to have a voice at policy-making tables, and to be accepted and accommodated for their needs while contributing as autistic and disabled people. Not a day goes by that the notion of cures and getting &#8220;better&#8221; (that is &#8220;more normal&#8221;), underlies the purpose of teaching autistic people at all, as opposed to teaching them to their strengths and abilities as well as with a regard to the value of autistic contribution.</p>
<p><a href="http://www.dsm5.org/research/pages/autismandotherpervasivedevelopmentaldisordersconference(february3-5,2008).aspx">As a committe works to redefine the characteristics of autism, the questions that the committee ask in the panels are well worth reading.</a>  I cannot help but wonder how getting an autism diagnosis may change for parents and autistic people, and consider that the future could be brighter. In my view, we seem to be asking some of the right questions with regard to the spectrum of autism and the fallacy of the association between intelligence and functioning levels. So I guess I&#8217;m saying that as I read the <strong>Globe</strong> article this morning, I was sort of nodding my head. Yes, there is no normal&#8230;.that&#8217;s right. Why fear that? What is it that we must do and how must we think differently in order to finally obliterate that binary?</p>
<p>It is here that  I have to refer to <a href="http://http://www.jkp.com/catalogue/book/9781843106043">Wendy Lawson&#8217;s book <span style="text-decoration: underline;"><strong>Concepts of Normality: The Autistic And Typical Spectrum </strong></span>(Jessica Kingsley Publishers, 2008). </a>In it she states,</p>
<p><span style="color: #ff0000;">&#8220;Currently the debate about &#8216;what is normal&#8217; is causing some heated exchange; this is not new. In particular the debate concerning autism, disability, neuro-diversity and typicality poses some ongoing challenges. Disability presents itself in a variety of ways, and for most of us living with disability, who we are is normal for us. For many people on the autism spectrum, which is certainly very disability in a world that does not accept, value or accomodate &#8216;difference,&#8217; being handicapped is an everyday reality&#8230;Having a respectful understanding of one another should include accessibility to appropriate resources, support, safe places and sincere appreciation of difference. Anything less is not acceptable.&#8221;</span> (Introduction)</p>
<p>Recently, <a href="http://http://www.thomasarmstrong.com/neurodiversity.php">Thomas Armstrong released his book, <span style="text-decoration: underline;"><strong>Neurodiversity: Discovering the Extraordinary Gifts of Autism, ADHD, Dyslexia and Other Brain Differences</strong></span>, (De Capo Press, Cambridge, 2010).</a> In his first chapter &#8220;Neurodiversity: A Concept Whose Time Has Come,&#8221; he has cleverly quoted Margaret Mead:</p>
<p><span style="color: #0000ff;">&#8220;If we are to achieve a richer culture, rich in contrasting values, we must recognize the whole gamut of human potentialities, and so eave a less arbitrary social fabric, one in which each human gift will fall into place.&#8221; </span>(from<span style="text-decoration: underline;"> Sex and Temperment in Three Primitive Societies</span>).</p>
<p>Thomas goes on:<span style="color: #ff0000;"> &#8220;In 1952 the first edition of the Diagnostic and Statistical Manual (DSM) of the American Psychiatric Association listed one hundred categories of psychiatric illness. By 2000 this number has tripled. We&#8217;ve become accustomed as a culture to the idea that significant segments of the population are afflicted with neurologically based disorders such as &#8216;learning disabilities,&#8217; &#8216;attention deficit hyperactivity disorder,&#8217; and &#8216;Aspergers syndrome,&#8217; conditions that were unheard of sixty years ago. Now, even newer disabilities are being considered for the next DSM in 2010, including relational disorder, sexual behaviour disorders, and video game addiction.&#8221;</span></p>
<p>&#8220;How did we get here?&#8221; Thomas asks. He cites things like a greater knowledge of the human brain and research into the area, a growth of advocacy movements that push for &#8220;awareness,&#8221; (alas, is it no wonder why most of us shudder at &#8220;Autism Awareness Month?). Mostly, the need for the advocacy marketing plan is the way to raise money for things like remedies and therapies. No family wishes to envision their children in asylums and mental hospitals (another topic because they were set up with all of the good intentions we have today for many of our &#8220;centres,&#8221; but ended up so overpopulated that the patients within them were neglected and abused). While there has been a valid reason for advocacy movements, perhaps an acknowledgement that all humans are interdependent and need different supports (no matter the severity of their handicaps), may be a very welcome change.</p>
<p>While we keep tripping over the question of what is normal, I wonder if we need a supplementary manual that cites abilities, suggestions for inclusion, education, and the like.  Perhpas we need not define handicaps as disorders, but very real challenges and acknowledge them against the social stigma of having any kind of disability. I have to question that if the stigma didn&#8217;t exist, would we also be a society that tends towards over-medicalization? For I do acknowledge that heading into a doctor&#8217;s office these days one wonders why so many meds are offered so readily for what I feel to be the way in which we respond to life &#8212; anti-depressants and meds like Ritalin come to mind.</p>
<p>To me, this need not be a question of what is the right or the wrong way to be human, but how to support <em>all ways in which to be</em> human. A DSM can only do so much. It is up to us to ensure that we cultivate the society that treats and regards each person individually, for although we are united in our lack of normality, we are also unique.  It&#8217;s a complicated matter indeed, but in the end, all we wish is to be seen and loved&#8230;blemishes and all. </p>
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		<title>Elizabeth Gilbert&#8217;s, Committed: A Skeptic Makes Peace With Marriage</title>
		<link>http://www.esteeklar.com/2010/01/31/elizabeth-gilberts-committed-a-skeptic-makes-peace-with-marriage/</link>
		<comments>http://www.esteeklar.com/2010/01/31/elizabeth-gilberts-committed-a-skeptic-makes-peace-with-marriage/#comments</comments>
		<pubDate>Sun, 31 Jan 2010 19:32:49 +0000</pubDate>
		<dc:creator>Estee</dc:creator>
				<category><![CDATA[Book Reviews]]></category>
		<category><![CDATA[To Get To The Other Side]]></category>

		<guid isPermaLink="false">http://www.esteeklar.com/?p=2778</guid>
		<description><![CDATA[Review of Committed: A Skeptic Makes Peace with Marriage, Elizabeth Gilbert
Reviewed by: Estée Klar
I&#8217;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 [...]]]></description>
			<content:encoded><![CDATA[<p><strong>Review of <span style="text-decoration: underline;">Committed: A Skeptic Makes Peace with Marriage</span></strong>, Elizabeth Gilbert<br />
Reviewed by: Estée Klar</p>
<p>I&#8217;m a separated single mother. Last night, having dinner <em>à la</em> <strong>Sex in the City </strong>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 &#8212; they <strong><em>never, ever</em></strong> got married. They may be single, but they are all in long-term committed relationships.</p>
<p>This is not to say that I&#8217;m against marriage now just because I am separated, but since I feel I have not yet been successful, and in fact &#8212; let me borrow Gilbert&#8217;s own words &#8211;  &#8220;gutted&#8221; 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 &#8212; like <em>&#8220;All Kinds of Families&#8221;</em> upcoming on television with Rosie O&#8217;Donnell,and the hit HBO series, <strong>Big Love</strong>, and <strong><a href="http://www.esteeklar.com/wp-content/uploads/2010/01/41waKzNI4wL._SL500_AA240_.jpg"><img class="alignleft size-full wp-image-2793" title="41waKzNI4wL._SL500_AA240_" src="http://www.esteeklar.com/wp-content/uploads/2010/01/41waKzNI4wL._SL500_AA240_.jpg" alt="41waKzNI4wL._SL500_AA240_" width="240" height="240" /></a>Desperate </strong><strong>Housewives</strong>, well, Gilbert definitely knows what is on our minds. So long <em>Ozzie and Harriett, Little House on the Prairie </em>and <em>Leave it to Beaver</em>; these times&#8230;they <em>have</em> changed!</p>
<p>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 &#8212; falling in love with Felipe at the end of her <span style="text-decoration: underline;">Eat Pray Love </span>journey, living with him on his three-month visas into the U.S. and vowing never to marry each other &#8211;  we learn a little bit more about her and how and why we think such things about finding soul-mates and marriage partners. &#8220;Sentenced to marriage,&#8221; 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.</p>
<p>So she embarks on her next quest which manifests in this newly released book. Expecting the world from our partners to &#8220;make us eternally happy,&#8221; she cites an important, maybe crippling, contemporary theme &#8212; that the only quest worthy in life is to find happiness. &#8220;It&#8217;s the emblem of our times,&#8221; she says.<span style="color: #800080;"> &#8220;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&#8230;.We Americans often say that marriage is &#8216;hard work&#8230;&#8217; but how does marriage become hard work? Here&#8217;s how: Marriage becomes hard work once you have poured the entirety of your life&#8217;s expectations for happiness into the hands of one mere person. Keeping that going is hard work.&#8221; (p.48).<br />
</span></p>
<p>Of course, Gilbert can&#8217;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&#8217;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&#8217;s marriage than her mother: &#8220;&#8230;while it&#8217;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.&#8221; (p.197). So while Gilbert seems to identify in part the &#8220;shackles&#8221; that women find themselves in when they enter marriage, she also acknowledges that it can also be a repressive tool against men. &#8220;It&#8217;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.&#8221; (p.198.) She cites Robert Frost who says, &#8220;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.&#8221; (p. 198). But ask a thirty-something year-old single man, and I&#8217;m not so sure he would or wouldn&#8217;t agree. As woman have changed, I am hopeful that, since Robert Frost&#8217;s time at least, men have too.</p>
<p>Among the Hmong people she sets out to interview, where marriages are arranged, the women she attempts to probe about love don&#8217;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 &#8212; 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, <span style="color: #800080;">&#8220;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.&#8221; (p.35). </span>In Canada, where the person we link arms with is an important choice that reflects who we &#8220;are,&#8221; whether I like the idea or not, I would have to agree.</p>
<p>Gilbert&#8217;s chapters are separated to many aspects of marriage: <em>Marriage and Surprises; Marriage and Expectation; Marriage and History; Marriage and Infatuation; Marriage and Women; Marriage and Autonomy; Marriage and Subversion</em> and finally <em>Marriage and Ceremony</em> where she ultimately makes peace with her &#8220;life sentence;&#8221; albeit with a lot of soul searching and research! It seems to me that she finds her success in being &#8220;separate&#8221; 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 <em>Eat Pray Love</em> kind of year &#8212; 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 <em>at least</em> 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.</p>
<p>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 &#8212; looking for that lost half of ourselves. It&#8217;s not unfamiliar that concept &#8212; our &#8220;other half,&#8221; our &#8220;soul mate.&#8221; 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&#8217;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 &#8220;our choice-rich lives have the potential to breed their own brand of trouble.&#8221; (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 &#8220;kinds of families&#8221; 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.</p>
<p>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&#8217;ve hoped to illustrate via Gilbert&#8217;s book,  its own set of issues. Religion imposes a civil and &#8220;moral order&#8221; (religion assumes we are sheep that need guiding &#8212; another power schematic) &#8212; a role that today our lawyers deal with when we get divorced: how property and children are divided. After all, the State doesn&#8217;t care about our broken hearts. Gilbert discusses how women gave up everything to be in marriage in history &#8211; and let&#8217;s face it, to a large extent still do in modern times. In Europe&#8217;s history, cites Gilbert, <span style="color: #0000ff;">&#8220;the legal notion of <em>coverture</em> &#8212; that is, the belief that a woman&#8217;s individual civil existence is erased the moment she marries&#8230;a wife effectively becomes &#8216;covered&#8217; by her husband and no longer has any legal rights of her own, nor can she hold any personal property&#8230;<em>Coverture </em>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 <em>coverture </em>in his courtroom, insisting that married women did not really exist as a legal entity. &#8216;The very being of the woman,&#8217; he wrote, &#8216;is suspended during marriage.&#8217;&#8221;</span> (pp.65-66). Woman eradicated as humans?<em> This is not </em>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 &#8212; that our worth is hinged on marriage and men alone.</p>
<p>Just going out with many women, and seeing more middle aged women going out on the town with each other, I&#8217;m not altogether happy with what I see. Not only do women just want to go out &#8212; and now they can without the man which is of course, great and something we now take for granted &#8212; many of us womankind are still fiercely hunting. &#8220;MILFS,&#8221; (a sexist, unfortunate term meaning &#8220;Mothers I&#8217;d Like to _ _ _ _&#8221;) we in a certain age-group have now earned such derogatory terms &#8212; &#8220;Cougar&#8221; being another one of them.  You can see it in the eyes &#8212; checking out the men who walk into the room, trying to look coy with that red-coloured martini in their hands (<em>wait..I like red-coloured martinis</em>), 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&#8217;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?</p>
<p>Without the pressure of man-hunting, the best possible relationship and the ones I really value are those of my girlfriends &#8212; married, unmarried, gay, and yes, even yearning. None of us are alone with the very same questions Gilbert raises  &#8212; &#8220;sometimes life is too hard to be alone, and sometimes life is too good to be alone.&#8221; (p.81). Doesn&#8217;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 &#8212; as if I can party all night long. It&#8217;s all very ironic because <em>none </em>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&#8217;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&#8217;s as scary as hell. And <em>believe</em> me, it really <em>is</em> hard the first year of transition from married to single life! Don&#8217;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.</p>
<p>What I starkly realized whilst becoming single (it&#8217;s a process), is the stigma &#8212; that I am less <em>valuable</em> if I am not attached to a man (one of woman&#8217;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&#8217;s life without jumping into other people&#8217;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 &#8212; 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&#8230;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.</p>
<p>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 <em>Marriage and Infatuation</em>. “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&#8217;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 <em>was</em> 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&#8217;t know &#8212; they just stuck it out. Who knows what those factors were as they traversed life&#8217;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, &#8220;hard work.&#8221; Expectations or no expectations, it just can&#8217;t always be easy.</p>
<p>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 &#8220;house&#8221; with the strong foundation my parents built:</p>
<p><span style="color: #ff0000;">“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.</span></p>
<p><span style="color: #ff0000;">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.</span></p>
<p><span style="color: #ff0000;">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 <em>love</em> 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.</span></p>
<p><span style="color: #ff0000;">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…” </span>pp.109-110.</p>
<p>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&#8217;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 &#8220;love based unions make for fragile tethers&#8230;maybe divorce is the tax we collectively pay as a culture for daring to believe in love.&#8221; (p. 83). I have learned while we need to have choice and freedoms, with them come many responsibilities &#8212; 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. </p>
<p>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&#8217;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.</p>
<p>I do, I do, I DO!</p>
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		<title>Do You See?</title>
		<link>http://www.esteeklar.com/2009/12/29/do-you-see/</link>
		<comments>http://www.esteeklar.com/2009/12/29/do-you-see/#comments</comments>
		<pubDate>Tue, 29 Dec 2009 15:33:33 +0000</pubDate>
		<dc:creator>Estee</dc:creator>
				<category><![CDATA[Book Reviews]]></category>
		<category><![CDATA[Critical Disability Studies]]></category>
		<category><![CDATA[Writing]]></category>

		<guid isPermaLink="false">http://www.esteeklar.com/?p=2564</guid>
		<description><![CDATA[&#8220;You didn&#8217;t see me.&#8221; That must be the most popular line of relationship distress we&#8217;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 &#8212; all that vulnerable, squishy stuff inside of [...]]]></description>
			<content:encoded><![CDATA[<p>&#8220;You didn&#8217;t see me.&#8221; That must be the most popular line of relationship distress we&#8217;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 &#8212; all that vulnerable, squishy stuff inside of us that we want others to take in their arms and hold gently.</p>
<p>What does it mean to &#8220;be seen?&#8221; 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 &#8211;  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.</p>
<p><img src="http://www.esteeklar.com/wp-content/uploads/2009/12/51aLK0mgNqL._BO2204203200_PIsitb-sticker-arrow-clickTopRight35-76_AA240_SH20_OU01_.jpg" alt="51aLK0mgNqL._BO2,204,203,200_PIsitb-sticker-arrow-click,TopRight,35,-76_AA240_SH20_OU01_" title="51aLK0mgNqL._BO2,204,203,200_PIsitb-sticker-arrow-click,TopRight,35,-76_AA240_SH20_OU01_" width="240" height="240" class="alignleft size-full wp-image-2570" />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 <strong>Double Take: A Memoir</strong>, 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, &#8220;being seen&#8221; takes on a whole new meaning.</p>
<p>The photos in his book titled <strong>The Rolling Exhibition</strong> (named after his rolling around on a skateboard: &#8220;This Is A Legless Guy&#8217;s Skateboard. Please Please, Don&#8217;t Steal&#8221; 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&#8217;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?</p>
<p>(Interesting to go off on a tangent here to recognize that those fake boobies are in the same sense <strong>a prosthesis</strong> 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&#8217;t look quite real. So we stare to make up our minds, or stare because we are just so darn curious. <a href="http://www.ted.com/talks/aimee_mullins_prothestic_aesthetics.html">Aimiee Mullins</a>, 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).</p>
<p>Like the performance artist <a href="http://www.disstudies.org/about/board/bio/Petra_Kuppers">Petra Kuppers</a>, 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&#8217;s an unintended invitation, like being born into royalty with paparazzi following your every move. You don&#8217;t ask for it; it&#8217;s just sort of a birthright and a burden, whichever way you look at it &#8212; they seem to go hand-in-hand.</p>
<p>What I love about the camera is that it&#8217;s like staring back.  Being a photographer means you are like a voyeur, capturing other&#8217;s most private moments. One simple glance or expression, as they saying goes, captures a thousand words. Connolly has taken the stranger&#8217;s stare and turned it back on them. It&#8217;s rather empowering to turn the investigated into the investigator.  If I were Petra Kuppers, I&#8217;d be performing. If I were Estee Klar, I&#8217;d be writing. It&#8217;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:</p>
<p><span style="color: #008000;">&#8220;What&#8217;s wrong,&#8221; [Beth] asked softly, her hand on my back.<br />
&#8220;I don&#8217;t think I can shoot this anymore.&#8221;<br />
&#8220;Why not?&#8221;<br />
&#8220;I think I&#8217;m hurting people.&#8221;<br />
&#8220;How?&#8221;<br />
&#8220;People think I&#8217;m a beggar of someone who was hurt here.&#8221;<br />
&#8220;Well, yeah. Maybe some people. But that doesn&#8217;t make you any more of a beggar than you were a month ago. You and I know who you are, so don&#8217;t let it get to you.&#8221;<br />
&#8220;Yeah, but I&#8217;m using them for the photos.&#8221;<br />
&#8220;So? It&#8217;s not as if their entire day is ruined or anything. You&#8217;re getting too wrapped up in everything. If you stop shooting and just quit, you&#8217;re going to hate yourself forever.&#8221;</span> (p. 198)</p>
<p>It&#8217;s a question of art to a certain extent &#8212; 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 &#8212; 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&#8217;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 &#8212; why they &#8220;have&#8221; autism, where it &#8220;comes&#8221; from, or <em>why</em> they should have access to that school or that aide.</p>
<p>As a writer who likes to write about certain instances in our day-to-day lives &#8212; from the person who stares at Adam&#8217;s wildly flapping hands, to the friend whose account I once used about, when I was new to autism writing and the idea of &#8220;normal,&#8221; <em>her </em>desire to change the appearance of her child&#8217;s ears (I used the story about our quest to make our children appear indistinguishable and in Adam&#8217;s case, it&#8217;s simply impossible) &#8212; it&#8217;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&#8217;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&#8217;s. These projects help us understand life from a different perspective, and because it has been &#8220;done to him,&#8221; 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.</p>
<p>In his <em>Epilogue</em>, Connolly reflects how the looks, no matter how experienced or hardened we become, still effect him:</p>
<p><span style="color: #008000;">&#8220;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&#8217;t want to talk about my lacking legs. </span></p>
<p><span style="color: #008000;">Maybe it&#8217;s because dialogue has a tough time blooming when it&#8217;s about negative space. There&#8217;s only so much you can discuss about something that isn&#8217;t there, and isn&#8217;t forthcoming. And rather than try to make a bad riff on a Beckett play, I&#8217;d prefer to end this page with what I do have&#8230;</span></p>
<p><span style="color: #008000;">So maybe the reason I&#8217;ve been so frustrated at times by the question What the hell happened to you? <strong>[what caused your son's autism? -- my interjection here]</strong> is because it&#8217;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.</span></p>
<p><span style="color: #008000;">Perhaps Where the hell did you come from? is what we all should be asking.&#8221;</span> (pp.226-27)</p>
<p>I would agree. It would be nice to be asked that question rather than &#8220;what happened&#8221; to us, even though autism is certainly a part of our lives. The question is, <em>Do you see me?</em> For Adam and I, and Kevin Michael Connolly, it seems, it means the whole package. </p>
<p>&#8212;-</p>
<p>Kevin Michael Connolly, <strong>Double Take: A Memoir</strong>, New York: Harper Collins, 2009.</p>
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