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	<title>Judith Levine &#124; What's New &#187; disability</title>
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		<title>Chronic Insanity</title>
		<link>http://www.judithlevine.com/2009/06/poli-psy-chronic-insanity/</link>
		<comments>http://www.judithlevine.com/2009/06/poli-psy-chronic-insanity/#comments</comments>
		<pubDate>Fri, 26 Jun 2009 10:42:42 +0000</pubDate>
		<dc:creator>Judith</dc:creator>
				<category><![CDATA[Recent writing]]></category>
		<category><![CDATA[disability]]></category>
		<category><![CDATA[family]]></category>
		<category><![CDATA[health care]]></category>

		<guid isPermaLink="false">http://judithlevine.com/?p=584</guid>
		<description><![CDATA[<a href="http://www.judithlevine.com/2009/06/poli-psy-chronic-insanity/"><img align="left" hspace="5" width="150" src="http://judithlevine.com/wp-content/uploads/2009/06/polipsy_182-233x300.jpg" class="alignleft wp-post-image tfe" alt="polipsy_182" title="polipsy_182" /></a>Our so-called health-care “system” promotes and exploits the peculiar American illusion that the body is invulnerable and the spirit autonomous; that human need is a temporary aberration.]]></description>
			<content:encoded><![CDATA[<p> <br />
<img class="alignright size-medium wp-image-590" title="polipsy_182" src="http://judithlevine.com/wp-content/uploads/2009/06/polipsy_182-233x300.jpg" alt="polipsy_182" width="233" height="300" /> In the health-care debate, there are two kinds of people: those who are sick and those who will be sick. The problem is, most Americans, especially young ones, refuse to acknowledge their membership in the second category. Our so-called health-care “system” promotes and exploits this peculiar American illusion: that the body is invulnerable and the spirit autonomous; that human need is a temporary aberration.</p>
<p>I have recently been walloped by human need, its depth and constancy. For the better part of the past three months I have been caring for my mother. At nearly 90, Mom was taking care of her own business. Retired after 45 years’ work in nonprofit organizations, she managed her finances, walked two miles a day, read two books a week, volunteered at a public garden, handed out leaflets for peace, practiced the piano and pursued a social life that would exhaust Paris Hilton.</p>
<p>Then, at about 4 a.m. one Sunday in March, three blood clots traveled from her heart to her brain. The stroke knocked out her short-term memory, most of her sight and her ability to reason reliably. Since then, my mother has been unable to read or play the piano. She cannot remember her grandson’s name, make a piece of toast or leave the house alone. She needs full-time care.</p>
<p>The hour my mother went into the ER, my life was virtually supplanted by hers: first her hospitalization and rehab, then the oversight of her care, her money and her household, which has meant piecing together the details of a now only vaguely remembered existence, from medication schedules to email password. And all the while, I have carried my mother’s immense grief and distress at the radical transformation of her self.</p>
<p>In spite of the fact that she has had home health aides with her from the day she returned home, I have been almost unable to work; I can barely think. My partner, Paul, has assumed a huge part of the burden. But it is still not enough. If I am not to go broke or crazy, we will have to pay someone else to assume my mother’s care.</p>
<p>If she lives a few years, such professional assistance will devour every penny of her savings. After that, she will go on Medicaid, at which point the quality of her care may precipitously decline. Health insurance does not pay for chronic care.</p>
<p>Our <a href="http://www.judithlevine.com/tag/family/" class="st_tag internal_tag" rel="tag" title="Posts tagged with family">family</a>’s situation is ordinary. In 2004 there were an estimated 44 million <a href="http://www.judithlevine.com/tag/family/" class="st_tag internal_tag" rel="tag" title="Posts tagged with family">family</a> caregivers in the U.S. Some families supplement this work with paid home aides. The dedication, competence and kindness of many of these workers belie the paltriness of their pay: rarely more than $10 an hour, often for 24-hour shifts. But others are untrained and uninterested, and their wages are beyond the means of most families anyway. Those who can afford paid care are not off the hook. The fragile systems regularly break down, and with each crisis everyone’s health, sanity and money take a hit.</p>
<p><a href="http://www.judithlevine.com/tag/disability/" class="st_tag internal_tag" rel="tag" title="Posts tagged with disability">Disability</a> rights activists call us sighted, hearing, mobile bipeds the “currently able.” What they know is that autonomy, the cornerstone of Western ethics and personhood, is a myth. Sooner or later we will all be in some way halt, in some way blind, and neither science nor the grace of God will prevent us from going where the currently disabled already are. In the meantime, we already are what they are: dependent, from our first breaths to our last.</p>
<p>Paradoxically, our dependence may be more acute in this age of Web-shopping, tax-resisting, single-person-householding consumer-citizenship than it was when we hunted in packs and dragged home a bison for the communal feast. Back then you didn’t survive long without the help of others. Today, you need the help of others because you survive so long. Modern medicine has all but defeated premature death from acute illness; we stay healthy for more years. The irony of this accomplishment is that we will be sicker later, and for longer. We can count on surviving seven, eight, even nine decades, but an American who reached the age of 65 in 1996 can also expect an average of more than five years of “dysfunction,” probably from a chronic illness, before she dies. “Much of the peculiar pathos of aging in American culture,” notes historian <a rel="nofollow" href="http://www.uth.tmc.edu/hhhs/faculty/bio-Cole-Thomas.html">Thomas R. Cole</a> in <em><a rel="nofollow" href="http://books.google.com/books?id=WolWQEb0fMkC&amp;dq=The+Journey+of+Life:+A+Cultural+History+of+Aging+in+America&amp;printsec=frontcover&amp;source=bl&amp;ots=zVp3Pl1EJ3&amp;sig=SHZpYHX0dwAAlSEkRaCKKTD2U5o&amp;hl=en&amp;ei=mChBStf4L8folAfwvvzuCA&amp;sa=X&amp;oi=book_result&amp;ct=result&amp;resnum=1">The Journey of Life: A Cultural History of Aging in America</a></em>, “derives from the denial of this new fate.”</p>
<p>The new fate is the same as the old one. As University of Missouri sociologist <a rel="nofollow" href="http://sociology.missouri.edu/New%20Website%20WWW/Faculty%20and%20Staff/Jaber_Gubrium.html">Jaber Gubrium</a> once told me, “Failure is a natural part of life.” So if we fail — <em>when</em> we fail — who is responsible for picking us up? <a rel="nofollow" href="http://www.nursing.upenn.edu/faculty/profile.asp?pID=125">Karen Buhler-Wilkerson</a>, professor emeritus at the University of Pennsylvania School of Nursing and a historian of home care, says there’s a loose consensus in America that the family should do it, with a little help from the state. But that’s as far as we’ve gotten after a century of irresolution. Charity and the profit motive, individualism and personal desperation, left and right continue to duke it out. What never happens is the establishment of an adequately funded, integrated system of care similar to those in almost every other developed country.</p>
<p>“In the absence of the requisite public will,” writes Buhler-Wilkerson, “our stance appears to be one of waiting for a complete breakdown of long-term care before definitive action will be taken in response to the needs of the present and growing aging and chronically ill population.”</p>
<p>Policymakers and advocates have recently taken a step. They’ve realized that home care is cheaper than institutionalization. That’s why many states, including Vermont, now allow Medicare payments to family members who care for the ill or aged at home. But those payments are few and small, and anyway the savings are based on a false economy. Yearly, family caregivers provide an estimated $257 billion in unpaid care.</p>
<p>Who are those family caregivers? Need you ask?</p>
<p>They’re the same people who provide free childcare and housework: wives, daughters, grandmothers, sisters, nieces and female domestic partners. Paul is an exception among men. Indeed, everywhere in the world, almost to a person, caregivers are female.</p>
<p>Americans imagine we will never become old, sick or dependent. But just in case we do, Mommy will kiss the boo-boo. These two fantasies strike me as related. Even as we figure ourselves self-made and self-reliant, we are, as social beings, infantile. Nowhere are we more attached to the delusion of our perpetual youth than where our bodies are concerned. Cosmetic surgery, Viagra, stem cells: These will keep us vital forever.</p>
<p>Small children do not understand death; they believe Grandma or the pet hamster is only sleeping. Adolescents think they’re unbreakable; they’ll take any drug or any dare. But growing old means recognizing your frailties. Growing up means facing your death.</p>
<p>There are many political, economic and bureaucratic obstacles to universal <a href="http://www.judithlevine.com/tag/health-care/" class="st_tag internal_tag" rel="tag" title="Posts tagged with health care">health care</a> in the U.S. — powerful insurance lobbies, fee-for-service medicine, budget-cutting mania. But these are trifles compared to the real obstacle: our dumb faith in ourselves.</p>
<p>Americans are showing signs of readiness for health-care reform. A <em>New York Times</em>/CBS poll last week found overwhelming support for a public insurance option, as well as trust in the government to do it right. Two-thirds of respondents said covering everyone is more important than controlling costs. Will we actually do it? And will we as a nation ever assume responsibility for people like my mother, whose troubles are neither curable nor fatal? Desperation may finally get us there.</p>
<p>But as long as we cannot give up the fiction that we are invulnerable and autonomous, we will fail to provide ourselves collective security. As long as we deny our mortality, we will condemn ourselves to die alone. </p>
<p>This column originally appeared in <a href="http://www.7dvt.com/2009chronic-insanity">Seven Days</a>.</p>

	Tags: <a href="http://www.judithlevine.com/tag/disability/" title="disability" rel="tag">disability</a>, <a href="http://www.judithlevine.com/tag/family/" title="family" rel="tag">family</a>, <a href="http://www.judithlevine.com/tag/health-care/" title="health care" rel="tag">health care</a><br />
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		<title>Decent Exposure?</title>
		<link>http://www.judithlevine.com/2009/05/decent-exposure/</link>
		<comments>http://www.judithlevine.com/2009/05/decent-exposure/#comments</comments>
		<pubDate>Fri, 01 May 2009 12:28:15 +0000</pubDate>
		<dc:creator>Judith</dc:creator>
				<category><![CDATA[Poli Psy: my column]]></category>
		<category><![CDATA[child protection]]></category>
		<category><![CDATA[disability]]></category>
		<category><![CDATA[pornography]]></category>
		<category><![CDATA[sexuality]]></category>
		<category><![CDATA[teens]]></category>

		<guid isPermaLink="false">http://judithlevine.com/?p=547</guid>
		<description><![CDATA[<a href="http://www.judithlevine.com/2009/05/decent-exposure/"><img align="left" hspace="5" width="150" src="http://judithlevine.com/wp-content/uploads/2009/05/decentex-200x300.jpg" class="alignleft wp-post-image tfe" alt="decentex" title="decentex" /></a>First the Keystone Komstocks started protecting teens from themselves by arresting them on child porn charges for  "sexting."

Now a Massachusetts legislator would criminalize the photographing of people over 60 and those with disabilities. Such adults would be statutorily unable to consent.

Sex crimes law is like a black hole: Once reason falls in, it can never re-emerge.]]></description>
			<content:encoded><![CDATA[<h1 class="title"><img class="alignright size-medium wp-image-557" title="decentex" src="http://judithlevine.com/wp-content/uploads/2009/05/decentex-200x300.jpg" alt="decentex" width="200" height="300" /></h1>
<p>I’ve been peeved all month about the latest panic: <a rel="nofollow" href="http://www.cbsnews.com/stories/2009/01/15/national/main4723161.shtml">“sexting.”</a> More and more states are bringing child-porn charges against teenagers who take racy pictures of themselves and send them electronically to lovers or pals. Child <a href="http://www.judithlevine.com/tag/pornography/" class="st_tag internal_tag" rel="tag" title="Posts tagged with pornography">pornography</a> is a far more serious crime — in terms of penalties, anyway — than is having actual sex. Sentences run to years per image, and after prison the person must register as a sex offender, a kind of life sentence in itself.</p>
<p>You might call sexting a dunderheaded act — who knows where your immortalized nipples might end up — but also a victimless “crime.” Yet here is the amazing part: Child-porn law is based on the minor’s inability to consent to being photographed; the model is ipso facto a victim of the photographer. Sexting, in which the model is also the photographer, is a crime in which a person can be <em>both perpetrator and victim at the same time. </em></p>
<p>U.S. sex law is like a black hole: Once reason falls in, it can never re-emerge.</p>
<p><em>Can all this get any stupider?</em> Just as I was asking myself this question, a post arrived from sex therapist Marty Klein’s blog, <em><a rel="nofollow" href="http://www.sexualintelligence.wordpress.com/2009/04/02/massachusetts-tries-to-be-world%E2%80%99s-sex-crime-capital/">Sexual Intelligence</a></em>, confirming that it could:</p>
<blockquote><p>Massachusetts state representative <a rel="nofollow" href="http://www.mass.gov/legis/member/k_r1.htm">Kathi-Anne Reinstein</a> (D-Revere) has introduced a bill making it a crime for anyone over 60 to pose nude or sexually for a film or photo. The person taking the photo — whether a lover, artist or commercial porn maker — would also face jail time.</p>
<p>Adding insult to injury, the proposal amends a bill designed to punish those who make child pornography. It treats fully functional adults who happen to be over 60 the same as children under 18; it explicitly takes away their right to consent to be photographed in a lascivious way.</p></blockquote>
<p>What Klein doesn’t mention is that the bill precludes consent not only by “an elder” but also by “a person with a <a href="http://www.judithlevine.com/tag/disability/" class="st_tag internal_tag" rel="tag" title="Posts tagged with disability">disability</a>.” Massachusetts law defines an elder as someone over 60; a “<a href="http://www.judithlevine.com/tag/disability/" class="st_tag internal_tag" rel="tag" title="Posts tagged with disability">disability</a>” is “a permanent or long-term physical or mental impairment that prevents or restricts the individual’s ability to provide for his or her own care or protection.” The bill is an obvious violation of the First Amendment, says Florida Constitutional lawyer <a rel="nofollow" href="http://randazza.wordpress.com/">Marc Randazzo</a>, who notes that among the consent-stripped could be his own mother, whom he describes as a 60-plus sexually active “knockout” with a lung condition. Representative Reinstein, by the way, is 38.</p>
<p>We can hope this idea languishes in committee — and, if not, is ridiculed to death. Yet, once impassioned, Reinstein does not rest. Her 2006 proposal to honor the <a rel="nofollow" href="http://www.wickedlocal.com/somerville/archive/x955242339/Fluffernutter-the-official-sandwich-of-Massachusetts">Fluffernutter</a> as the state sandwich failed; it is back on this session’s calendar. Now that senior advocacy groups have informed her “elder exploitation and pornography is on the rise,” she told the <em>Boston Herald</em>, the necessity of her new bill is a “no-brainer.” This is an indisputable fact.</p>
<p>It is axiomatic that anything you want to outlaw is widespread, on the rise or both. Once reported, the proliferation of said pernicious activity will be re-reported until it becomes “fact,” with or without substantiation. Like elder porn, sexting is alleged to be widespread and increasing. Among many others, CBS News recently told its audience that “roughly 20 percent of <a href="http://www.judithlevine.com/tag/teens/" class="st_tag internal_tag" rel="tag" title="Posts tagged with teens">teens</a> admit to participating in ‘sexting,’ according to a nationwide survey by the <a rel="nofollow" href="http://www.thenationalcampaign.org/">National Campaign to Support Teen and Unplanned Pregnancy</a>.” It called sexting “shockingly common.”</p>
<p>Is 20 percent shocking or common? Is the number even accurate? Journalist Debbie Nathan did what every reporter should: She checked the source. Turns out the datum was derived from a grand total of 653 survey respondents ages 13 to 19. These kids were among a randomly selected subgroup of a self-selected pool of 375,000 teens and young adults who have told a polling outfit called TRU that they’re willing to answer online surveys. Of the young people TRU sent questions regarding their electronic sex lives, 90 percent chose not to respond. But 653 teens were moved to disclose, and about one-fifth said they sent sexy self-portraits to lovers and friends.</p>
<p>Bill Albert, the Campaign’s chief program officer, defends the survey’s credibility but stresses that it “represents just one point in time. For all we know, the practice could be decreasing.” Yet sexting prosecutions are proliferating as fast as sexting is rumored to be. And by the time Reinstein’s bill reappears, granny porn will also be recognized as a serious public safety threat, warranting strong laws to combat it. Mark my word.</p>
<p>It is easy to make fun of the Keystone Komstocks who write and enforce vice laws. Yet this recent pair of virtue-rescue missions deserves serious attention because the same misguided principle lurks behind both efforts.</p>
<p>That is, anyone who displays her body in a sexual way cannot possibly be doing so on her own volition. Somebody somewhere must be coercing her to remove her clothes, dance around the pole or aim the camera and press “send.” That the disrober-aimer-sender is usually female only compounds the suspicion that she is not in possession of her own mind and body.</p>
<p>Nearly three decades ago, pro-sex feminists defeated two municipal ordinances enshrining the idea that pornography is violence against women. Adults generally have refused to be protected from self-exhibition for fun or profit. Voyeurism is also a popular entertainment: Commercial pornography, one of the enduring legacies of the sexual-liberation movement, is flourishing. Sexting, you might say, is a 21st-century offspring of both these phenomena. For better or worse, pornographic tropes, including the defining elements of exhibitionism and voyeurism, are part of the lingua franca of teen sexual self-expression. And the digital revolution has turned every girl, boy, woman, man or transperson into a potential pornographer.</p>
<p>These truths are evidently disturbing to America’s upholders of decency. Turning their attentions from adults to children, they’ve vastly expanded the universe of minors in need of supervision. Everywhere, the sexual age of consent has risen from 13 or 14 to 16 or 18. Clipped at the bottom, the age of sexual majority might now be shorn at the top — at 60 — and around the edges, where bodies and minds have differing abilities.</p>
<p>Older and disabled people have long been infantilized, and sexual neutering is part of it. They (or should I say <em>we</em>; I’m 56) are considered cute, weak and dim — also attributes of innocence, which is to say ignorance and incompetence. This condescension shows itself in various forms of discrimination, which has led to the designation of the disabled and people over 40 as “protected classes” — legal categories of people, such as racial or religious minorities, who may suffer discrimination based solely on who they are.</p>
<p>But legal <em>protection</em> often is distorted into legal <em>protectionism</em>. As in anti-sexting and elder-porn laws, that usually means protecting people from themselves.</p>
<p>“Never in my wildest dreams did I imagine a 16-year-old taking a semi-nude picture of herself and sending it to her 17-year-old boyfriend would be prosecuted under child-pornography laws,” Bill Albert told me. Neither, apparently, did Vermont’s legislators. They are now scrambling to carve out an exception to state child-porn laws that decriminalizes the consensual exchange of graphic images between people 13 to 18 years old.</p>
<p>Although skeptics are already worrying that “predators” will get in on the sexting game, I predict the amendment will pass. Vermont has been more lenient to juveniles than have other states. But at the same time, we can expect to see more sexual behaviors criminalized — and more classes of people protected from what might be their own desires. This year, in clauses regarding sex-crimes victims, the phrase “or a person with a mental illness or disability” has been inserted after “a child 13 years of age or under.” That could be a good thing, guarding people who really need it, and Vermont’s legal definition of mental disability is far narrower than Massachusetts’. But who will define the consent of the disabled? And what will we be shielded from next? Baby-boomer porn?</p>
<p>And then, what will the next legal do-over look like, as the state attempts to scrub its politically motivated, unnecessary and harmful sex-crimes laws of their unintended consequences?</p>
<p>This column originally ran in<a href="http://www.7dvt.com/2009decent-exposure"> Seven Days</a>.</p>

	Tags: <a href="http://www.judithlevine.com/tag/child-protection/" title="child protection" rel="tag">child protection</a>, <a href="http://www.judithlevine.com/tag/disability/" title="disability" rel="tag">disability</a>, <a href="http://www.judithlevine.com/tag/pornography/" title="pornography" rel="tag">pornography</a>, <a href="http://www.judithlevine.com/tag/sexuality/" title="sexuality" rel="tag">sexuality</a>, <a href="http://www.judithlevine.com/tag/teens/" title="teens" rel="tag">teens</a><br />
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