Letteratura scientifica selezionata sul tema "Medical policy Social aspects Great Britain History 20th century"

Introduction: Our current obsession with the lives of others “Biography—that is to say, our creative and non-fictional output devoted to recording and interpreting real lives—has enjoyed an extraordinary renaissance in recent years,” writes Nigel Hamilton in Biography: A Brief History (1). Ian Donaldson agrees that biography is back in fashion: “Once neglected within the academy and relegated to the dustier recesses of public bookstores, biography has made a notable return over recent years, emerging, somewhat surprisingly, as a new cultural phenomenon, and a new academic adventure” (23). For over a decade now, commentators having been making similar observations about our obsession with the intimacies of individual people’s lives. In a lecture in 1994, Justin Kaplan asserted the West was “a culture of biography” (qtd. in Salwak 1) and more recent research findings by John Feather and Hazel Woodbridge affirm that “the undiminished human curiosity about other peoples lives is clearly reflected in the popularity of autobiographies and biographies” (218). At least in relation to television, this assertion seems valid. In Australia, as in the USA and the UK, reality and other biographically based television shows have taken over from drama in both the numbers of shows produced and the viewers these shows attract, and these forms are also popular in Canada (see, for instance, Morreale on The Osbournes). In 2007, the program Biography celebrated its twentieth anniversary season to become one of the longest running documentary series on American television; so successful that in 1999 it was spun off into its own eponymous channel (Rak; Dempsey). Premiered in May 1996, Australian Story—which aims to utilise a “personal approach” to biographical storytelling—has won a significant viewership, critical acclaim and professional recognition (ABC). It can also be posited that the real home movies viewers submit to such programs as Australia’s Favourite Home Videos, and “chat” or “confessional” television are further reflections of a general mania for biographical detail (see Douglas), no matter how fragmented, sensationalized, or even inane and cruel. A recent example of the latter, the USA-produced The Moment of Truth, has contestants answering personal questions under polygraph examination and then again in front of an audience including close relatives and friends—the more “truthful” their answers (and often, the more humiliated and/or distressed contestants are willing to be), the more money they can win. Away from television, but offering further evidence of this interest are the growing readerships for personally oriented weblogs and networking sites such as MySpace and Facebook (Grossman), individual profiles and interviews in periodical publications, and the recently widely revived newspaper obituary column (Starck). Adult and community education organisations run short courses on researching and writing auto/biographical forms and, across Western countries, the family history/genealogy sections of many local, state, and national libraries have been upgraded to meet the increasing demand for these services. Academically, journals and e-mail discussion lists have been established on the topics of biography and autobiography, and North American, British, and Australian universities offer undergraduate and postgraduate courses in life writing. The commonly aired wisdom is that published life writing in its many text-based forms (biography, autobiography, memoir, diaries, and collections of personal letters) is enjoying unprecedented popularity. It is our purpose to examine this proposition. Methodological problems There are a number of problems involved in investigating genre popularity, growth, and decline in publishing. Firstly, it is not easy to gain access to detailed statistics, which are usually only available within the industry. Secondly, it is difficult to ascertain how publishing statistics are gathered and what they report (Eliot). There is the question of whether bestselling booklists reflect actual book sales or are manipulated marketing tools (Miller), although the move from surveys of booksellers to electronic reporting at point of sale in new publishing lists such as BookScan will hopefully obviate this problem. Thirdly, some publishing lists categorise by subject and form, some by subject only, and some do not categorise at all. This means that in any analysis of these statistics, a decision has to be made whether to use the publishing list’s system or impose a different mode. If the publishing list is taken at face value, the question arises of whether to use categorisation by form or by subject. Fourthly, there is the bedeviling issue of terminology. Traditionally, there reigned a simple dualism in the terminology applied to forms of telling the true story of an actual life: biography and autobiography. Publishing lists that categorise their books, such as BookScan, have retained it. But with postmodern recognition of the presence of the biographer in a biography and of the presence of other subjects in an autobiography, the dichotomy proves false. There is the further problem of how to categorise memoirs, diaries, and letters. In the academic arena, the term “life writing” has emerged to describe the field as a whole. Within the genre of life writing, there are, however, still recognised sub-genres. Academic definitions vary, but generally a biography is understood to be a scholarly study of a subject who is not the writer; an autobiography is the story of a entire life written by its subject; while a memoir is a segment or particular focus of that life told, again, by its own subject. These terms are, however, often used interchangeably even by significant institutions such the USA Library of Congress, which utilises the term “biography” for all. Different commentators also use differing definitions. Hamilton uses the term “biography” to include all forms of life writing. Donaldson discusses how the term has been co-opted to include biographies of place such as Peter Ackroyd’s London: The Biography (2000) and of things such as Lizzie Collingham’s Curry: A Biography (2005). This reflects, of course, a writing/publishing world in which non-fiction stories of places, creatures, and even foodstuffs are called biographies, presumably in the belief that this will make them more saleable. The situation is further complicated by the emergence of hybrid publishing forms such as, for instance, the “memoir-with-recipes” or “food memoir” (Brien, Rutherford and Williamson). Are such books to be classified as autobiography or put in the “cookery/food & drink” category? We mention in passing the further confusion caused by novels with a subtitle of The Biography such as Virginia Woolf’s Orlando. The fifth methodological problem that needs to be mentioned is the increasing globalisation of the publishing industry, which raises questions about the validity of the majority of studies available (including those cited herein) which are nationally based. Whether book sales reflect what is actually read (and by whom), raises of course another set of questions altogether. Methodology In our exploration, we were fundamentally concerned with two questions. Is life writing as popular as claimed? And, if it is, is this a new phenomenon? To answer these questions, we examined a range of available sources. We began with the non-fiction bestseller lists in Publishers Weekly (a respected American trade magazine aimed at publishers, librarians, booksellers, and literary agents that claims to be international in scope) from their inception in 1912 to the present time. We hoped that this data could provide a longitudinal perspective. The term bestseller was coined by Publishers Weekly when it began publishing its lists in 1912; although the first list of popular American books actually appeared in The Bookman (New York) in 1895, based itself on lists appearing in London’s The Bookman since 1891 (Bassett and Walter 206). The Publishers Weekly lists are the best source of longitudinal information as the currently widely cited New York Times listings did not appear till 1942, with the Wall Street Journal a late entry into the field in 1994. We then examined a number of sources of more recent statistics. We looked at the bestseller lists from the USA-based Amazon.com online bookseller; recent research on bestsellers in Britain; and lists from Nielsen BookScan Australia, which claims to tally some 85% or more of books sold in Australia, wherever they are published. In addition to the reservations expressed above, caveats must be aired in relation to these sources. While Publishers Weekly claims to be an international publication, it largely reflects the North American publishing scene and especially that of the USA. Although available internationally, Amazon.com also has its own national sites—such as Amazon.co.uk—not considered here. It also caters to a “specific computer-literate, credit-able clientele” (Gutjahr: 219) and has an unashamedly commercial focus, within which all the information generated must be considered. In our analysis of the material studied, we will use “life writing” as a genre term. When it comes to analysis of the lists, we have broken down the genre of life writing into biography and autobiography, incorporating memoir, letters, and diaries under autobiography. This is consistent with the use of the terminology in BookScan. Although we have broken down the genre in this way, it is the overall picture with regard to life writing that is our concern. It is beyond the scope of this paper to offer a detailed analysis of whether, within life writing, further distinctions should be drawn. Publishers Weekly: 1912 to 2006 1912 saw the first list of the 10 bestselling non-fiction titles in Publishers Weekly. It featured two life writing texts, being headed by an autobiography, The Promised Land by Russian Jewish immigrant Mary Antin, and concluding with Albert Bigelow Paine’s six-volume biography, Mark Twain. The Publishers Weekly lists do not categorise non-fiction titles by either form or subject, so the classifications below are our own with memoir classified as autobiography. In a decade-by-decade tally of these listings, there were 3 biographies and 20 autobiographies in the lists between 1912 and 1919; 24 biographies and 21 autobiographies in the 1920s; 13 biographies and 40 autobiographies in the 1930s; 8 biographies and 46 biographies in the 1940s; 4 biographies and 14 autobiographies in the 1950s; 11 biographies and 13 autobiographies in the 1960s; 6 biographies and 11 autobiographies in the 1970s; 3 biographies and 19 autobiographies in the 1980s; 5 biographies and 17 autobiographies in the 1990s; and 2 biographies and 7 autobiographies from 2000 up until the end of 2006. See Appendix 1 for the relevant titles and authors. Breaking down the most recent figures for 1990–2006, we find a not radically different range of figures and trends across years in the contemporary environment. The validity of looking only at the top ten books sold in any year is, of course, questionable, as are all the issues regarding sources discussed above. But one thing is certain in terms of our inquiry. There is no upwards curve obvious here. If anything, the decade break-down suggests that sales are trending downwards. This is in keeping with the findings of Michael Korda, in his history of twentieth-century bestsellers. He suggests a consistent longitudinal picture across all genres: In every decade, from 1900 to the end of the twentieth century, people have been reliably attracted to the same kind of books […] Certain kinds of popular fiction always do well, as do diet books […] self-help books, celebrity memoirs, sensationalist scientific or religious speculation, stories about pets, medical advice (particularly on the subjects of sex, longevity, and child rearing), folksy wisdom and/or humour, and the American Civil War (xvii). Amazon.com since 2000 The USA-based Amazon.com online bookselling site provides listings of its own top 50 bestsellers since 2000, although only the top 14 bestsellers are recorded for 2001. As fiction and non-fiction are not separated out on these lists and no genre categories are specified, we have again made our own decisions about what books fall into the category of life writing. Generally, we erred on the side of inclusion. (See Appendix 2.) However, when it came to books dealing with political events, we excluded books dealing with specific aspects of political practice/policy. This meant excluding books on, for instance, George Bush’s so-called ‘war on terror,’ of which there were a number of bestsellers listed. In summary, these listings reveal that of the top 364 books sold by Amazon from 2000 to 2007, 46 (or some 12.6%) were, according to our judgment, either biographical or autobiographical texts. This is not far from the 10% of the 1912 Publishers Weekly listing, although, as above, the proportion of bestsellers that can be classified as life writing varied dramatically from year to year, with no discernible pattern of peaks and troughs. This proportion tallied to 4% auto/biographies in 2000, 14% in 2001, 10% in 2002, 18% in 2003 and 2004, 4% in 2005, 14% in 2006 and 20% in 2007. This could suggest a rising trend, although it does not offer any consistent trend data to suggest sales figures may either continue to grow, or fall again, in 2008 or afterwards. Looking at the particular texts in these lists (see Appendix 2) also suggests that there is no general trend in the popularity of life writing in relation to other genres. For instance, in these listings in Amazon.com, life writing texts only rarely figure in the top 10 books sold in any year. So rarely indeed, that from 2001 there were only five in this category. In 2001, John Adams by David McCullough was the best selling book of the year; in 2003, Hillary Clinton’s autobiographical Living History was 7th; in 2004, My Life by Bill Clinton reached number 1; in 2006, Nora Ephron’s I Feel Bad About My Neck: and Other Thoughts on Being a Woman was 9th; and in 2007, Ishmael Beah’s discredited A Long Way Gone: Memoirs of a Boy Soldier came in at 8th. Apart from McCulloch’s biography of Adams, all the above are autobiographical texts, while the focus on leading political figures is notable. Britain: Feather and Woodbridge With regard to the British situation, we did not have actual lists and relied on recent analysis. John Feather and Hazel Woodbridge find considerably higher levels for life writing in Britain than above with, from 1998 to 2005, 28% of British published non-fiction comprising autobiography, while 8% of hardback and 5% of paperback non-fiction was biography (2007). Furthermore, although Feather and Woodbridge agree with commentators that life writing is currently popular, they do not agree that this is a growth state, finding the popularity of life writing “essentially unchanged” since their previous study, which covered 1979 to the early 1990s (Feather and Reid). Australia: Nielsen BookScan 2006 and 2007 In the Australian publishing industry, where producing books remains an ‘expensive, risky endeavour which is increasingly market driven’ (Galligan 36) and ‘an inherently complex activity’ (Carter and Galligan 4), the most recent Australian Bureau of Statistics figures reveal that the total numbers of books sold in Australia has remained relatively static over the past decade (130.6 million in the financial year 1995–96 and 128.8 million in 2003–04) (ABS). During this time, however, sales volumes of non-fiction publications have grown markedly, with a trend towards “non-fiction, mass market and predictable” books (Corporall 41) resulting in general non-fiction sales in 2003–2004 outselling general fiction by factors as high as ten depending on the format—hard- or paperback, and trade or mass market paperback (ABS 2005). However, while non-fiction has increased in popularity in Australia, the same does not seem to hold true for life writing. Here, in utilising data for the top 5,000 selling non-fiction books in both 2006 and 2007, we are relying on Nielsen BookScan’s categorisation of texts as either biography or autobiography. In 2006, no works of life writing made the top 10 books sold in Australia. In looking at the top 100 books sold for 2006, in some cases the subjects of these works vary markedly from those extracted from the Amazon.com listings. In Australia in 2006, life writing makes its first appearance at number 14 with convicted drug smuggler Schapelle Corby’s My Story. This is followed by another My Story at 25, this time by retired Australian army chief, Peter Cosgrove. Jonestown: The Power and Myth of Alan Jones comes in at 34 for the Australian broadcaster’s biographer Chris Masters; the biography, The Innocent Man by John Grisham at 38 and Li Cunxin’s autobiographical Mao’s Last Dancer at 45. Australian Susan Duncan’s memoir of coping with personal loss, Salvation Creek: An Unexpected Life makes 50; bestselling USA travel writer Bill Bryson’s autobiographical memoir of his childhood The Life and Times of the Thunderbolt Kid 69; Mandela: The Authorised Portrait by Rosalind Coward, 79; and Joanne Lees’s memoir of dealing with her kidnapping, the murder of her partner and the justice system in Australia’s Northern Territory, No Turning Back, 89. These books reveal a market preference for autobiographical writing, and an almost even split between Australian and overseas subjects in 2006. 2007 similarly saw no life writing in the top 10. The books in the top 100 sales reveal a downward trend, with fewer titles making this band overall. In 2007, Terri Irwin’s memoir of life with her famous husband, wildlife warrior Steve Irwin, My Steve, came in at number 26; musician Andrew Johns’s memoir of mental illness, The Two of Me, at 37; Ayaan Hirst Ali’s autobiography Infidel at 39; John Grogan’s biography/memoir, Marley and Me: Life and Love with the World’s Worst Dog, at 42; Sally Collings’s biography of the inspirational young survivor Sophie Delezio, Sophie’s Journey, at 51; and Elizabeth Gilbert’s hybrid food, self-help and travel memoir, Eat, Pray, Love: One Woman’s Search for Everything at 82. Mao’s Last Dancer, published the year before, remained in the top 100 in 2007 at 87. When moving to a consideration of the top 5,000 books sold in Australia in 2006, BookScan reveals only 62 books categorised as life writing in the top 1,000, and only 222 in the top 5,000 (with 34 titles between 1,000 and 1,999, 45 between 2,000 and 2,999, 48 between 3,000 and 3,999, and 33 between 4,000 and 5,000). 2007 shows a similar total of 235 life writing texts in the top 5,000 bestselling books (75 titles in the first 1,000, 27 between 1,000 and 1,999, 51 between 2,000 and 2,999, 39 between 3,000 and 3,999, and 43 between 4,000 and 5,000). In both years, 2006 and 2007, life writing thus not only constituted only some 4% of the bestselling 5,000 titles in Australia, it also showed only minimal change between these years and, therefore, no significant growth. Conclusions Our investigation using various instruments that claim to reflect levels of book sales reveals that Western readers’ willingness to purchase published life writing has not changed significantly over the past century. We find no evidence of either a short, or longer, term growth or boom in sales in such books. Instead, it appears that what has been widely heralded as a new golden age of life writing may well be more the result of an expanded understanding of what is included in the genre than an increased interest in it by either book readers or publishers. What recent years do appear to have seen, however, is a significantly increased interest by public commentators, critics, and academics in this genre of writing. We have also discovered that the issue of our current obsession with the lives of others tends to be discussed in academic as well as popular fora as if what applies to one sub-genre or production form applies to another: if biography is popular, then autobiography will also be, and vice versa. If reality television programming is attracting viewers, then readers will be flocking to life writing as well. Our investigation reveals that such propositions are questionable, and that there is significant research to be completed in mapping such audiences against each other. This work has also highlighted the difficulty of separating out the categories of written texts in publishing studies, firstly in terms of determining what falls within the category of life writing as distinct from other forms of non-fiction (the hybrid problem) and, secondly, in terms of separating out the categories within life writing. Although we have continued to use the terms biography and autobiography as sub-genres, we are aware that they are less useful as descriptors than they are often assumed to be. In order to obtain a more complete and accurate picture, publishing categories may need to be agreed upon, redefined and utilised across the publishing industry and within academia. This is of particular importance in the light of the suggestions (from total sales volumes) that the audiences for books are limited, and therefore the rise of one sub-genre may be directly responsible for the fall of another. Bair argues, for example, that in the 1980s and 1990s, the popularity of what she categorises as memoir had direct repercussions on the numbers of birth-to-death biographies that were commissioned, contracted, and published as “sales and marketing staffs conclude[d] that readers don’t want a full-scale life any more” (17). Finally, although we have highlighted the difficulty of using publishing statistics when there is no common understanding as to what such data is reporting, we hope this study shows that the utilisation of such material does add a depth to such enquiries, especially in interrogating the anecdotal evidence that is often quoted as data in publishing and other studies. Appendix 1 Publishers Weekly listings 1990–1999 1990 included two autobiographies, Bo Knows Bo by professional athlete Bo Jackson (with Dick Schaap) and Ronald Reagan’s An America Life: An Autobiography. In 1991, there were further examples of life writing with unimaginative titles, Me: Stories of My Life by Katherine Hepburn, Nancy Reagan: The Unauthorized Biography by Kitty Kelley, and Under Fire: An American Story by Oliver North with William Novak; as indeed there were again in 1992 with It Doesn’t Take a Hero: The Autobiography of Norman Schwarzkopf, Sam Walton: Made in America, the autobiography of the founder of Wal-Mart, Diana: Her True Story by Andrew Morton, Every Living Thing, yet another veterinary outpouring from James Herriot, and Truman by David McCullough. In 1993, radio shock-jock Howard Stern was successful with the autobiographical Private Parts, as was Betty Eadie with her detailed recounting of her alleged near-death experience, Embraced by the Light. Eadie’s book remained on the list in 1994 next to Don’t Stand too Close to a Naked Man, comedian Tim Allen’s autobiography. Flag-waving titles continue in 1995 with Colin Powell’s My American Journey, and Miss America, Howard Stern’s follow-up to Private Parts. 1996 saw two autobiographical works, basketball superstar Dennis Rodman’s Bad as I Wanna Be and figure-skater, Ekaterina Gordeeva’s (with EM Swift) My Sergei: A Love Story. In 1997, Diana: Her True Story returns to the top 10, joining Frank McCourt’s Angela’s Ashes and prolific biographer Kitty Kelly’s The Royals, while in 1998, there is only the part-autobiography, part travel-writing A Pirate Looks at Fifty, by musician Jimmy Buffet. There is no biography or autobiography included in either the 1999 or 2000 top 10 lists in Publishers Weekly, nor in that for 2005. In 2001, David McCullough’s biography John Adams and Jack Welch’s business memoir Jack: Straight from the Gut featured. In 2002, Let’s Roll! Lisa Beamer’s tribute to her husband, one of the heroes of 9/11, written with Ken Abraham, joined Rudolph Giuliani’s autobiography, Leadership. 2003 saw Hillary Clinton’s autobiography Living History and Paul Burrell’s memoir of his time as Princess Diana’s butler, A Royal Duty, on the list. In 2004, it was Bill Clinton’s turn with My Life. In 2006, we find John Grisham’s true crime (arguably a biography), The Innocent Man, at the top, Grogan’s Marley and Me at number three, and the autobiographical The Audacity of Hope by Barack Obama in fourth place. Appendix 2 Amazon.com listings since 2000 In 2000, there were only two auto/biographies in the top Amazon 50 bestsellers with Lance Armstrong’s It’s Not about the Bike: My Journey Back to Life about his battle with cancer at 20, and Dave Eggers’s self-consciously fictionalised memoir, A Heartbreaking Work of Staggering Genius at 32. In 2001, only the top 14 bestsellers were recorded. At number 1 is John Adams by David McCullough and, at 11, Jack: Straight from the Gut by USA golfer Jack Welch. In 2002, Leadership by Rudolph Giuliani was at 12; Master of the Senate: The Years of Lyndon Johnson by Robert Caro at 29; Portrait of a Killer: Jack the Ripper by Patricia Cornwell at 42; Blinded by the Right: The Conscience of an Ex-Conservative by David Brock at 48; and Louis Gerstner’s autobiographical Who Says Elephants Can’t Dance: Inside IBM’s Historic Turnaround at 50. In 2003, Living History by Hillary Clinton was 7th; Benjamin Franklin: An American Life by Walter Isaacson 14th; Dereliction of Duty: The Eyewitness Account of How President Bill Clinton Endangered America’s Long-Term National Security by Robert Patterson 20th; Under the Banner of Heaven: A Story of Violent Faith by Jon Krakauer 32nd; Leap of Faith: Memoirs of an Unexpected Life by Queen Noor of Jordan 33rd; Kate Remembered, Scott Berg’s biography of Katharine Hepburn, 37th; Who’s your Caddy?: Looping for the Great, Near Great and Reprobates of Golf by Rick Reilly 39th; The Teammates: A Portrait of a Friendship about a winning baseball team by David Halberstam 42nd; and Every Second Counts by Lance Armstrong 49th. In 2004, My Life by Bill Clinton was the best selling book of the year; American Soldier by General Tommy Franks was 16th; Kevin Phillips’s American Dynasty: Aristocracy, Fortune and the Politics of Deceit in the House of Bush 18th; Timothy Russert’s Big Russ and Me: Father and Son. Lessons of Life 20th; Tony Hendra’s Father Joe: The Man who Saved my Soul 23rd; Ron Chernow’s Alexander Hamilton 27th; Cokie Roberts’s Founding Mothers: The Women Who Raised our Nation 31st; Kitty Kelley’s The Family: The Real Story of the Bush Dynasty 42nd; and Chronicles, Volume 1 by Bob Dylan was 43rd. In 2005, auto/biographical texts were well down the list with only The Year of Magical Thinking by Joan Didion at 45 and The Glass Castle: A Memoir by Jeanette Walls at 49. In 2006, there was a resurgence of life writing with Nora Ephron’s I Feel Bad About My Neck: and Other Thoughts on Being a Woman at 9; Grisham’s The Innocent Man at 12; Bill Buford’s food memoir Heat: an Amateur’s Adventures as Kitchen Slave, Line Cook, Pasta-Maker, and Apprentice to a Dante-Quoting Butcher in Tuscany at 23; more food writing with Julia Child’s My Life in France at 29; Immaculée Ilibagiza’s Left to Tell: Discovering God amidst the Rwandan Holocaust at 30; CNN anchor Anderson Cooper’s Dispatches from the Edge: A Memoir of War, Disasters and Survival at 43; and Isabella Hatkoff’s Owen & Mzee: The True Story of a Remarkable Friendship (between a baby hippo and a giant tortoise) at 44. In 2007, Ishmael Beah’s discredited A Long Way Gone: Memoirs of a Boy Soldier came in at 8; Walter Isaacson’s Einstein: His Life and Universe 13; Ayaan Hirst Ali’s autobiography of her life in Muslim society, Infidel, 18; The Reagan Diaries 25; Jesus of Nazareth by Pope Benedict XVI 29; Mother Teresa: Come be my Light 36; Clapton: The Autobiography 40; Tina Brown’s The Diana Chronicles 45; Tony Dungy’s Quiet Strength: The Principles, Practices & Priorities of a Winning Life 47; and Daniel Tammet’s Born on a Blue Day: Inside the Extraordinary Mind of an Autistic Savant at 49. Acknowledgements A sincere thank you to Michael Webster at RMIT for assistance with access to Nielsen BookScan statistics, and to the reviewers of this article for their insightful comments. Any errors are, of course, our own. References Australian Broadcasting Commission (ABC). “About Us.” Australian Story 2008. 1 June 2008. ‹http://www.abc.net.au/austory/aboutus.htm>. 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The autobiographical documentary film “18q – a valuable life”, is one attempt to redefine the place of disability in contemporary western society. My work presents some key moments in my life and that of my family since the birth of my youngest child, Allycia in 1995. Allycia was born with a rare genetic condition affecting the 18th chromosome resulting in her experiencing the world somewhat differently to the rest of the family. The condition, which manifests in a myriad of ways with varying levels of severity, affects individuals’ physical and intellectual development (Chromosome 18, n. pag.). While the film outlines the condition and Allycia’s medical history, the work is primarily concerned with the experiences of the family and offering an alternate story of disability as “other”. Drawing on Rosemarie Garland Thomson’s notion of shape structuring story ("Shape") and Margrit Shildrick’s discussion of becoming vulnerable as theoretical foundations, I reflect on how the making of the film has challenged my previously held views about disability and ultimately about myself. The Film & Disability “18q – a valuable life” introduces a new, previously “invisible” shape in the form of bodies coded as Chromosome 18 to the screen. The initial impulse to make the film was driven by a need to provide a media presence for a rare genetic condition known collectively as Chromosome 18 (Chromosome 18, n. pag.) where previously there was none. This impulse was fuelled by a desire to tell a different story, our story; a story about what life can be like when a child with intellectual and physical impairment is born into one’s family. This different story is, in Garland Thompson’s terms, one that “insists that shape structures story” (114) and endeavours to contribute to recasting disability “as an occasion for exuberant flourishing” (Garland Thompson 114). The categorisation and depiction of people with disability in western society’s media have been scrutinised by many writers including Mitchell and Snyder ("Representations"; "Visual"), Oliver and Norden who point out that negatively charged stereotypical representations of the disabled continue to proliferate in the mediasphere. Englandkennedy for example examines the portrayal of the new disability classification Attention Deficit Disorder and is highly critical of its representation in programs such as The Simpsons (1989-2008) and films such as Pecker (1998). She asserts, “few media representations of ADD exist and most are inaccurate; they reflect and reinforce social concerns and negative stereotypes” (117) to the detriment of the condition being better understood by their audiences. However, Englandkennedy also identifies the positive possibilities for informed media representations that offer new models and stories about disability, citing works such as Children of a Lesser God (1986) and The Bone Collector (1999) as examples of shifts in fictional story telling modes. There are also shifts in recent documentary films such as My Flesh and Blood (2004), Tarnation (2003) and Murderball (2005) which provide insightful, powerful and engaging stories about disability. I suggest however that they still rely upon the stereotypical modes identified by numerous disability studies scholars. For example, Darke’s (n. pag.) heroic mother figure and disabled outsider and victim are depicted in the extreme in My Flesh and Blood and Tarnation respectively, whilst Murderball, as powerful as it is, still constructs disability as “something” to be overcome and is celebrated via the character construction of the “super-crip” (Englandkennedy 99). These stories are vital and insightful developments in challenging and re-shaping the many stigmas associated with disability, but they remain, for the most part, inaccessible to me in terms of my place in the world as a person parenting a little girl with physical and intellectual impairment. Able to Live The opening of the film features footage of my two older children Adam and Kristina, as “normal”, active children. These idyllic images are interrupted by an image of me by Allycia’s bedside where, as an infant, she is attached to life saving machines. She is at once “othered” to her active, healthy siblings. Her survival was reliant, and remains so, albeit to a much lesser extent, upon the intrusion of machines, administering of medication and the intervention of strangers. The prospect of her dying rendered me powerless, vulnerable; I lacked the means to sustain her life. To hand over my child to strangers, knowing they would carve her tiny chest open, suspend the beating of her already frail heart and attempt to repair it, was to surrender to the unknown without guarantees; the only surety being she would cease to be if I did not. Allycia survived surgery. This triumph however, was recast in the shadow of abnormality as outlined in the film when genetic screening of her DNA revealed she had been born with a rare genetic abnormality coded as 18q23 deletion. This information meant she was missing a part of her eighteenth chromosome and the literature available at that time (in 1997) gave little cause for hope – she was physically and intellectually retarded. This news, delivered to me by a genetic counsellor, was coupled with advice to ensure my daughter enjoyed “quality of life”. The words, “rare genetic abnormality” and “retarded” succeeded in effectively “othering” Allycia to me, to my other two children and the general population. My knowledge and experience with people with genetic abnormalities was minimal and synonymous with loss, sadness, suffering and sacrifice and had little to do with quality of life. She was frail and I was confronted with the loss of a “normal” child that would surely result in the “loss” of my own life when framed within this bleak, imagined life that lay before me; her disability, her otherness, her vulnerability signalled my own. As unpalatable as it is for me to use the word monstrous with reference to my daughter, Shildrick’s work, aligning the disabled experience with the monstrous and the possibility of becoming via a refiguring of vulnerability, resonates somewhat with my encounter with my vulnerable self. Schildrick proposes that “any being who traverses the liminal spaces that evade classification takes on the potential to confound normative identity” (6). As Allycia’s mother, I find Shildrick’s assertion that the monstrous “remains excessive of any category, it always claims us, always touches us and implicates us in its own becoming” (6) is particularly pertinent. This is not to say that Schildrick’s notion of the monstrous is an unproblematic one. Indeed Kaul reminds us that: to identify disabled bodies too closely with the monstrous seems to risk leaving us out of universal, as well as particular, experience, entirely in the figurative. (11) Schildrick’s notion of the universality of vulnerability however is implicit in her reference to that which confounds and disturbs us, and it is an important one. Clearly Allycia’s arrival has claimed me, touched me; I am intimately implicated in her becoming. I could not have anticipated however the degree to which she has been intertwined with my own becoming. Her arrival, in retrospect crystallised for me Shildrick’s proposition that “we are already without boundaries, already vulnerable” (6). The film does not shy away from the difficulties confronting Allycia and my family and other members of the chromosome 18 community. I have attempted however to portray our environment and culture as contributing factors and challenge the myth of medicine as a perfect science or answer to the myriad of challenges of navigating life with a disability in contemporary society. This was a difficult undertaking as I did not want the work to degenerate into one that was reliant on blame or continued in the construction of people with disability as victims. I have been mindful of balancing the sometimes painful reality of our lives with those moments that have brought us a sense of accomplishment or delight. Part of the delight of our lives is exemplified when my sister Julie articulates the difference in Allycia’s experiences as compared to her own nine year old daughter, Lydia. Julie succeeds in valorising Allycia’s freedom to be herself by juxtaposing her own daughter’s preoccupation with “what others think” and her level of self consciousness in social contexts. Julie also highlights Lydia’s awareness of Allycia’s difference, via narration over footage of Lydia assisting Allycia, and asserts that this role of becoming a helper is a positive attribute for Lydia’s development. Able to Laugh Including humour in the film was a vital ingredient in the reframing of disability in our lives and is employed as a device to enhance the accessibility of the text to an audience. The film is quite dialogue driven in furnishing background knowledge and runs the risk at times, when characters reveal some of their more painful experiences, of degenerating into a tale of despair. Humour acts as device to lift the overall mood of the film. The humour is in part structured by my failures and incompetence – particularly in reference to my command (or rather lack) of public transport both in Australia and overseas. While the events depicted did occur – my missing a ferry and losing our way in the United States – their inclusion in the film is used as a device to show me, as the able bodied person; the adult ‘able’ mother, with flaws and all. This deliberate act endeavours to re-shape the “heroic mother” stereotype. A wistful form of humour also emerges when my vulnerability becomes apparent in a sequence where I break down and cry, feeling the burden in that moment of the first eleven years of Allycia’s life. Here Allycia as carer emerges as she uses our favourite toy to interrupt my crying, succeeding in turning my tears into a gentle smile. Her maturity and ability to connect with my sadness and the need to make me feel better are apparent and serve to challenge the status of intellectual impairment as burden. This sequence also served to help me laugh at myself in quite a different way after spending many hours confronted with the many faces that are mine during the editing process. I experienced a great deal of discomfort in front of the camera due to feelings of self-consciousness and being on display. That discomfort paled into insignificance when I then had to watch myself on the monitor and triggered a parallel journey alongside the making of the film as I continued to view myself over time. Those images showing my distress, my face contorted with tears as I struggled to maintain control made me cry for quite a while afterwards. I felt a strange empathy for myself – as if viewing someone else’s pain although it was mine, simultaneously the same and other. Chris Sarra’s “notion of a common core otherness as constituting the essence of human being” is one that resonates closely with these aspects. Sarra reinterprets Bhaskar (5) arguing that “we should regard the same as a tiny ripple on the sea of otherness”, enabling us “to enshrine the right to be other” capturing “something of the wonder and strangeness of being” (5). Over time I have become used to seeing these images and have laughed at myself. I believe becoming accustomed to seeing myself, aging as I have during these years, has been a useful process. I have become "more" comfortable with seeing that face, my face in another time. In essence I have been required to sit with my own vulnerabilities and have gained a deeper acceptance of my own fragility and in a sense, my own mortality. This idea of becoming “used to”, and more accepting of the images I was previously uncomfortable with has given me a renewed hope for our community in particular, the disability community in general. My experience I believe indicates the potential for us, as we become more visible, to be accepted in our difference. Critical to this is the need for us to be seen in the fullness of human experience, including our capacity to experience laughter and love and the delight these experiences bring to our lives and those around us. These experiences are captured exquisitely when Allycia sees her newfound chromosome 18 friends, Martin and Kathryn kissing one another. She reacts in much the same way I expect other little girls might in a similar situation. She is simultaneously “grossed out” and intrigued, much to our delight. It is a lovely spontaneous moment that says much in the space of a minute about Martin and Kathryn, and about Allycia’s and my relationship. For me there is a beauty, there is honesty and there is transparency. Able to Love My desire for this film is similar to Garland Thomson’s desire for her writing to “provide access to some elements of my community to both disabled and non disabled audiences alike” (122). I felt part of the key to making the film “work” was ensuring it remained accessible to as wide an audience as possible and began with a naive optimism that the film could defy stereotypical story lines. I discovered this accessibility I desired was reliant upon the traditions of storytelling; language, the construction of character and the telling of a journey demanded an engagement in ways we collectively identify and understand (Campbell). I found our lives at times, became stereotypical. I had moments of feeling like a victim; Allycia as a dancer could well be perceived as a “supercrip” and the very act of making a film about my daughter could be viewed as a heroic one. The process resulted in my surrendering to working within a framework that relies upon, all too often, character construction that is stereotypical. I felt despondent many times upon realising the emergence of these in the work, but held onto the belief that something new could be shown by exposing “two narrative currents which are seldom included in the usual stories we tell about disability: sexuality and community” (Garland Thompson 114). The take on sexuality is a gentle one, concerned with emerging ideologies surrounding sexuality in our community. This is a new phenomenon in terms of the “place” of sexuality and intimacy within our community. One of our parents featured in the film makes this clear when he explains that the community is watching a new romance blossom “with interest” (18q) and that this is a new experience for us as a whole. In focussing on sexuality, my intention is to provoke discussion about perceptions surrounding people categorised as intellectually impaired and their capacity to love and build intimate relationships and the possibilities this presents for the chromosome 18 community. The theme of community features significantly in the film as audiences become privy to conferences attended by, in one instance, 300 people. My intention here is to “make our mark”. There has been no significant filmic presence of Chromosome 18. The condition is rare, but when those affected by it are gathered together, a significantly “bigger picture” of is presented where previously there was none. The community is a significant support network for families and is concerned with becoming empowered by knowledge, care and advocacy. The transcendence of global and cultural boundaries becomes apparent in the film as these differences become diminished in light of our greater need to connect with each others’ experiences in life as, or with, people born with genetic difference. The film highlights the supportive, educated and joyful “shape” of our community. In presenting our community I hope too that western society’s preoccupation with normativity and ableism (Goggin) is effectively challenged. In presenting a version of life that “destabilises the system and points up its inadequacy as a model of existential relations”, I am also demonstrating what Shildrick calls “unreflected excess, that which is other than the same” (105). The most significant shift for me has been to refigure my ideas about Allycia as an adult. When I was given her medical prognosis I believed she would be my responsibility for the rest of my life. I did not hold a lot of hope for the future and could not have possibly entertained the idea that she may live independently or heaven forbid, she may enter into an intimate adult relationship; such was my experience with the physically and intellectually impaired. Thankfully I have progressed. This progression has been, in part, due to attending a Chromosome 18 conference in Boston in 2007 where we met Kathryn and Martin, a young couple in the early stages of building a relationship. This is a new phenomenon in our community. Kathryn and Martin were born with chromosome 18 deletions. Meeting them and their families has signalled new possibilities for our children and their opportunities and their right to explore intimate adult relationships. Their relationship has given me confidence to proceed with an open mind regarding Allycia’s adulthood and sexuality. Conclusion The very act of making the film was one that would inevitably render me vulnerable. Placing myself before the camera has given me a new perspective on vulnerability as a state that simultaneously disempowers and empowers me. I could argue this process has given me a better understanding of Allycia’s place in the world, but to do this is to deny our differences. Instead I believe the experience has given me a renewed perspective in embracing our differences and has also enabled me to see how much we are alike. My understanding of myself as both “able” and “othered”, and the ensuing recognition of, and encounter with, my vulnerable self have in some measure, come as a result of being continually confronted with images of myself in the editing process. But more than this, reflecting upon the years since Allycia’s birth I have come to a more intimate understanding and acceptance of myself as a consequence of knowing Allycia. Whereas my experience has been a matter of will, Allycia’s contribution is in the fact that she simply is. These experiences have given me renewed hope of acceptance of people of difference - that over time we as a society may become used to seeing the different face and the different behaviours that often accompany the experience of people living with genetic difference. References Bhaskar, R. Dialectic: The Pulse of Freedom. London: Verso, 1993. Campbell, J. The Hero's Journey: Joseph Campbell on His Life and Work. California: New World Library, 2003 Caouette, J. Tarnation. Dir. J. Caouette. DVD. 2004. Chromosome 18. "Chromosome 18 Research & Registry Society." 2008. 3 March 2008 ‹http://www.chromosome18.org/›. Darke, P. "The Cinematic Construction of Physical Disability as Identified through the Application of the Social Model of Disability to Six Indicative Films Made since 1970: A Day In The Death of Joe Egg (1970), The Raging Moon (1970), The Elephant Man (1980), Whose Life Is It Anyway? (1981), Duet for One (1987) and My Left Foot (1989)." 1999. 10 Feb. 2006 ‹http://www.darke.info/›. Englandkennedy, E. “Media Representations of Attention Deficit Disorder: Portrayals of Cultural Skepticism in Popular Media.” Journal of Popular Culture 41.1 (2008): 91-118. Garland Thomson, R. “Shape Structures Story: Fresh and Feisty Stories about Disability.” Narrative 15.1 (2007): 113-123. –––. Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature. New York: Columbia Univ. Press, 1997. Goggin, G. Division One: Bodies of Knowledge. 2002. 10 Feb. 2006 ‹http://adt.library.qut.edu.au/adt-qut/uploads/approved/adt-QUT20041123.160628/public/02whole.pdf›. Groening, M. The Simpsons. 20th Century Fox Television. 1989-2008. Iacone, J. The Bone Collector. Dir. P. Noyce. DVD. Columbia Pictures Corporation, 1999. Karsh, J. My Flesh and Blood. DVD. San Francisco: Chaiken Films, 2004. Kaul, K. Figuring Disability in Disability Studies: Theory, Policy and Practice. Toronto: York University, 2003. Medoff, M. Children of a Lesser God. Dir. R. Haines. Paramount Pictures, 1986. Mitchell, D. T., and S. L. Snyder. "Representation and Its Discontents: The Uneasy Home of Disability in Literature and Film." In Handbook of Disability Studies, eds. G. L. Albrecht, K. D. Seelman, and M. Bury. Thousand Oaks, CA: Sage, 2001. 195-218. –––. “The Visual Foucauldian: Institutional Coercion and Surveillance in Frederick Wiseman's Multi-Handicapped Documentary Series.” Journal of Medical Humanities 24.3 (2003): 291. Norden, M.F. The Cinema of Isolation. New Brunswick: Rutgers University Press, 1994 Oliver, M. The Politics of Disablement. The Disability Archive UK. University of Leeds, 1990. 3 April 2005 ‹http://www.leeds.ac.uk/disability-studies/archiveuk/Oliver/p%20of%20d%20oliver4.pdf›. Rubin, H. A., and D. A. Shapiro. Murderball. DVD. Paramount Pictures, 2005. Sarra, C. Chris Sarra & The Other. Unpublished manuscript, 2005. Shildrick, M. Embodying the Monster: Encounters with the Vulnerable Self. London: Sage, 2002.Wain, Veronica. 18q – A Valuable Life. Prod. V. Wain. 2008. Waters, J. Pecker. Videocassette. Polar Entertainment, 1998.

Includes bibliographical references (leaves 280-305). Argues that despite the liberal use of social control theory in the literature on the social history of venereal diseases, rationale discourses do not necessarily lead to government intervention. Comparative analysis reveals that culturally similar locations can experience similar impulses and constraints to the development of social policy under differing constitutional arrangements.