Littérature scientifique sur le sujet « Organ donor opposition »

Background. Visual impairments have physical, emotional, social, and economical consequences and are a crucial element influencing one's quality of life. A total of 1.285 million people are estimated to be visually impaired worldwide of which 39 million are categorised as blind. These figures are startling, given that 80 percent of known vision impairments are either treatable or preventable. Corneal transplants appear to be our best hope for resolving this problem; however, a global shortage of available donors continues to dampen efforts addressing this issue. Methods. This two-year cross-sectional study employed a convenience sampling technique and a standardised questionnaire to survey 150 paramedical and allied health science students at a tertiary care teaching hospital and assessed the awareness, knowledge, willingness and barriers regarding eye donation. Results. The study revealed a 93.3% awareness rate of the donation procedure, of which 46% attributed their awareness to media sources. However, other aspects assessed had much lower awareness rates; when the eyes are donated (53.3%), optimal time period for retrieval of tissue/organ (54%), ideal part transplanted (54%), age limit not restricting donation (67%), donation by donors using spectacles (48%), confidentiality of the donor and recipient (54%), hospital having the facility of an eye bank (63%). 49 percent of the respondents were willing to pledge themselves as eye donors, and a majority of the unwilling respondents reported that familial opposition was the reason for their hesitation. Conclusion. Knowledge levels appear to be below expectations, and more effort is required to ensure that knowledge is imparted to our healthcare practitioners, who will then transfer this knowledge to the population, resulting in an increase in donation rates.

This paper explores the issue of donation of organs from deceased donors for transplantation into a specified recipient. It argues that proper account should be taken of the principles underlying the Human Tissue Act 2004, which grant the donor a form of proprietary control. Three hypothetical scenarios are then used to draw out the implications of these principles for existing regulatory policy and the common law response to excised human organs. The paper concludes that the law should be understood as recognising ownership in organs removed from living and deceased persons and as offering opposition to the prohibition of directed donation that can only be coherently removed by reform of the 2004 Act.

In the half-century history of clinical practice of diagnosing brain death, informed consent has seldom been considered until very recently. Like many other medical diagnoses and ordinary death pronouncements, it has been taken for granted for decades that brain death is diagnosed and death is declared without consideration of the patient’s advance directives or family’s wishes. This essay examines the pros and cons of using informed consent before the diagnosis of brain death from an ethical point of view. As shared decision-making in clinical practice became increasingly indispensable, respect for the patients’ autonomous wishes regarding how to end their lives has a significant role in deciding how death is diagnosed. Brain death, as a fully technologically controlled death, may require a different ethical framework from the old one for traditional cardiac death. With emerging and proliferating options in end-of-life care for those who suffer from catastrophic brain injury, the traditional reasoning that ‘death gives no choice, hence no consent’ requires another examination. Patients facing imminent brain death now have options other than undergoing the diagnostic workup for brain death, such as donation after circulatory death and withdrawal of life-sustaining treatment with maximum comfort measures for death with dignity. Nevertheless, just as in the debate over opt-in versus opt-out organ donation policies, informed consent before the diagnosis of brain death faces fierce opposition from consequentialists urging the expansion of the donor pool. This essay examines these objections and provides constructive replies along with a proposal to accommodate this morally required consent.

In presenza di grave insufficienza d’organo, il trapianto è la sola e unica soluzione per salvare la vita del paziente. Si stima che, attualmente, in Italia oltre 9.000 persone siano in lista d’attesa per un trapianto di organo: anche se vi è stato un incremento del numero di donazioni negli ultimi decenni, il gap tra donatori e pazienti in attesa è in continua crescita. Secondo la maggior parte delle società di trapiantologia, i donatori a cuore non battente (NHBD) possono essere una fonte di reperimento degli organi. Quanto la donazione da NHBD può ampliare il pool dei donatori? Quali sono i rischi legati al prelievo di organi da NHBD non solo per il donatore ma anche per il ricevente? Nel tentativo di chiarire almeno alcuni di tali interrogativi abbiamo condotto un’analisi della letteratura scientifica internazionale. Per valutare, poi, la possibilità di ampliamento del pool di donatori con l’introduzione di un protocollo da NHBD nella popolazione pediatrica del Policlinico “A. Gemelli” in Roma, abbiamo condotto uno studio retrospettivo sui pazienti pediatrici deceduti nel corso del triennio 2004-2007. I risultati sembrano indicare la possibilità di raddoppiare il potenziale pool di donatori; questi dati richiedono poi una valutazione attenta, innanzitutto alla luce delle percentuali di opposizione alla donazione che nell’età pediatrica sono ancora più significative che nell’adulto. I risultati ottenuti sono solo il punto di partenza per un’analisi più approfondita sui problemi relativi ai trapianti e alla donazione di organi. ---------- In case of end stage organ failure, organ transplantation is the one and only solution to save patient’s life. Currently, in Italy, more than 9.000 people are awaiting for an organ transplantation; even though the number of organ donation has been increasing during last decades, gap between organ demand and transplantation is still wide. According to ideas of most society of transplantation, non heart beating donors (NHBD) could be a solution to the shortage of organs. How much NHBD could widen donors pool? Which ones and how many risks involve NHBD, even for donors or transplantation recipients? Trying to answer these questions, we led an analysis on NHBD data in international literature. To evaluate the potential of NHBD to expand the pool of donors in pediatric population of “Policlinico Gemelli” in Rome, we studied all deceased pediatric patients in the years 2004-2007. Results showed that the potential pool of donors could be twice as much, but these data should esteem about parental opposition, in particular in pediatric age. These data represent only a starting point for a deeper analysis of transplantation and donation related problems.

Abstract The market for kidneys offers a case study of Baptists and Bootleggers. In almost every country, sales are currently illegal and donated organs are allocated by a central planner. Thousands of people die every year, because of the shortage caused by the absence of markets. This paper starts by examining the free-market alternative, and shows that a market would solve the shortage (and thus unnecessary deaths). It then uses gains-from-trade analysis to explain why current vested interests oppose a move to a market, despite the immense potential for saved lives. In a shift to a market, gains from trade would be distributed away from lucky patients (who receive a zero-price kidney) and various industries that benefit from the shortage (dialysis, medical equipment, etc.); these “Bootleggers” form an alliance with “Baptists” (altruistic donors, large segments of the bioethics community, and organ allocation central planners).

This study analyzed survey results regarding awareness of living minors’ organ donation. The questionnaires focused on changes in how respondents felt about donations by living minors after eliciting the uncertainty of long-term outcomes for living donors and recipients. The respondents were categorized as minors, adults affiliated with non-medical jobs (Non-Meds), and adults affiliated with medical jobs (Meds). The rates of awareness of living organ donation were significantly different; minors at 86.2%, non-Meds at 82.0%, and Meds at 98.7% (p < 0.001). Only 41.4% of Minors and 32.0% of Non-Meds were aware of organ donation by minors, while 70.3% of Meds were (p < 0.001). The response rate of opposition to organ donation by minors was highest for Meds and remained the same before and after (54.4%–57.7%, p = 0.311). However, the opposition rate in Non-Meds significantly increased (32.4%–46.7%) after learning about the uncertainty of long-term outcomes (p = 0.009). The study found that Non-Meds lacked adequate knowledge regarding organ donation by minors and their potential lethal outcomes. Their attitudes toward organ donation by minors could be changed by giving structured information. It is necessary to provide exact information and raise social awareness regarding organ donation by living minors.

RESUMOA ruptura entre o pensamento da Natureza como physis e o pensamento humano conduz a sofrimentos e equívocos para o homem no campo das subjetividades. Uma relação afirmativa com o devir, em acordo com a proposta de Nietzsche de sabedoria dionisíaca, reconduziria o homem ao caminho da vida trágica – aquela que produz vigor ao afirmar a dor e a diferença – anulando a falsa oposição homem/natureza. Inspirados em Nietzsche, Deleuze e Guattari realizam o combate contra os fascismos do socius, do Estado, do capitalismo – ou seja, dos vários territórios de saberes e poderes estabelecidos – que capturam os corpos e anulam suas potências. Um instrumento para essas lutas é a produção de rasuras contrafascistas sobre as codificações do poder. A questão de como produzir para si corpos sem órgãos, como forma de escapar à organicidade do socius, se faz possível pelo potencial que a sensação tem de rasurar e rediagramar as cartografias das subjetividades.Palavras-chave: rasura, cartografia, socius RESUMENLa ruptura entre el pensamiento de la naturaleza como physis y el pensamiento humano conduce a sufrimientos y equívocos para el hombre en el campo de las subjetividades. Una relación afirmativa con el devenir, en acuerdo con la propuesta de Nietzsche de sabiduría dionisíaca, reconduciría al hombre al camino de la vida trágica - aquella que produce vigor al afirmar el dolor y la diferencia - anulando la falsa oposición hombre/naturaleza. Inspirado en Nietzsche, Deleuze y Guattari proponen combates contra el fascismo de socius, del Estado, del capitalismo - es decir, de los varios territorios de saberes y poderes establecidos - que capturan los cuerpos y anulan sus potencias. Un instrumento para estas luchas es la producción de borraduras contra-fascistas sobre las codificaciones de poder. La cuestión de cómo producir por sí mismos cuerpos sin órganos como una forma de escapar a la organicidad del socius, se hace posible gracias al potencial que la sensación de borrar y redimensionar las cartografías de las subjetividadesPalabras clave:borradura, cartografía, socius ABSTRACTThe rupture between the thought of nature as physis and human thought leads to suffering and confusion for man in the fields of subjectivity. An affirmative relationship with becoming, in accordance with the proposal of Nietzsche's concept of dionysian wisdom, might lead man once again to the path of tragic life - one that produces strength by asserting pain and difference – thus surpassing the false opposition man/nature. Inspired by Nietzsche, Deleuze and Guattari propose fighting against the fascism of the socius, the State, of capitalism and all the dominant discourses of established knowledge and established power that capture body and its will. An instrument for such struggle is the production of counterfascist erasures on the encodings of power. The question of how to produce bodies without organs as a way to escape the organic structure of the socius is made possible by the power of sensation to erase and rediagram the cartographies of subjectivity.erasure, cartography, sociusKeywords: erasure, cartography, socius

RESUMOA fragmentação do mundo e do saber sobre o mundo numa série de esferas autônomas constitui a herança – ao mesmo tempo libertadora e alienante – da modernidade. Os seus efeitos são experimentados por nós dos mais diversos modos, no domínio das ciências e das artes, da reflexão filosófica e da práxis histórica. Numerosas tentativas procuraram, e continuam a procurar, responder a essa dispersão, oferecendo um horizonte de sentido através de sistemas conceptuais, modelos de comunicação ou estruturas de administração. Porém, inclusive quando possam considerar certa abertura, essas tentativas sempre implicam um princípio de totalização da realidade pela representação, ou uma referência da linguagem à forma do verdadeiro, ou uma redução da vida à lógica da efetividade. A ficção é ao mesmo tempo menos ambiciosa e mais precária, mas eventualmente pode chegar a nos oferecer uma forma incomensurável de relacionar-nos com a fragmentação do mundo moderno, sem fechá-lo peremptoriamente na conta de nenhum dispositivo de saber-poder nem de forma alguma de consenso. O presente trabalho pretende apresentar alguns conceptos de ficção que, de Nietzsche a Foucault e de Vaihinger a Saer, dão conta da potência do falso.Palavras-chave: rasura, cartografia, socius; RESUMENLa ruptura entre el pensamiento de la naturaleza como physis y el pensamiento humano conduce a sufrimientos y equívocos para el hombre en el campo de las subjetividades. Una relación afirmativa con el devenir, en acuerdo con la propuesta de Nietzsche de sabiduría dionisíaca, reconduciría al hombre al camino de la vida trágica - aquella que produce vigor al afirmar el dolor y la diferencia - anulando la falsa oposición hombre/naturaleza. Inspirado en Nietzsche, Deleuze y Guattari proponen combates contra el fascismo de socius, del Estado, del capitalismo - es decir, de los varios territorios de saberes y poderes establecidos - que capturan los cuerpos y anulan sus potencias. Un instrumento para estas luchas es la producción de borraduras contra-fascistas sobre las codificaciones de poder. La cuestión de cómo producir por sí mismos cuerpos sin órganos como una forma de escapar a la organicidad del socius, se hace posible gracias al potencial que la sensación de borrar y redimensionar las cartografías de las subjetividadesPalabras clave:borradura, cartografía, socius ABSTRACTThe rupture between the thought of nature as physis and human thought leads to suffering and confusion for man in the fields of subjectivity. An affirmative relationship with becoming, in accordance with the proposal of Nietzsche's concept of dionysian wisdom, might lead man once again to the path of tragic life - one that produces strength by asserting pain and difference – thus surpassing the false opposition man/nature. Inspired by Nietzsche, Deleuze and Guattari propose fighting against the fascism of the socius, the State, of capitalism and all the dominant discourses of established knowledge and established power that capture body and its will. An instrument for such struggle is the production of counterfascist erasures on the encodings of power. The question of how to produce bodies without organs as a way to escape the organic structure of the socius is made possible by the power of sensation to erase and rediagram the cartographies of subjectivity.Keywords: erasure, cartography, socius

Don't be afraid - it's only a flesh wound. The organs are intact although there is a threat of amputation, which we all know can easily be tolerated if the remaining bones are plentiful and sound and they are held in place by a tough skin. Where there's a will there's a will not and the National Museum of Australia (NMA) will not lie down in the face of Australian Government attempts to cut off its funding blood and give its guts a good going over. Not yet. Not for eternity. The NMA opened in March 2001 in Canberra, Australia's national capital. The buildings were designed by ARM (Ashton Raggatt McDougall), an architectural firm based in Melbourne, with landscape design by Room 4.1.3. Like other galleries and museums constructed in the last 20 years such as the Gugenheim in Bilbao and Libeskind's Jewish Museum, the NMA buildings and landscape are as much an exhibit as that which they contain. In fact the Jewish Museum first opened without containing anything other than space; the proper concern of architecture, some say. The strong colours and shapes of the NMA stand out in the grey, Modernist-inspired, concrete environment that is Canberra - some say this place is a perversion of Walter and Marion Burley Griffin's original plans for a garden wonderland; others marvel that the spirit of the original plan has even partially survived. I say, good bones and plenty of them. Bernard Tschumi says that society expects architecture to reflect its ideals and domesticate its deeper fears(72). This is certainly the brand of architecture that the Australian government thought it was ordering when it allocated funds for the building of a national museum. Not that Aussies have fears which need domesticating. No fear. A few secrets, some dirty laundry, a scar or two. But it can be argued that ARM have excoriated fear; they have tattooed it across the national forehead and said “read me if you can and if you dare”. ARM have provided a building which appears to be mostly skin. Hide the national scars under a national symbol that is all surface. A skin, but one which encases an undifferentiated body; of work, of nationhood, of stuff. The skin of the NMA is a site for writing; giant Braille dots the surface of the building, a confusion between writing and reading. For most, the dots are impossible to read – too large and too high to touch with human fingers and indecipherable by most who visit even if the scale and location would allow them to be touched. How did they have the nerve ending to write a writing that only hands can read; only hands so big that they have lost the delicate sense of touch, thereby rendering the Braille unreadable. Make a ceiling so high that it takes twenty million to change a light-bulb. Make a statement so clever that no-one gets it. Along with the Braille, the word eternity winds under and over, across and through the guts of the NMA. Howard Raggatt of ARM writes that having designed the shapes of the building forms, they “laid them out like dressmaking patterns, to press upon them this single stencilled script” – using software they superimposed the forms over a graphic of Arthur Stace’s Eternity and wrapped the Museum in it (45). Arthur Stace claimed that he was divinely inspired to write the word in ephemeral chalk an estimated 500,000 times on the footpaths of Sydney over a thirty-year period. He summoned the citizens to acknowledge the power of God. Raggatt says that its use on the outside of the NMA “encourages our hope to read this land”. And the text thickens. Is the writing of eternity on the national skin of the NMA a tattoo or stigmata? Derrida talks of these – tattoo and stigmata - in Writing and Difference in discussing the relationship between critical discourse and clinical discourse and focuses on Antonin Artuad’s “theatre of cruelty” (Artaud also inspired Deleuze and Guattari’s metaphor of the body without organs). Derrida begins with an exploration of the tendency to associate the work of art with the mental state of the artist. However from his specific critique of structuralism, he moves into much broader territory. Artuad’s attempts to make a verbal, not a grammatical theatre, “a graphism which …[is] an incarnation of the letter and a bloody tattoo” are judged by Derrida (and Artaud himself) to have been wanting precisely because such a tattoo “paralyzes gesture and silences the voice … represses the shout and the chance for a still unorganised voice” (235). Where the text (or in Artaud’s terms, breath) is “spirited/stolen…in order to place it in an order” the text is tattoo and it cannot hope to overturn the effects of power because it is on the surface rather than in opposition to it. By contrast, stigmata is a wound that cuts beneath the surface, “substituted for the text” that “undertakes neither a renewal, nor a critique” but “intends the effective, active, and non-theoretical destruction of Western civilization and its religions” (227). Text as stigmata is spirited/inspired rather than spirited/stolen. Granted, this section of Writing and Difference speaks of Artaud’s work in the context of theatre, however the theatrical metaphor is appropriate for the NMA – stand in the middle of the Garden of Australian Dreams surrounded by viewing platforms, and you understand that you are in the middle of a performance. But what does eternity do in this arena, on and under this skin? I have already described the writing of eternity around the NMA’s structure. Within the museum (in its stomach, it seems, when one seeks it out) is the small exhibition space built around the theme of eternity. Of course, it is a permanent exhibition – how could it be anything else. This space speaks to the people aspect of the NMA’s land, nation, people themes through “emotions” of separation, mystery, hope, joy, loneliness, thrill, devotion, fear, chance, and passion. The exhibits here are the stories of individuals. The black dress of Baby Azaria Chamberlain (who is alleged to have been killed by a dingo, a wild Australian native dog) (mystery) and an elaborate costume from the Sydney Gay and Lesbian Mardi Gras (thrill) are examples of the representations of Australian individuals. The eternity theme was chosen after the individual stories were selected and the curator realized that the NMA collection included one of the few remaining examples of Stace’s handiwork – one preserved on the back of the door of an outdoor toilet (if only there were space in this article to explore the significance of this in terms of Derrida’s linking of God and shit!). Marion Stell, the exhibition curator, writes that she believed this provided a link between the emotions as well as representing a fascinating individual story in its own right. Interestingly, the recentre view of the NMA that recommends the de/recon-struction of the Garden ofAustralian Dreams , a teleological recasting of the Circa multimedia theatre(criticized for presenting too episodic a view of Australian history) and the Horizons gallery (allegedly too limited in its presentation of the stories of migrants), commends the Eternity gallery, despite its depictions of gays and lesbians, those who have taken on the courts and won and other transgressors. The private sphere of individual lives seems too unimportant to take on? And if so, is this a strength of eternity at NMA or a weakness? Eternity slips under the radar as only such a slippery word can. And the review makes no mention of the writing on the outside of the building. How could you miss a word so big, so utterly big? Did the review panel confuse BIG with BenIGn? This word eternity, this script eternity. Inside the museum in the eternity gallery it is the street tattoo, the written surface of the traditional museum which reflects, mirror-like, what the visitor wishes to feel. There, it is Aussie icon-become-cliché. Attached firmly to the maker of the original marks, Arthur Stace, footpath font designer and illiterate messenger of God, it carries the trace of the God on whose behalf he wrote. And who in the current world political climate would dare to take on God’s messenger, no matter whose God. In that gallery it is spirited/stolen and, tattoo-like, it represses the uninhibited shout of difference through imposition of an order; the somewhat transgressive stories of individuals such as Lindy Chamberlain (Azaria’s mother, who was first convicted of her murder and then pardoned) and indeed, Arthur Stace, are rendered “safer” by the direct reproduction of Stace’s script. Originally, in Walter Benjamin’s terms, Stace’s eternity assumed auratic qualities that ironically it acquired, rather than lost, through repetition and reproduction on Sydney’s footpaths. However it’s use more recently– remember it was emblazoned on both the Sydney Harbour Bridge for the Millenium celebrations and in the2000 Sydney Olympic opening ceremony for its ability to call up a trace of the sublime – have turned it into an Australian brand name, designed to re/produce thoughts of a grand and glorious Australia, an Australia which neither Lindy Chamberlain nor Arthur Stace might have experienced. (The City of Sydney has gone so far as to copyright the Stace eternity script). But outside, scarred into the skin, too big to read, too black to ignore, eternity operates paradoxically at a more subtle level. Appearing as if pure ornament, black squiggles on a blatantly referential structure, with this use of Stace’s eternity ARM have tackled the issue of timelessness and architecture through invoking time in its entirety. They have invoked the quasi-religious contemplative response that the Stace rendering of the word engenders when it takes us by surprise. Eternity written on the surface of the NMA is stigmata, Stace’s eternity spirited/inspired rather than spirited/stolen. It is a flow of meaning that invokes the evangelistic incantations of Stace at a size which multiplies the possible meanings through its appeal to illiteracy and illegibility, and with a resilience which refuses to be washed away by reviews and revisions of the Museum. Derrida says that “to overthrow the power of the literal work is not to erase the letter, but only to subordinate it to the incidence of illegibility or at least of illiteracy” (225). Eternity. Legend has it that for a while some larrikin followed in Stace's footsteps changing eternity to maternity. Perhaps in the fullness of eternity a Government-appointed review panel can retrospectively declare the stigmata a harmless word better suited to a bland Australia. Like tomato or cricket or captain cook. For the foreseeable past and future, it remains eternity. Works Cited Benjamin, Walter. The Work of Art in the Age of Mechanical Reproduction. Harmondsworth: Penguin, 1993.Deleuze, Gilles and Guattari, Felix. Anti-Oedipus: Capitalism and Schizophrenia. New York: Viking, 1972Derrida, Jacques. Writing and Difference. Trans. Alan Bass. London:Routledge, 2001. Raggatt, Howard. "Rabbits, Dogs and Butterflies." National Museum of Australia: Tangled Destinies. Melbourne: Images, 2002. 44-47. Stell, Marion, ed. Eternity: Stories from the Emotional Heart of Australia. Canberra: National Museum of Australia,2001.Tschumi, Bernard. Architecture and Disjunction. Cambridge: MIT P,1994. Links http://www.a-r-m.com.au/ http://www.daniel-libeskind.com/projects/pro.html?ID=2 http://www.nma.gov.au/ http://www.nma.gov.au/aboutus/council_and_committees/review http://www.room413.com.au/Museum/Museum.html http://www.skewarch.com/architects/gerhy/gerhy-gug.htm Citation reference for this article MLA Style Williams, Jordan. "The Stigmata or the Tattoo" M/C: A Journal of Media and Culture <http://www.media-culture.org.au/0401/06-williams.php>. APA Style Williams, J. (2004, Jan 12). The Stigmata or the Tattoo. M/C: A Journal of Media and Culture, 7, <http://www.media-culture.org.au/0401/06-williams.php>

“Communicating deep feeling in linear solid blocks of print felt arcane, a method beyond me” — Audre Lorde in an interview with Adrienne Rich (Lorde 87) How do you disclose? In writing, in spoken words, in movements, in sounds, in the quiet energetic vibration and its trace in discourse? Is disclosure a narrative account of a self, or a poetic fragment, sent into the world outside the sanction of a story or another recognisable form (see fig. 1)?These are the questions that guide my exploration in this essay. I meditate on them from the vantage point of my own self-narrative, as a community performance practitioner and writer, a poet whose artistry, in many ways, relies on the willingness of others to disclose, to open themselves, and yet who feels ambivalent about narrative disclosures. What I share with you, reader, are my thoughts on what some may call compassion fatigue, on boredom, on burn-out, on the inability to be moved by someone’s hard-won right to story her life, to tell his narrative, to disclose her pain. I find it ironic that for as long as I can remember, my attention has often wandered when someone tells me their story—how this cancer was diagnosed, what the doctors did, how she coped, how she garnered support, how she survived, how that person died, how she lived. The story of how addiction took over her life, how she craved, how she hated, how someone sponsored her, listened to her, how she is making amends, how she copes, how she gets on with her life. The story of being born this way, being prodded this way, being paraded in front of doctors just like this, being operated on, being photographed, being inappropriately touched, being neglected, being forgotten, being unloved, being lonely. Listening to these accounts, my attention does wander, even though this is the heart blood of my chosen life—these are the people whose company I seek, with whom I feel comfortable, with whom I make art, with whom I make a life, to whom I disclose my own stories. But somehow, when we rehearse these stories in each others’s company (for rehearsal, polishing, is how I think of storytelling), I drift. In this performance-as-research essay about disclosure, I want to draw attention to what does draw my attention in community art situations, what halts my drift, and allows me to find connection beyond a story that is unique and so special to this individual, but which I feel I have heard so many times. What grabs me, again and again, lies beyond the words, beyond the “I did this… and that… and they did this… and that,” beyond the story of hardship and injury, recovery and overcoming. My moment of connection tends to happen in the warmth of this hand in mine. It occurs in the material connection that seems to well up between these gray eyes and my own deep gaze. I can feel the skin change its electric tonus as I am listening to the uncoiling account. There’s a timbre in the voice that I follow, even as I lose the words. In the moment of verbal disclosure, physical intimacy changes the time and space of encounter. And I know that the people I sit with are well aware of this—it is not lost on them that my attention isn’t wholly focused on the story they are telling, that I will have forgotten core details when next we work together. But they are also aware, I believe, of those moments of energetic connect that happen through, beyond and underneath the narrative disclosure. There is a physical opening occurring here, right now, when I tell this account to you, when you sit by my side and I confess that I can’t always keep the stories of my current community participants straight, that I forget names all the time, that I do not really wish to put together a show with lots of testimony, that I’d rather have single power words floating in space.Figure 1. Image: Keira Heu-Jwyn Chang. Performer: Neil Marcus.”water burns sun”. Burning. 2009. Orientation towards the Frame: A Poetics of VibrationThis essay speaks about how I witness the uncapturable in performance, how the limits of sharing fuel my performance practice. I also look at the artistic processes of community performance projects, and point out traces of this other attention, this poetics of vibration. One of the frames through which I construct this essay is a focus on the formal in practice: on an attention to the shapes of narratives, and on the ways that formal experimentation can open up spaces beyond and beneath the narratives that can sound so familiar. An attention to the formal in community practice is often confused with an elitist drive towards quality, towards a modern or post-modern play with forms that stands somehow in opposition to how “ordinary people” construct their lives. But there are other ways to think about “the formal,” ways to question the naturalness with which stories are told, poems are written, the ease of an “I”, the separation between self and those others (who hurt, or love, or persecute, or free), the embedment of the experience of thought in institutions of thinking. Elizabeth St. Pierre frames her own struggle with burn-out, falling silent, and the need to just keep going even if the ethical issues involved in continuing her research overwhelm her. She charts out her thinking in reference to Michel Foucault’s comments on how to transgress into a realm of knowing that stretches a self, allows it “get free of oneself.”Getting free of oneself involves an attempt to understand the ‘structures of intelligibility’ (Britzman, 1995, p. 156) that limit thought. Foucault (1984/1985) explaining the urgency of such labor, says, ‘There are times in life when the question of knowing if one can think differently than one thinks, and perceive differently than one sees, is absolutely necessary if one is to go on looking and reflecting at all’ (p. 8). (St. Pierre 204)Can we think outside the structure of story, outside the habits of thought that make us sense and position ourselves in time and space, in power and knowledge? Is there a way to change the frame, into a different format, to “change our mind”? And even if there is not, if the structures of legibility always contain what we can think, there might be riches in that borderland, the bordercountry towards the intelligible, the places where difference presses close in an uncontained, unstoried way. To think differently, to get free of oneself: all these concerns resonate deeply with me, and with the ways that I wish to engage in community art practice. Like St. Pierre, I try to embrace Deleuzian, post-structuralist approaches to story and self:The collective assemblage is always like the murmur from which I take my proper name, the constellation of voices, concordant or not, from which I draw my voice. […] To write is perhaps to bring this assemblage of the unconscious to the light of day, to select the whispering voices, to gather the tribes and secret idioms from which I extract something I call myself (moi). I is an order word. (Deleuze and Guattari 84).“I” wish to perform and to write at the moment when the chorus of the voices that make up my “I” press against my skin, from the inside and the outside, query the notion of ‘skin’ as barrier. But can “I” stay in that vibrational moment? This essay will not be an exercise in quotation marks, but it is an essay of many I’s, and—imagine you see this essay performed—I invite the vibration of the hand gestures that mark small breaches in the air next to my head as I speak.Like St. Pierre, I get thrown off those particular theory horses again and again. But curiosity drives me on, and it is a curiosity nourished not by the absence of (language) connection, by isolation, but by the fullness of those movements of touch and density I described above. That materiality of the tearful eye gaze, the electricity of those fine skin hairs, the voice shivering me: these are not essentialist connections that somehow reveal or disclose a person to me, but these matters make the boundaries of “me” and “person” vibrate. Disclose here becomes the density of living itself, the flowing, non-essential process of shaping lives together. Deleuze and Guattari (1987) have called this bordering “deterritorialization,” always already bound to the reterritorialisation that allows the naming of the experience. Breath-touch on the limits of territories.This is not a shift from verbal to a privileging of non-verbal communication, finding richness and truth in one and less in the other. Non-verbal communication can be just as conventional as spoken language. When someone’s hand reaches out to touch someone who is upset, that gesture can feel ingrained and predictable, and the chain of caretaking that is initiated by the gesture can even hinder the flow of disclosure the crying or upset person might be engaged in. Likewise, I believe the common form of the circle, one I use in nearly every community session I lead, does not really create more community than another format would engender. The repetition of the circle just has something very comforting, it can allow all participants to drop into a certain kind of ease that is different from the everyday, but the rules of that ease are not open—circles territorialise as much as they de-territorialise: here is an inside, here an outside. There is nothing inherently radical in them. But circles might create a radical shift in communication situations when they break open other encrusted forms—an orientation to a leader, a group versus individual arrangement, or the singularity of islands out in space. Circles brings lots of multiples into contact, they “gather the tribes.” What provisional I’s we extract from them in each instance is our ethical challenge.Bodily Fantasies on the Limit: BurningEven deeply felt inner experiences do not escape the generic, and there is lift available in the vibration between the shared fantasy and the personal fantasy. I lead an artists’ collective, The Olimpias, and in 2008/2009, we created Burning, a workshop and performance series that investigated cell imagery, cancer imagery, environmental sensitivity and healing journeys through ritual-based happenings infused with poetry, dramatic scenes, Butoh and Contact Improvisation dances, and live drawing (see: http://www.olimpias.org/).Performance sites included the Subterranean Arthouse, Berkeley, July and October 2009, the Earth Matters on Stage Festival, Eugene, Oregon, May 2009, and Fort Worden, Port Townsend, Washington State, August 2009. Participants for each installation varied, but always included a good percentage of disabled artists.(see fig. 2).Figure 2. Image: Linda Townsend. Performers: Participants in the Burning project. “Burning Action on the Beach”. Burning. 2009. In the last part of these evening-long performance happenings, we use meditation techniques to shift the space and time of participants. We invite people to lie down or otherwise become comfortable (or to observe in quiet). I then begin to lead the part of the evening that most closely dovetails with my personal research exploration. With a slow and reaching voice, I ask people to breathe, to become aware of the movement of breath through their bodies, and of the hollows filled by the luxuriating breath. Once participants are deeply relaxed, I take them on journeys which activate bodily fantasies. I ask them to breathe in colored lights (and leave the specific nature of the colors to them). I invite participants to become cell bodies—heart cells, liver cells, skin cells—and to explore the properties and sensations of these cell environments, through both internal and external movement. “What is the surface, what is deep inside, what does the granular space of the cell feel like? How does the cell membrane move?” When deeply involved in these explorations, I move through the room and give people individual encounters by whispering to them, one by one—letting them respond bodily to the idea that their cell encounters alchemical elements like gold and silver, lead or mercury, or other deeply culturally laden substances like oil or blood. When I am finished with my individual instruction to each participant, all around me, people are moving gently, undulating, contracting and expanding, their eyes closed and their face full of concentration and openness. Some have dropped out of the meditation and are sitting quietly against a wall, observing what is going on around them. Some move more than others, some whisper quietly to themselves.When people are back in spoken-language-time, in sitting-upright-time, we all talk about the experiences, and about the cultural body knowledges, half-forgotten healing practices, that seem to emerge like Jungian archetypes in these movement journeys. During the meditative/slow movement sequence, some long-standing Olimpias performers in the room had imagined themselves as cancer cells, and gently moved with the physical imagery this brought to them. In my meditation invitations during the participatory performance, I do not invite community participants to move as cancer cells—it seems to me to require a more careful approach, a longer developmental period, to enter this darkly signified state, even though Olimpias performers do by no means all move tragically, darkly, or despairing when entering “cancer movement.” In workshops in the weeks leading up to the participatory performances, Olimpias collaborators entered these experiences of cell movement, different organ parts, and cancerous movement many times, and had time to debrief and reflect on their experiences.After the immersion exercise of cell movement, we ask people how it felt like to lie and move in a space that also held cancer cells, and if they noticed different movement patterns, different imaginaries of cell movement, around them, and how that felt. This leads to rich discussions, testimonies of poetic embodiment, snippets of disclosures, glimpses of personal stories, but the echo of embodiment seems to keep the full, long stories at bay, and outside of the immediacy of our sharing. As I look around myself while listening, I see some hands intertwined, some gentle touches, as people rock in the memory of their meditations.nowyour light shines very brightlybut I want youto knowyour darkness alsorichand beyond fear (Lorde 87)My research aim with these movement meditation sequences is not to find essential truths about human bodily imagination, but to explore the limits of somatic experience and cultural expression, to make artful life experiential and to hence create new tools for living in the chemically saturated world we all inhabit.I need to add here that these are my personal aims for Burning—all associated artists have their own journey, their own reasons for being involved, and there is no necessary consensus—just a shared interest in transformation, the cultural images of disease, disability and addiction, the effects of invasion and touch in our lives, and how embodied poetry can help us live. (see fig. 3). For example, a number of collaborators worked together in the participatory Burning performances at the Subterranean Arthouse, a small Butoh performance space in Berkeley, located in an old shop, complete with an open membrane into the urban space—a shop-window and glass door. Lots of things happen with and through us during these evenings, not just my movement meditations.One of my colleagues, Sadie Wilcox, sets up live drawing scenarios, sketching the space between people. Another artist, Harold Burns, engages participants in contact dance, and invites a crossing of boundaries in and through presence. Neil Marcus invites people to move with him, gently, and blindfolded, and to feel his spastic embodiment and his facility with tender touch. Amber diPietra’s poem about cell movement and the journeys from one to another sounds out in the space, set to music by Mindy Dillard. What I am writing about here is my personal account of the actions I engage in, one facet of these evenings—choreographing participants’ inner experiences.Figure 3. Image: Keira Heu-Jwyn Chang. Performers: Artists in the Burning project. “water burns sun”. Burning. 2009. My desires echo Lorde’s poem: “I want you”—there’s a sensual desire in me when I set up these movement meditation scenes, a delight in an erotic language and voice touch that is not predicated on sexual contact, but on intimacy, and on the borderlines, the membranes of the ear and the skin; ‘to know’—I continue to be intrigued and obsessed, as an artist and as a critic, by the way people envision what goes on inside them, and find agency, poetic lift, in mobilising these knowledges, in reaching from the images of bodies to the life of bodies in the world. ‘your darkness also’—not just the bright light, no, but also the fears and the strengths that hide in the blood and muscle, in the living pulsing shadow of the heart muscle pumping away, in the dark purple lobe of the liver wrapping itself around my middle and purifying, detoxifying, sifting, whatever sweeps through this body.These meditative slow practices can destabilise people. Some report that they experience something quite real, quite deep, and that there is transformation to be gained in these dream journeys. But the framing within which the Burning workshops take place question immediately the “authentic” of this experiential disclosure. The shared, the cultural, the heritage and hidden knowledge of being encultured quickly complicate any essence. This is where the element of formal enframing enters into the immediacy of experience, and into the narration of a stable, autonomous “I.” Our deepest cellular experience, the sounds and movements we listen to when we are deeply relaxed, are still cultured, are still shared, come to us in genres and stable image complexes.This form of presentation also questions practices of self-disclosure that participate in trauma narratives through what Canadian sociologist Erving Goffman has called “impression management” (208). Goffman researched the ways we play ourselves as roles in specific contexts, how we manage acts of disclosure and knowledge, how we deal with stigma and stereotype. Impression management refers to the ways people present themselves to others, using conscious or unconscious techniques to shape their image. In Goffman’s framing of these acts of self-presentation, performance and dramaturgical choices are foregrounded: impression management is an interactive, dynamic process. Disclosure becomes a semiotic act, not a “natural,” unfiltered display of an “authentic” self, but a complex engagement with choices. The naming and claiming of bodily trauma can be part of the repertoire of self-representation, a (stock-)narrative that enables recognition and hence communication. The full traumatic narrative arc (injury, reaction, overcoming) can here be a way to manage the discomfort of others, to navigate potential stigma.In Burning, by-passing verbal self-disclosure and the recitation of experience, by encountering ourselves in dialogue with our insides and with foreign elements in this experiential way, there is less space for people to speak managed, filtered personal truths. I find that these truths tend to either close down communication if raw and direct, or become told as a story in its complete, polished arc. Either form leaves little space for dialogue. After each journey through bodies, cells, through liver and heart, breath and membrane, audience members need to unfold for themselves what they felt, and how that felt, and how that relates to the stories of cancer, environmental toxins and invasion that they know.It is not fair. We should be able to have dialogues about “I am poisoned, I live with environmental sensitivities, and they constrict my life,” “I survived cancer,” “I have multiple sclerosis,” “I am autistic,” “I am addicted to certain substances,” “I am injured by certain substances.” But tragedy tugs at these stories, puts their narrators into the realm of the inviolate, as a community quickly feel sorry for these persons, or else feels attacked by them, in particular if one does not know how to help. Yes, we know this story: we can manage her identity for her, and his social role can click into fixity. The cultural weight of these narratives hinders flow, become heavily stigmatised. Many contemporary writers on the subjects of cancer and personhood recognise the (not always negative) aspects of this stigma, and mobilise them in their narratives. As Marisa Acocella Marchetto in the Cancer-Vixen: A True Story puts it: ‘Play the cancer card!’ (107). The cancer card appears in this graphic novel memoir in the form of a full-page spoof advertisement, and the card is presented as a way to get out of unwanted social obligations. The cancer card is perfectly designed to create the communal cringe and the hasty retreat. If you have cancer, you are beyond the pale, and ordinary rules of behavior do no longer apply. People who experience these life-changing transformational diagnoses often know very well how isolating it can be to name one’s personal story, and many are very careful about how they manage disclosure, and know that if they choose to disclose, they have to manage other people’s discomfort. In Burning, stories of injury and hurt swing in the room with us, all of these stories are mentioned in our performance program, but none of them are specifically given individual voice in our performance (although some participants chose to come out in the sharing circle at the end of the event). No one owns the diagnoses, the identity of “survivor,” and the presence of these disease complexes are instead dispersed, performatively enacted and brought in experiential contact with all members of our temporary group. When you leave our round, you most likely still do not know who has multiple sclerosis, who has substance addiction issues, who is sensitive to environmental toxins.Communication demands territorialisation, and formal experimentation alone, unanchored in lived experience, easily alienates. So how can disclosure and the storytelling self find some lift, and yet some connection, too? How can the Burning cell imaginary become both deep, emotionally rich and formal, pointing to its constructed nature? That’s the question that each of the Olimpias’ community performance experiments begins with.How to Host a Past Collective: Setting Up a CirclePreceding Burning, one of our recent performance investigations was the Anarcha Project. In this multi-year, multi-site project, we revisited gynecological experiments performed on slave women in Montgomery, Alabama, in the 1840s, by J. Marion Sims, the “father of American gynecology.” We did so not to revictimise historical women as suffering ciphers, or stand helpless at the site of historical injury. Instead, we used art-based methods to investigate the heritage of slavery medicine in contemporary health care inequalities and women’s health care. As part of the project, thousands of participants in multiple residencies across the U.S. shared their stories with the project leaders—myself, Aimee Meredith Cox, Carrie Sandahl, Anita Gonzalez and Tiye Giraud. We collected about two hundred of these fragments in the Anarcha Anti-Archive, a website that tries, frustratingly, to undo the logic of the ordered archive (Cox et al. n.p).The project closed in 2008, but I still give presentations with the material we generated. But what formal methods can I select, ethically and responsibly, to present the multivocal nature of the Anarcha Project, given that it is now just me in the conference room, given that the point of the project was the intersection of multiple stories, not the fetishisation of individual ones? In a number of recent presentations, I used a circle exercise to engage in fragmented, shrouded disclosure, to keep privacies safe, and to find material contact with one another. In these Anarcha rounds, we all take words into our mouths, and try to stay conscious to the nature of this act—taking something into our mouth, rather than acting out words, normalising them into spoken language. Take this into your mouth—transgression, sacrament, ritual, entrainment, from one body to another.So before an Anarcha presentation, I print out random pages from our Anarcha Anti-Archive. A number of the links in the website pull up material through chance procedures (a process implemented by Olimpias collaborator Jay Steichmann, who is interested in digital literacies). So whenever you click that particular link, you get to a different page in the anti-archive, and you can not retrace your step, or mark you place in an unfolding narrative. What comes up are poems, story fragments, images, all sent in in response to cyber Anarcha prompts. We sent these prompts during residencies to long-distance participants who could not physically be with us, and many people, from Wales to Malaysia, sent in responses. I pull up a good number of these pages, combined with some of the pages written by the core collaborators of our project. In the sharing that follows, I do not speak about the heart of the project, but I mark that I leave things unsaid. Here is what I do not say in the moment of the presentation—those medical experiments were gynecological operations without anesthesia, executed to close vaginal fistula that were leaking piss and shit, executed without anesthesia not because it was not available, but because the doctor did not believe that black women felt pain. I can write this down, here, in this essay, as you can now stop for a minute if you need to collect yourself, as you listen to what this narrative does to your inside. You might feel a clench deep down in your torso, like many of us did, a kinesthetic empathy that translates itself across text, time and space, and which became a core choreographic element in our Anarcha poetics.I do not speak about the medical facts directly in a face-to-face presentation where there is no place to hide, no place to turn away. Instead, I point to a secret at the heart of the Anarcha Project, and explain where all the medical and historical data can be found (in the Anarcha Project essay, “Remembering Anarcha,” in the on-line performance studies journal Liminalities site, free and accessible to all without subscription, now frequently used in bioethics education (see: http://www.liminalities.net/4-2). The people in the round, then, have only a vague sense of what the project is about, and I explain why this formal frame appears instead of open disclosure. I ask their permission to proceed. They either give it to me, or else our circle becomes something else, and we speak about performance practices and formal means of speaking about trauma instead.Having marked the space as one in which we agree on a specific framework or rule, having set up a space apart, we begin. One by one, raw and without preamble, people in the circle read what they have been given. The meaning of what they are reading only comes to them as they are reading—they have had little time to familiarise themselves with the words beforehand. Someone reads a poem about being held as a baby by one’s mother, being accepted, even through the writer’s body is so different. Someone reads about the persistence of shame. Someone reads about how incontinence is so often the borderline for independent living in contemporary cultures—up to here, freedom; past this point, at the point of leakage, the nursing home. Someone reads about her mother’s upset about digging up that awful past again. Someone reads about fibroid tumors in African-American women. Someone reads about the Venus Hottentott. Someone begins to cry (most recently at a Feminisms and Rhetorics conference), crying softly, and there is no knowing about why, but there is companionship, and quiet contemplation, and it is ok. These presentations start with low-key chatting, setting up the circle, and end the same way—once we have made our way around, once our fragments are read out, we just sit and talk, no “presentation-mode” emerges, and no one gets up into high drama. We’ve all taken strange things into our mouths, talked of piss and shit and blood and race and oppression and love and survival. Did we get free of ourselves, of the inevitability of narrative, in the attention to articulation, elocution, the performance of words, even if just for a moment? Did we taste the words on our tongues, material physical traces of a different form of embodiment? Container/ConclusionThe poet Anne Carson attended one of our Anarcha presentations, and her comments to us that evening helped to frame our subsequent work for me—she called our work creating a container, a vessel for experience, without sharing the specifics of that experience. I have since explored this image further, thought about amphorae as commemorative vases, thought of earth and clay as materials, thought of the illustrations on ancient vessels, on pattern and form, flow and movement. The vessel as matter: deterritorialising and reterritorialising, familiar and strange, shaping into form, and shaped out of formlessness, fired in the light and baked in the earth’s darkness, hardened only to crumble and crack again with the ages, returning to dust. These disclosures are in time and space—they are not narratives that create an archive or a body of knowledge. They breathe, and vibrate, and press against skin. What can be contained, what leaks, what finds its way through the membrane?These disclosures are traces of life, and I can touch them. I never get bored by them. Come and sit by my side, and we share in this river flow border vessel cell life.ReferencesBritzman, Deborah P. "Is There a Queer Pedagogy? Or, Stop Reading Straight." Educational Theory 45:2 (1995): 151–165. Burning. The Olimpias Project. Berkley; Eugene; Fort Worden. May-October, 2009Deleuze, Gilles, and Felix Guattari. A Thousand Plateaus: Capitalism and Schizophrenia. Trans. Brian Massumi. Minneapolis: University of Minnesota Press, 1987.Foucault, Michel. The History of Sexuality: Vol. 2. The Use of Pleasure. Trans. Robert Hurley. New York: Vintage, 1985.Goffman, Erving. Presentation of Self in Everyday Life. New York: Anchor, 1969Kuppers, Petra. “Remembering Anarcha: Objection in the Medical Archive.” Liminalities: A Journal of Performance Studies 4.2 (2006): n.p. 24 July 2009 < http://liminalities.net/4-2 >.Cox, Aimee Meredith, Tiye Giraud, Anita Gonzales, Petra Kuppers, and Carrie Sandahl. “The Anarcha-Anti-Archive.” Liminalities: A Journal of Performance Studies 4.2 (2006): n.p. 24 July 2009 < http://liminalities.net/4-2 >.Lorde, Audre. Sister Outsider: Essays and Speeches. Berkeley: The Crossing Press, 1984.Marchetto, Marisa Acocella. Cancer Vixen: A True Story. New York: Knopf, 2006.St. Pierre, Elizabeth Adams. “Circling the Text: Nomadic Writing Practices.” Qualitative Inquiry 3.4 (1997): 403–18.

Il presente lavoro prende vita da un progetto di ricerca finanziato dall’Organizzazione Toscana Trapianti (OTT) nato per indagare il fenomeno delle opposizioni alla donazione di organi e tessuti all’interno della Regione Toscana. Lo studio intende approfondire il fenomeno delle opposizioni attraverso tre progetti di ricerca integrati. This thesis born from a research project funded by Toscana Transplant Organization (OTT) created to investigate the phenomenon of opposition to organ and tissue donation within the Tuscany Region. The study intends to investigate the phenomenon of opposition through three integrated research projects