This chapter contains sections titled: Introduction Conceptual Issues Decision Issues Conclusion References Further reading.

The notion of 'quality of life' frequently features in discussions about how it is appropriate to treat folk at the beginning and at the end of life. It is argued that there is a disjunction between its use in these two areas (1). In the case of disabled babies at the very beginning of life, 'quality of life' considerations are frequently used to justify enforced death on the basis that the babies in question would be better off dead. At (...) times, babies with severe disabilities are thus allowed to die or even killed. In the case of terminally ill people 'quality of life' is also important in guiding the actions of doctors. However, in the case of individuals who do not wish to live any longer because their quality of life is so poor that they would rather be dead, quality of life is likely to be dropped as a guiding principle. Thus patients who wish to die and ask to be killed, will most often be forced to endure enforced life. (shrink)

Epicurus wrote that death cannot be bad for a person who dies, since when someone dies they no longer exist to be the subject of harm. But his conclusion also applies in the converse: Death cannot be good for someone, since after their death they will not exist to be the subject of benefit. This conclusion is troubling when it is brought to bear on the question of physician assisted suicide. If Epicurus is right, as I think he is, then (...) it means that even when someone is dying of a long and painful illness, we cannot say that they would be better off dead. I defend this conclusion by first presenting Epicurus’s argument, and defending it against some of its more important contemporary critics. I then re-examine the conclusion that someone cannot be better off dead by looking at the issue of mercy killing and euthanasia. Drawing on the work of philosophers who examine the ethics of animal euthanasia, I argue that killing someone who is suffering severe agony can be good, but it cannot be good for the person who suffers – it is just good in itself. This, I think, is why we have the intuitions that we do around physician assisted suicide: we are mistaken about the idea that someone can be better off dead, but we can be correct in thinking that sometimes someone’s death is good. (shrink)

The hashtag #RepresentationMatters is widely used among disability activists on social media because disabled people are often simply ignored in popular culture. Several disabled characters inhabit the Avatar: The Last Airbender universe, but Toph Beifong is the most prominent. Toph is a major character who plays an essential role in the victory over the Fire Nation's imperialism. A rarity in media, Toph's character has as much depth as any member of Team Avatar. The “Irrationally and Infectiously Happy (...) class='Hi'>Disabled Person” is a master narrative that contrasts with Disabled Person Better Off Dead, but which is also damaging to disabled people. Barnes argues that hermeneutical injustice appears when disabled people try but fail to make sense of their experience of flourishing with a disability because it is so commonly assumed that disability consigns a person to a horrific, tragic fate. (shrink)

The 14 chapters in _Ethics at the End of Life: New Issues and Arguments_, all published here for the first time, focus on recent thinking in this important area, helping initiate issues and lines of argument that have not been explored previously. At the same time, a reader can use this volume to become oriented to the established questions and positions in end of life ethics, both because new questions are set in their context, and because most of the chapters—written (...) by a team of experts—survey the field as well as add to it. Each chapter includes initial summaries, final conclusions, and a Related Topics section. TABLE OF CONTENTS John K. Davis, "Introduction" Geoffrey Scarre, "Is it possible to be better off dead?" Taylor W. Cyr, "How Does Death Harm the Deceased?" Benjamin Mitchell-Yellin, "The Significance of an Afterlife" Jens Johansson, "The Severity of Death" John K. Davis, "Defining Death" James Stacey Taylor, "Autonomy, Competence, and End of Life" Eric Vogelstein, "Deciding for the Incompetent" Paul T. Menzel, "Change of Mind: An Issue for Advance Directives" Nancy S. Jecker, "Medical Futility and Respect for Patient Autonomy" Paul T. Menzel, "Refusing Lifesaving Medical Treatment and Food and Water by Mouth" Thomas S. Huddle, "Suicide, Physician-Assisted Suicide, the Doing-Allowing Distinction and Double Effect" Michael Cholbi, "Grief and End of Life Surrogate Decision-making" Bruce Jennings, "Solidarity near the End of Life: The Promise of Relational Decision-making in the Care of the Dying" Colin Farrelly, "Justice and the Aging of the Human Species". (shrink)

The 14 chapters in _Ethics at the End of Life: New Issues and Arguments_, all published here for the first time, focus on recent thinking in this important area, helping initiate issues and lines of argument that have not been explored previously. At the same time, a reader can use this volume to become oriented to the established questions and positions in end of life ethics, both because new questions are set in their context, and because most of the chapters—written (...) by a team of experts—survey the field as well as add to it. Each chapter includes initial summaries, final conclusions, and a Related Topics section. TABLE OF CONTENTS John K. Davis, "Introduction" Geoffrey Scarre, "Is it possible to be better off dead?" Taylor W. Cyr, "How Does Death Harm the Deceased?" Benjamin Mitchell-Yellin, "The Significance of an Afterlife" Jens Johansson, "The Severity of Death" John K. Davis, "Defining Death" James Stacey Taylor, "Autonomy, Competence, and End of Life" Eric Vogelstein, "Deciding for the Incompetent" Paul T. Menzel, "Change of Mind: An Issue for Advance Directives" Nancy S. Jecker, "Medical Futility and Respect for Patient Autonomy" Paul T. Menzel, "Refusing Lifesaving Medical Treatment and Food and Water by Mouth" Thomas S. Huddle, "Suicide, Physician-Assisted Suicide, the Doing-Allowing Distinction and Double Effect" Michael Cholbi, "Grief and End of Life Surrogate Decision-making" Bruce Jennings, "Solidarity near the End of Life: The Promise of Relational Decision-making in the Care of the Dying" Colin Farrelly, "Justice and the Aging of the Human Species". (shrink)

The 14 chapters in Ethics at the End of Life: New Issues and Arguments, all published here for the first time, focus on recent thinking in this important area, helping initiate issues and lines of argument that have not been explored previously. At the same time, a reader can use this volume to become oriented to the established questions and positions in end of life ethics, both because new questions are set in their context, and because most of the chapters--written (...) by a team of experts--survey the field as well as add to it. Each chapter includes initial summaries, final conclusions, and a Related Topics section. TABLE OF CONTENTS John K. Davis, "Introduction" Geoffrey Scarre, "Is it possible to be better off dead?" Taylor W. Cyr, "How Does Death Harm the Deceased?" Benjamin Mitchell-Yellin, "The Significance of an Afterlife" Jens Johansson, "The Severity of Death" John K. Davis, "Defining Death" James Stacey Taylor, "Autonomy, Competence, and End of Life" Eric Vogelstein, "Deciding for the Incompetent" Paul T. Menzel, "Change of Mind: An Issue for Advance Directives" Nancy S. Jecker, "Medical Futility and Respect for Patient Autonomy" Paul T. Menzel, "Refusing Lifesaving Medical Treatment and Food and Water by Mouth" Thomas S. Huddle, "Suicide, Physician-Assisted Suicide, the Doing-Allowing Distinction and Double Effect" Michael Cholbi, "Grief and End of Life Surrogate Decision-making" Bruce Jennings, "Solidarity near the End of Life: The Promise of Relational Decision-making in the Care of the Dying" Colin Farrelly, "Justice and the Aging of the Human Species". (shrink)

continent. 1.4 (2011): 242—252. Introduction The following two works were produced by visual artist Jonas Staal and writer Vincent W.J. van Gerven Oei during a visit as artists in residence at The Bag Factory, Johannesburg, South Africa during the summer of 2010. Both works were produced in situ and comprised in both cases a public intervention conceived by Staal and a textual work conceived by Van Gerven Oei. It was their aim, in both cases, to produce complementary works that could (...) be read “through each other,” in which the movement of artistic construction would be imitated by textual deconstruction and vice versa. Both works deal with the way in which capital, apartheid, and monumentality are interwoven in South-African society. The Missing Link addresses a monument for democracy, erected on the premises of a private corporation running both an amusement park and the Apartheid Museum franchise. The textual intervention accompanying this public intervention investigates the limits of the inclusiveness of the anti-discrimination section in the South-African constitution, itself a monumental work of democracy. The Monument for the Distribution of Wealth deals with the history and eventual dissolution of a monumental square, commemorating the Soweto Uprising, in one of the poorest townships of Johannesburg. The history accompanying this public dismemberment of memory is equally fragmented, which is expressed by the many voices recounting uncertain and perhaps even irrelevant “facts” about the genius loci, the way in which the memorial space has actually entered into the memory of the inhabitants surrounding it. Next to their individual practices, Staal and Van Gerven Oei have worked together on a number of projects ever since 2007, including several art residencies. Their work involves an investigation of the different interfaces between art, politics, and public space in media ranging from theater and public interventions, to video installations and (co-authored) textual works. The Missing Link Missing Link (1) Missing Link (2) Missing Link (3) Intervention on the monument entitled The Seven Pillars of the Constitution , part of the Apartheid Museum in Johannesburg, South Africa. The Seven Pillars represent the constitutional values propagated in South Africa since the abolition of the apartheid regime. The monument and museum were built by the Gold Reef Resorts corporation, which is also responsible for the theme park and casino next to it. By placing the word “capitalism” on the wall surrounding the museum, the capitalist system and the constant social divisions that it implies are interpreted as sophistic continuations of apartheid politics. Through the capitalist system, apartheid is still operational within South African society. Whereas during the apartheid regime, the separation clearly ran along race divisions, in the current, “democratic” system, the same actual separation is sustained without it being an explicit element of the foundations of the country, i.e. the constitution. This intervention foregrounds the constant role of capitalism is both periods. At the same time the intervention acknowledges that contemporary Western artisthood is a mirror of the privileges that are offered by the capitalist system, and the type of artist that it produces. The intervention initiates a critical discourse concerning the capitalist system situated within the disaster of capitalism itself, in other words: through the desire to break with the presumption that art would be able to operate outside the capitalist system and to confirm that art—and the artist himself—is in fact modeled on this system. The public intervention by Staal was supplemented by a textual intervention by Van Gerven Oei: a proposition to alter the seventeenth amendment of the South African constitution. Even though the anti-discrimination legislation in South-Africa is one of the most stringent and inclusive in the world, one factor—wealth—remains outside its scope, thus continuing the schisms along racial lines produced during the apartheid regime: §9.3. The state may not unfairly discriminate directly or indirectly against anyone on one or more grounds, including race, gender, sex, pregnancy, marital status, ethnic or social origin, colour, sexual orientation, age, disability, religion, conscience, belief, culture, language, birth, and wealth. Monument for the Distribution of Wealth Intervention concerning the June 16 Memorial Acre in Central Western Jabavu, one of the poorest townships of Johannesburg. The monument comprises a park on which different are placed recalling an important protest the black population against the former apartheid regime. In 1976, from a school adjacent to the park, they started a massive protest against the introduction of Afrikaans in the school curriculum. The police reacted violently, and shot several hundreds of students. The construction of the June 16 Memorial Acre was started in 2005, and from the start was the paragon of corruption. Coordinated by local politicians, some family members of the protest leader from 1976 gained control of the realization of the monument, outside the regulation through external institutions. The available budget of 41 million rand (at that time well over 5 million euro) was largely embezzled. In the meantime, the monument has become fully dilapidated and defaced. The park has become overgrown with weeds and covered in a layer of dirt, and the local population is slowly plundering the square to use the material for the construction and decoration of their own houses. The Monument for the Distribution of Wealth develops the dynamics already existent around the June 16 Memorial Acre. Without obtaining official permission in advance, several local inhabitants were hired to break down the monument, sort the materials, and offer it to the neighborhood. Thus, the redistribution of wealth after the fall of the apartheid regime is finally taking place, albeit from the mere remains of the capital that was once invested in the community. The words “monument” and “for free” are spray-painted on the stacks of material, both in English and Zulu, as these are locally the most common languages. Van Gerven Oei supplemented Staal’s public intervention with an account of the history of the monument based on a series of interviews. The account clarifies how the different interests within the protest 1976 are reflected in the exceeding decay of the park, and how in the end those interests were represented by the June 16 Memorial Acre. Monument for the Distribution of Wealth 1: Removing stones Monument for the Distribution of Wealth 3: Pulling down statues Monument for the Distribution of Wealth 4: Offering the material Monument for the Distribution of Wealth 5: Offering the material Monument for the Distribution of Wealth 6 The next day A Fragmentary History of the Monument for the Distribution of Wealth, Formerly Known as the June 16 Memorial Acre in Central Western Jabavu, Soweto Vincent W.J. van Gerven Oei The following text, based on interviews and online research aims to provide parts of a history of the park in front of Morris Isaacson High School in Central Western Jabavu, Soweto. The idea for the transformation of the park into a memorial site has its source in the events of June 16, 1976: the start of the the student uprising in Soweto. The development of the park was started in the early 1980s, and the actual transformation into a memorial site, the June 16 Memorial Acre, was initiated in 2005. Over the last few years, several monumental additions have been made to the park: A marble monument with three pillars was revealed on June 16, 2006. A sculpture of a book and several billboards on June 16, 2008. A sculpture of student leader Tsietsi Mashinini on June 16, 2010. The park was transformed into the Monument for the Distribution of Wealth on August 3, 2010. According to the entry “Youth Struggle” on the website South African History Online, the Bantu Education Act was introduced in 1953 . In 1954 , Dr Verwoerd, Minister of Native Affairs, stated: “What is the use of teaching the Bantu child mathematics when it cannot use it in practice? That is quite absurd.” According to the entry “Soweto uprising” on Wikipedia, the Afrikaans Medium Decree was issued in 1974 , forcing all black schools to use Afrikaans and English in a 50-50 mix as languages of instruction. The Regional Director of Bantu Education (Northern Transvaal Region), J.G. Erasmus, told Circuit Inspectors and Principals of Schools that from January 1, 1975 , Afrikaans had to be used for mathematics, arithmetic, and social studies from standard five (7th grade). English would be the medium for general science and practical subjects. Indigenous languages would be used for religion instruction, music, and physical culture. According the entry “Soweto uprising” on Wikipedia, on April 30, 1976 , students from the Orlando West Junior School in Soweto went on strike, refusing to go to school. Their example was followed by other schools in Soweto. A student from Morris Isaacson High School, Toboho “Tsietsi” Mashinini, proposed a meeting on June 13, 1976 to discuss further action. According to Weizmann Hamilton’s article “The Soweto Uprising 1976,” which appeared in the September 1986 edition of Inqaba Ya Basebenzi (Fortress of the Revolution), on June 13, 1976 , the South African Students’ Movement called a meeting at the Donaldson Community Center in Orlando. 300-400 Students representing 55 schools decided to hold a mass demonstration on June 16. According to Brian Mokhele, member of the Joint Community Safety Forum, Dr Edelstein was the first victim of the Soweto uprising and killed the day before the march on June 15, 1976 . Edelstein was an administrator at the pass office in Jabavu and gave golf courses to the local community. Edelstein was put in a garbage bin and pierced by pickaxes. The garbage bin was left at the very spot of the murder for many years. A few years ago, a child was beheaded at the same spot, and the basketball court next to it has been abandoned since. According to Marcus Neustetter, founder of the Trinity Session, this story is untrue. According the entry “Soweto uprising” on Wikipedia, on June 16 , Tsietsi Mashinini led students from Morris Isaacson High School to join up with others who walked from Naledi High School. A crowd of between 3,000 and 10,000 eventually ended up near Orlando High School. According to Raymond Marlowe, a local photographer, Tsietsi Mashinini was heading the march. According to the entry “Hector Pieterson” on Wikipedia, Dr Edelstein died on June 16, 1976 , stoned to death by mob and left with a sign around his neck proclaiming “Beware Afrikaaners.” The first child to die that day was called Hastings Ndlovu. According to Pat Motsiri, Orlando West is claiming struggle heritage through the Hector Pieterson Museum, while Hector Pieterson was from Jabavu. According to Pat Motsiri, his generation effectively struggled between 1980 and 1991, forcing the release of Nelson Mandela and negotiations with the apartheid regime while the 1976-generation was safely in exile. Nevertheless, this has not been recognized in any monument. After the abolition of apartheid, the generation from 1976 returned from exile, occupied important government and ANC positions, creating an abundance of 1976 memorials and refusing to acknowledge that this was only possible because of the younger generation’s struggle. He calls this a generational conflict. According to Archibald Dlamini, the park officer responsible for the Memorial Acre, he started working for the municipality in 1978. In 1981/82 , Isaac Makhele from Pimville, who used to work in the cemetery business, was the first developer of the park. It used to be just a normal park until City Parks decided to develop the Memorial Acre in 2006. In 2007 the work was stopped by the community. According to Brian Mokhele, he left the country in 1989 after he participated in the riots of 1986. But when he returned in 1999 he found that nothing had changed. He says that they were promised to be protected by the Constitution, but that reality is different. The police uses fear to suppress them so that they don’t come out to talk openly. He has been arrested twice, both times harassed and tortured by the police, but in the end always released without indictment. He says that this is their way to threaten communities to back off from politics. According to Moses, who is sitting outside rolling a joint, Brian knows everything. He tells Brian to tell me everything he knows. According to Brian Mokhele, Tsietsi Mashinini was possibly murdered in 1990 during his exile in New York. Two weeks before he was supposed to return to South Africa, his papers in order, he was found dead under mysterious circumstances. His coffin was sealed when he was buried. According to Pat Motsiri, he came up with the idea for the Memorial Acre in 2003 . He submitted the documents for the proposal to the council, which sidelined him as soon as the budget came out in 2005 . According to Brian Mokhele, there was on estimation R 41,000,000 spent to redesign the park and turn it into the Memorial Acre. The millions were divided by Amos Masondo, the mayor of Soweto, the local councilor Bongani D. Zondi, and the director of the city of Johannesburg, Pat Lephunya. They were dividing the money between several contractors: Tsietsi Mashinini’s brothers were involved in the development of the park, they got the tender to do the green areas, the landscaping. Construction was done by other companies, some did the paving, the toilets, etc. EMBA, a private company appointed by the municipality was in control of the money flow, but the money was quickly gone. According to Raymond Marlowe, the contractor bought a BMW with the money. According to Archibald Dlamini, the Mashinini brothers got the tender, so the space would look more like the other places around in Soweto. It was agreed that after they were done, they would return the property to the municipality. They did whatever they could do. According to Mafaisa, a member of the Jabavu business community, he was one of the contractors for the landscaping and the pavement under Mpho Mashinini, one of the brothers. He says that I should contact Mavi for information on Mpho. According to Poi Stuurman, a local youth worker, Mafaisa is one of the guys who ran away with the money. According to Mavi, Mpho Mashinini was never a contractor. The contracts were organized by Sbu Butelezi, the former head of the Gauteng Department for Public Works. The June 16 Foundation and the Mashinini brothers will be the beneficiaries of the park when it is finished. According to Brian Mokhele, City Parks did not accept the Memorial Acre because it was not finished. The rest of the year, the unfinished park is not maintained, as should have happened. This was done deliberately so that in the end they can just clean the whole thing up and have a reason to redo the whole park. According to Brian Mokhele, the Mashinini brothers now work for the government. People that manipulate for money purposes always come from the government’s side. Because the park was left unfinished, the people from the neighborhood are taking away the stones to decorate their own homes with. According to Archibald Dlamini, because City Parks doesn’t accept responsibility of the park, he officially has nothing the guard, except for his cottage, which is municipal property. The thieves come at night and destroy the park, but he cannot do anything because he is sleeping. According to the website of the Thanda Foundation on June 16, 2006 a bronze statue of Hector Pieterson, the first child to die in the 1976 protests, made by Kobus Hattingh and Jacob Maponyane was unveiled in the Maponya Mall in Soweto. The statue is sculpted after the famous image shot by Sam Nzima of Mbuyisa Makhubo carrying the dead body of the boy. The sculpture was sponsored by the Thanda Foundation, founded by the Swedish entrepreneur Dan Olofsson and South-African entrepreneur Matthews Phosa. According to the official website of the City of Johannesburg, the Memorial Acre and Artwork were unveiled in 2006. According to a blog post on sowetouprisings.com, the Memorial Acre was still under development on July 24, 2006. According to Archibald Dlamini, City Parks only cleans up the park once a year just before the June 16 celebrations. Everybody is waiting for the Mashinini brothers to finish their job. The last time he talked with them was in 2007 . According to a sign on the school grounds of the Morris Isaacson High School, the June 16 Trail will be finished in 2008 . According to a blog post on sowetouprisings.com, the Memorial Acre contains another monument erected in Tsietsi’s honor. The monument was created as part of the Sunday Times Heritage Public Art program. Its physical form resembles a giant book which symbolizes the crisis in education experienced in 1976. On the face of the book is the map of the route taken by the students from Morris Isaacson High School in Central Western Jabavu to Phefeni Junior Secondary in Orlando West (currently the site of the Hector Pieterson Museum), while the back cover of the ‘book’ is inscribed with a tribute to Tsietsi Mashinini. The monument was revealed on June 16, 2008 . According to Marcus Neustetter, the billboards on the Memorial Acre were part of a school project realized in 2008. Following several workshops, the students from different high schools along the June 16 Trail were invited to work with artists on the billboards, while the neighborhood community was invited to watch the process during the festivities on June 15 and 16, 2008 . The billboards were supposed to be removed because of construction works on the Memorial Acre, which never ended up happening. According to Brian Mokhele, the former toilet facilities were converted into a house for the park officer. This park officer has been working for city parks for more than 12-15 years, but does nothing here, because the park, including the new toilet buildings, is not finished. The government is now moving around looking for people to take this job because they stopped it. They confronted everybody who was going in and chased them away. According to John, in 2009 , some girls, around 16 or 17 years old, were raped by four men who had been drinking in a local shebeen. When the bar quit they said that they would go home by car, but instead raped the girls on the Memorial Acre nearby. This happened in the unfinished toilets, because the doors couldn’t be closed. According to Brian Mokhele, there used to be some fences around the park because of the construction work that was eventually stopped, but these were also stolen. According to Archibald Dlamini, people from the neighborhood started about two and a half years ago, and the last piece was stolen near the end of 2009 . Sometimes he would catch someone with a roll of fence, and then use it for his own cottage. According to the official website of the City of Johannesburg, a statue of Tsietsi Mashinini by Johannes Pokhela was revealed on June 16, 2010 , “Youth Day.” According to Shirley Makutoane, deputy principal of Isaac Morrison High School, the statue of Tsietsi Mashinini, funded by the June 16 Foundation, has temporarily been placed within the school perimeter. The statue will be moved to the Memorial Acre when it will be finished, in 2011 . According to Brian Mokhele, beside the June 16 Foundation, there is also a June 16 Memorial Acre Foundation. Both foundations are quarreling about the money involved in the Memorial Acre project. Nobody knows who’s involved in them. According to Marcus Neustetter, the June 16 Foundation consists of people that were part of 1976 protest movement, local government officials, representatives of the Hector Pieterson Museum, and the council. According to students from the Isaac Morrison High School, the statue of Tsietsi Mashinini is on the school ground because on the Memorial Acre it would be vandalized by youths from White City, an adjacent neighborhood. Accorcing to Brian Mokhele, the statue of Tsietsi should eventually be mounted on the Memorial Acre. It is wrong that the statue is in the school at the moment, because it is not a public school. He wants the statues to depict the massiveness of the force that was coming into Soweto after the protests. According to Brian Mokhele, City Parks, City of Jo’burg, City Lights, and SAPS are making some sort of plan to take the plan back. They want to remove the trees from the Memorial Acre, and redesign the Memorial Acre into a relaxing park, without political content. They want to depoliticize the square. In doing so,they will have their own employment and not use local workforces. According to Brian Mokhele, the community wants to remove the monuments, amphitheater, and sculptures from the Memorial Acre because they do not resemble anything. The sculptures should be depicting the truth of what happened, because the Memorial Acre is a political heritage site. He wants to involve the people that actually participated in the struggle to make the monument so that everyone can enjoy it and get a better understanding of the struggle heritage. Therefore, he proposes collective ideology in which everyone has a say. This would prevent future vandalization of the monument. According to Pat Motsiri, the sculptures must depict the event around June 16, 1976. Like the story of Dr Edelstein, who was pierced by pickaxes, forced into a garbage bin and burned alive. According to Jonas Staal, the Memorial Acre should be destroyed, its elements stacked on pallets, thus forming the Monument for the Distribution of Wealth . According to Mafaisa, his men can do the work quickly. He has about twenty men working under him. (shrink)

continent. 1.2 (2011): 136-140. In early 2011, Cow Heavy Books published The Official Catalog of the Library of Potential Literature , a compendium of catalog 'blurbs' for non-existent desired or ideal texts. Along with Erinrose Mager, I edited the project, in a process that was more like curation as it mainly entailed asking a range of contemporary writers, theorists, and text-makers to send us an entry. What resulted was a creative/critical hybrid anthology, a small book in which each page opens (...) to a new iteration of textual desire. These texts explore the material possibilities of the book. Somewhat parallel to the call of N. Katherine Hayles who, in her book Writing Machines , urges literary theorists to take up the practice of Medium Specific Analysis (to account for the way the medium in which it is presented conditions or at least bears on a literary text). I see in the imagined works of The Official Catalog a call for the innovative writers of today to become Medium-Responsive. This would mean thinking through the specific (materially constrained) possibilities offered by the media in which texts are presented, and in thinking of the literary text as a kind of art in the greater context of other arts and the book as a medium situated within the context of many other media. In doing so, the contemporary writer refutes the chorus of critics who lament the death of the book by consistently reinvigorating literary innovation. The following are selections from The Official Catalog of the Library of Potential Literature that show possible paths for (thinking about) new writing that engages with its medium. —Ben Segal, Editor THE CUBE Even the most radical non-linear texts have tended to exploit or subvert only the sequential possibilities of print—from the continuous loop of Joyce's Finnegans Wake to the shuffled cards of Marc Saporta's Composition No. 1 —but The Cube takes such multiplicities to an entirely new level. Set in a grid, the book's words can be read conventionally, across the page, as well as down each column—with either route making complete grammatical sense. But they can also be read as stacked strata and mined like lexical core samples through the layered pages of the book. Each path tells the same story from a different perspective (the narrative, naturally, hinges on the potential outcomes of a throw of cubed dice). By opening up the z-axis to reading in this way, The Cube recognizes the book as a three-dimensional sculptural space. Taking its lead from Armand Schwerner's (If Personal) and Raymond Queneau's Cent mille milliards de poèmes , The Cube reads like a experiment by Christian Bök precision printed by Emily McVarish. Craig Dworkin is the editor, most recently, of The Consequence of Innovation: 21st Century Poetics (Roof Books, 2008), The Sound of Poetry/The Poetry of Sound , with Marjorie Perloff (U. Chicago Press, 2009), and Against Expression: An Anthology of Conceptual Writing , with Kenneth Goldsmith (Northwestern UP, 2010). He teaches at the University of Utah. HE GOES In He Goes , we read notes, letters and e-mails from a scholar father to his novelist daughter. We read of the father's musings on Beckett, on Pinter, on Anne Frank; his description of a woman hanging laundry from a line. We read about his journey toward dying, followed by a brief, third person account of his death, and his obituary. Then a long series of blank pages that demand to be read in real time, non-sentence by non-sentence, blank page by blank page. Finally—and it is here that this peculiar little book begins to soar—the dead father writes to his as-of-yet-still-living daughter. He does not write from death. He does not write from life. The words unprint, unstamp, unkindle. Still, they require no translation. The father "writes" (for lack of a better word) about the serendipitous, the commonplace; he recommends another book. He jokes. He asks his daughter how her stomach is. He says forget about presence in absence, darling; screw words as memorial and the guys in garbage cans and loss as redemption and I can't go on I must go on. He goes, "Love, Fodder." He goes, "incidentally." He goes, "I thought you might like to know." Elizabeth Graver is the author of a story collection, Have You Seen Me? , and three novels: Unravelling ; The Honey Thief ; and Awake . Her work has been anthologized in Best American Short Stories , Best American Essays , and Prize Stories: the O. Henry Awards . She teaches at Boston College. THE PAPER ARCHIVIST A stunning package and a triumph of imagination, The Paper Archivist at times looks to be less a book than an abstract expressionist painting. Softly bound, its contents unfold to a single sheet of uneven thickness and texture—a canvas splattered with colored lines, stickers, broken sentences, and nonsense pictographs. But by following the directions to fold, dip, smell, rub, scratch, and tear the sheet according to the contingencies of the weather and using only the objects at hand, the reader slowly brings the forces hidden in the noise into a glorious sculptural convergence, processing a different story and shape each time. This is the rare book that continues to stir, whirl, and pop on every new reading. Sean Higgins blogs at BOMBlog where he is responsible for the column Volumes and Territories, as well as Ghost Island , a fledgling collaborative intellectual collective. THE SLOW BOOK The Slow Book , written by an anonymous author at the dawn of literacy, on a minor planet (otherwise notable only as the source of that exceptionally hardy, not very tasty grain called “shef” sowed on hostile planets as an early step to colonization), and encoded into a series of punctures on a strip of copper coiled inside a clever device, something between a player piano and an old-fashioned film projector, is being released into print, as was the author’s intention, at a rate of one word per century (local time). Each word is, across the Forty Galaxies, agreed to be uncannily apt for the century in which it appears—even “of,” in a century during which the highest value was attached to fidelity, whether to ideals, worlds, or romantic love; even “the,” which governed two centuries, one extraordinarily materialistic, during which advances in propulsion and navigation accelerated the exchange of exceptional objects between the remotest planets of the Forty, and one in which the central concern, both of philosophers and the common man, was whether, in an age of rapidly proliferating hypothetical worlds, anyone or anything concretely existed at all. Even those words published long before interstellar contact can be seen in retrospect to have transgalactic pertinence. As a result, attempts to abstract the machine from its publishers, Hobson & Hui, in order to “predict the future” for insight or gain by “fast- forwarding” the copper strip have been many and ingenious. While, in centuries of skepticism (“maybe”), or of unrest (“go”) the book has been nearly forgotten, in others it seems to haunt every thought, every deed, despite the fact that the subject of The Slow Book is still unclear. So far only a few sentences exist in print; everyone knows them, can quote them, offer the standard exegeses and assorted heresies; yet certainties are the stuff of adolescence; mature readers are forced to acknowledge that these sentences are probably only a preamble to the main argument. They contain no proper nouns, nor can we identify any definite theme. There is even disagreement about their tone, whether coolly ironic, as some insist, or ardent. The appearance of an unusual grammatical case, sometimes called the future pluperfect continuous, used to describe events that at some future point will have always been true (but are not yet)—hitherto known to appear only in the synthetic dogmas of the Thanatographical Society, and in certain highly circumscribed religious contexts—has suggested to some scholars that the Slow Book was originally intended for ritual use, but the proximity of the usage to a term designating a small hand plow that, as Pott and Mielcke have convincingly shown, would have borne a distinctly obscene double meaning in its culture of origin in the author’s time, argues otherwise. It is likewise unclear whether the situation that seems to be—with teasing incompleteness—sketched out in these few lines is intended as an illustration of general principles, a case study, a dramatic scene, or an extended metaphor. In short, we have no idea what The Slow Book is about. In our own time, we believe that it is almost certainly a work of fiction, but that may be because we live in the century of “if”. In each age, perhaps, we see the book we most need to read. Some have dared to suggest that the metal strip is blank until, with millennial fanfare, it advances into its new position, that no ur-text exists, that the book itself is brought into being—written—by our need. But that is exactly the sort of thing we would believe, in 7645. Shelley Jackson is the author of the story collection The Melancholy of Anatomy , the novel Half Life , and hypertexts including Patchwork Girl . The recipient of a Howard Foundation grant, a Pushcart Prize, and the 2006 James Tiptree Jr Award, she has also written and illustrated several children's books, including The Old Woman and the Wave ; Sophia, the Alchemist's Dog ; and Mimi's Dada Catifesto . Her stories and essays have appeared in Conjunctions , McSweeney's , The Paris Review , and Cabinet Magazine . In 2004 she launched her project SKIN , a story published in tattoos on 2095 volunteers. THE BOOK OF SOUNDS The Book of Sounds is just that: a book of sounds made when letters are construed in new ways to bring forth out of the alphabet new forms of speech. A book meant to be read out loud, The Book of Sounds is not unlike Laurie Anderson's O Superman or Brian Eno's Music for Airports in its attempt to make music out of the most primary and simplest of methods. It breaks language down to its barest bones and makes out of the page a drum that has never before been beaten upon. Peter Markus is the author of a novel, Bob, or Man on Boat (Dzanc Books) as well as two books of short fiction, Good, Brother and The Singing Fish , both of which were published by Calamari Press. A new collection of stories, We Make Mud , is now available from Dzanc Books. PARADISE OF THE BLIND by Celan Solen Although the reclusive Celan Solen published his first and only book in 1963—paying out-of-pocket for a limited edition of the slim collection No One May Have the Same Knowledge Again —he remained in American obscurity for almost three decades. In 1992 a micro-press in Istanbul brought out No One in Turkish. A German translation followed in 1995. Soon it became clear in literary circles Solen was a world-class (if highly unclassifiable) artist—lyrical, dense, enigmatic—who could undo the conventional short story in 397 words by inventing impossible worlds housed in impossible whirls (in “Small Sadnesses,” a single chartreuse tree frog in Borneo unknowingly holds time together by its very presence in the universe, while each letter of its tale refers, not to itself, but to the one preceding it in the alphabet). By his disappearance last year, Solen was considered master by a generation of writers and critics (except, alas, for those gentlemen in the Swedish Academy). Imagine, then, that generation’s delight at the discovery, locked away in the author’s safe-deposit box, of his second and final composition. Had Lynch’s Lost Highway been book instead of film, and had it been penned by Beckett at his least certain, revised by Barthelme at his most formally deranged, and typeset by Derrida at his most semiotically catastrophic, the result might have been something like Paradise of the Blind : interlacing narratives of a man composed of borrowed organs (whose most cheerless and difficult to locate, god, could only have been invented by an empty heart), a nonexistent medieval painting blamed for the ruin of future hope, and the spread of a philosophy that holds earth a mistake constantly recurring in the dream of a fish lying on the floor of the Atlantic (if the fish wakes, our world winks off)—all contained in a text packed with typed-over passages, torn postcards, poems that can be deciphered only when held up to a mirror, pages ornamented with trompe-l'œil paperclips and coffee stains and buzzing houseflies, some busy with illegible runes that dissolve when exposed to light, three that smell like roses or lemons (depending on whether a man or woman is reading), two that stain with the bloody fingerprints of the those who handle them, one that ignites when brushed with breath, thirteen sewn from baby skin, one that moans when touched, and one that screams—yet all without mass, unimaginable, and invisible. Lance Olsen is author of more than 20 books of and about innovative fiction, including, most recently, the novels Calendar of Regrets (2010) and Head in Flames (2009). He teaches experimental narrative theory and practice at the University of Utah. SUPERSTRUCTURE! by Barbara D'Albi As soon as I opened the third drawer of Barbara D'Albi's wooden novel, everything became hopeless. Now in Ithaca, there was no going back. And it wasn't just the intricate series of shelves, hinged doors and locked drawers which D'Albi layered into the book, no, lo, I was constructed anew by the story. Who else but D'Albi to imagine a God who becomes a carpenter and gets killed?! And makes it good! You want stories? D'Albi is a skyscraper, built with planes and levers. Momentarily I wondered where I could shelve this book, and then I thought: no matter; I couldn't put it down. Adam Robinson lives in Baltimore, where he runs Publishing Genius. He is the author of Adam Robison and Other Poems and Say, Poem. 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Should parents try to give their children the best lives possible? Yes. Do parents have an obligation to give their children the widest possible set of opportunities in the future? No. Understanding how both of these things can be true will allow us to go a long way towards understanding why a Deaf couple might wish their child to be born Deaf and why we might have reason to respect this desire.

Several liberal philosophers and penal theorists have argued that the state has a reason to prohibit acts that harm individuals. But what is harm? According to one specification of harm, a person P is harmed by an act (or an event) a iff, as a result of a, P is made worse off in terms of well-being. One central question here involves the baseline against which we assess whether someone is ‘worse off’. In other words, when a person is (...) harmed he is worse off, certainly—but what is worse off a variation from? A central part of the paper critically discusses different answers to this question based on versions of what we can call: the temporal baseline, the baseline from mankind and the counterfactual baseline. Essentially, it will be argued that the counterfactual baseline leaves us with a better understanding of harming than the other baselines discussed. The final part of the paper will describe some of the implications of our investigation for the application and evaluation of the view that harm matters in the justification of which type of acts should be criminalized by the state. The overall conclusion of the paper is that adherents of a view like the harm principle face a dilemma. Either they can accept the counterfactual baseline but then, they can do without the harm principle. Or they can reject the counterfactual baseline—but then they will have to formulate an alternative baseline which, as will be shown in the paper, is no easy task. (shrink)

Despite being assailed for decades by disability activists and disability studies scholars spanning the humanities and social sciences, the medical model of disability—which conceptualizes disability as an individual tragedy or misfortune due to genetic or environmental insult—still today structures many cases of patient–practitioner communication. Synthesizing and recasting work done across critical disability studies and philosophy of disability, I argue that the reason the medical model of disability remains so gallingly entrenched is due to what I call the “ableist conflation” (...) of disability with pain and suffering. In an effort to better equip healthcare practitioners and those invested in health communication to challenge disability stigma, discrimination, and oppression, I lay out the logic of the ableist conflation and interrogate examples of its use. I argue that insofar as the semiosis of pain and suffering is structured by the lived experience of unwelcome bodily transition or variation, experiences of pain inform the ableist conflation by preemptively tying such variability and its attendant disequilibrium to disability. I conclude by discussing how philosophy of disability and critical disability studies might better inform health communication concerning disability, offering a number of conceptual distinctions toward that end. (shrink)

The study aims to analyse the clinical proceedings in pregnant women diagnosed with brain death. Apart from the diagnostic premises and the patient’s rights, the ontological status of the foetus proves to be a severe problem. In reference to the principles of zeroth-order logic, the assumption of potential used by personalists is not a tautology.

Children like Baby G, born with complex chronic medical conditions that compromise function in the long term, are an increasing presence in tertiary-level neonatal intensive care units. The parents and health-care providers of these children are faced with profoundly difficult decisions. Whether severe congenital anomalies with poor prognosis are diagnosed antenatally or are discovered at the time of birth, the issues are vexing, and the impact decisions will have on everyone in the family is profound. What should such decisions (...) be based upon? What values and principles might guide the decision-making process? What moral justifications allow for pursuing.. (shrink)

This paper asks how we should regard the laws and customs of armed conflict, and specifically the rule prohibiting the targeting of civilians. What view should we take of the moral character and significance of such rules? Some philosophers have suggested that they are best regarded as useful conventions. This view is sometimes motivated by a "deep moral critique" of the rule protecting civilians: Jeff McMahan believes for example that the existing rules protect some who ought to be liable to (...) attack (on account of their having voluntarily contributed to the injustice or aggression being resisted). He thinks we would be better off with a different principle of discrimination in warfare. But McMahan acknowledges that for the time being we must stick with the rules that we have. The present paper does five things: (1) it explores and takes further some of McMahan's insights about the importance of existing positive law in this area; (2) it argues that some of the features that philosophers find problematic with the rule offering blanket protection to all civilians have to do with administrability; (3) it raises some questions about whether the rule protecting civilians can really be regarded as a convention (and it argues that certainly it cannot be regarded as a "Lewis-convention" in a strict sense); (4) to the extent that the rule can be regarded as conventional, the paper argues that it remains a deadly serious moral rule, partly because of the circumstances of death and destruction in which it operates and which it tries to ameliorate, and partly on account of its fragility. The fifth point is the most important. (5) The rule protecting civilians does not operate in circumstances in which, apart form positive law, civilians like everyone would be liable to attack. The rule operates against a moral background in which all deliberate killing is to be regarded as murder; some deliberate killings (of combatants) are privileged in warfare; but the rule about civilians reflects the fact that this is a strictly limited privilege and that those who target civilians do not get the benefit of it. Changing our view of the default position in this way enables us to better understand the distinctive work that this rule does. (shrink)

Exploring the early development of an area of medical literature can inform contemporary medical debates. Different methods of inference include deduction, induction, abduction, and inference to the best explanation. I argue that early shaken baby research is best understood as using abduction to tentatively suggest that infants with unexplained intracranial and ocular bleeding have been assaulted. However, this tentative conclusion was quickly interpreted, by some at least, as a general rule that infants with these pathological signs were certainly cases (...) of abuse. Rather than focusing on inductive arguments, researchers today may be better off focusing on making a compelling inference to the best explanation. (shrink)

This thesis is an evaluation of the badness of disability and equality. It argues that disability poses a problem for equality and that, given the new advances in reproductive and gene technologies, egalitarians should strive to give an answer to how we should best reduce the inequality between disabled and non-disabled individuals of future generations. To support the claim that disabilities pose a problem for equality, I argue against the recently proposed Mere Difference View of disability. Firstly, the (...) view is not successful in responding to why, if disabilities are neutral, inflicting disability is still impermissible. Secondly, some intellectual disabilities, for example, do not bring about positive features capable of compensating for the negative features that they also bring about. If some disabilities are bad states of being, some disabled individuals will be worse off than non-disabled individuals other things being equal. Given that disabled individuals are subject to inequality due to their disability, I analyse how able traditional compensatory accounts of egalitarian justice are when it comes to improving this inequality. I conclude that given the existence of intellectual disabilities, traditional compensatory accounts are not fully satisfactory and that egalitarians should look at whether other means, like enhancements and preventive techniques, would do this job better. Paradoxically, techniques that lead to the reduction in the incidence of disabilities make things worse with respect to one new aspect of inequality, namely the concentration of inequality. In scenarios of disability reduction, where there are only a few remaining disabled individuals and a great number of non-disabled individuals, disabled individuals would be worse off than a great number of non-disabled individuals. This situation can potentially also have a negative impact in the wellbeing of the few remaining disabled individuals if the fact that disabled individuals become a very small minority puts less pressure in society to accommodate them. I conclude that reducing the incidence of disabilities can make things worse for inequality in at least one respect. This conclusion has crucial consequences for policy making. I recognise that the question remains about how this aspect should be weighed against the fact that scenarios of disability reduction promote utility - they contain more individuals with higher wellbeing - and against the fact that, under views that ascribe positive value to relations of equality, scenarios of disability reduction would also be, in one way, promoters of equality. (shrink)

I argue against Appel's recent proposal – in this JOURNAL – that there is a fundamental human right to sexual pleasure, and that therefore the sexual pleasure of severely disabled people should be publicly funded – by thereby partially legalizing prostitution. I propose an alternative that does not need to pose a new positive human right; does not need public funding; does not need the legalization of prostitution; and that would offer a better experience to the severely (...) disabled: charitable non-profit organizations whose members would voluntarily and freely provide sexual pleasure to the severely disabled. (shrink)

It seems that we should want to avoid becoming intellectually disabled. It is common for philosophers to infer from this that those of us without intellectual disabilities are intrinsically better off than individuals with intellectual disabilities, and that there are consequently stronger moral reasons for others to preserve our lives than to preserve the lives of intellectually disabled individuals. In this article, I argue against this inference from what states we should prefer for ourselves to how much moral (...) reason others have to maintain these states on our behalves. I argue that there is an important sense in which an outcome contributes to our well-being to a certain degree, namely the extent to which others should want it out of care for us, which plays a central role in determining the moral priority of ensuring the outcome for us over ensuring distinct outcomes for others. But an outcome's contribution to our well-being in this sense can come apart from the extent to which we should prefer it for ourselves. (shrink)

In this chapter, Fourie identifies and systematizes the impairments associated with having privilege and evaluates their implications for theories of relational equality and distributive justice. Having certain social privileges, for example, being a man in a patriarchal society, can also be damaging; in other words, there are “impairments of privilege.” Fourie delineates six kinds of impairments—epistemic, evaluative, emotional, health-related, affiliative, and moral. She then goes on to assess the implications of the impairments of privilege for two theories in political (...) philosophy. Relational egalitarianism, she argues, has the theoretical resources to identify and address the problems associated with these impairments, whereas distributive egalitarianism does not. Furthermore, she argues that assessing the impairments of privilege through relational egalitarianism helps to characterize a society of equals: we must address the causes of functional impairments, express respect for the worse off by not normalizing the experiences of the privileged, and minimize competitive positionality. (shrink)

This paper examines the impact of disability on wellbeing and presents arguments against the mere-difference view of disability. According to the mere-difference view, disability does not by itself make disabled people worse off on balance. Rather, if disability has a negative impact on wellbeing overall, this is only so because society is not treating disabled people the way it ought to treat them. In objection to the mere-difference view, it has been argued, roughly, that the view licenses the (...) permissibility of causing disability and the impermissibility of causing nondisability. In her recent article, “Valuing Disability, Causing Disability”, Elizabeth Barnes attempts to show that this causation-based objection does not succeed. We disagree and argue why. We begin by explaining that in order to defeat the causation-based objection it does not suffice to show that it is not always true that the mere-difference view licenses causing disability. Rather, license in some cases, in a way that undermines the plausibility of the mere-difference view, would be sufficient for the causation-based objection to succeed. Then our discussion turns to an important challenge for proponents of the causation-based objection: Some defenders of the mere-difference view are prepared to simply accept the counterintuitive implications of their position. A dialogue with such proponents of the mere-difference view requires arguments with independent traction. We present several such arguments to the effect that the mere-difference view needs to be significantly reduced in scope – and may turn out to be false altogether. (shrink)

It may be difficult to imagine having a severe impairment such as quadriplegia or being dependent on a respirator. There is evidence that when careproviders make treatment decisions for patients who are in these situations, we imagine the patients are worse-off than they report they are—most patients with even very severe impairments report that they greatly value being alive.1 This misperception may cause us to make treatment decisions for patients with impairments that we might not make for other (...) patients. In this article I describe how to provide better care for patients who have impairments. This includes not presupposing that the patients’ quality of life is decreased, considering with patients how outside factors may be limiting their functioning, and seeking to help offset these factors, if we can, when they exist, to avoid allowing patients’ impairments to result in their being truly “disabled.”. (shrink)

This study is a contribution to the bioethical debate about new and possibly emerging reproductive technologies. Its point of departure is the intuition, which many people seem to share, that using such technologies to select non-disease traits – like sex and emotional stability - in yet unborn children is morally problematic, at least more so than using the technologies to avoid giving birth to children with severe genetic diseases, or attempting to shape the non-disease traits of already existing children by (...) environmental means, like education. The study employs philosophical analysis for the purpose of making this intuition intelligible and judging whether it is justified. Different ways in which the moral problems posed by reproductive technologies are often framed in bioethical debates are criticised as inadequate for this task. In particular, it is argued that the intuition cannot fully be made sense of in terms of harm to the children that such technologies help create. The study attempts to elaborate an alternative to that broadly consequentialist approach, by drawing on Martin Heidegger’s philosophy of technology, Hans Jonas’s ethics, and Aristotle’s practical philosophy, as it has been received and developed in the hermeneutical tradition. It is suggested that reproductive choices, unlike decisions for already born children, are characterised by a peculiar one-sidedness: the future child appears to the parents as something wholly theirs to decide about, not as a concrete other with whom they must interact in a responsive and attuned way. This is problematic because it means that such choices cannot call upon the particularised moral understanding only gained in interpersonal encounters. In particular, it makes them easily shaped by various tendencies, to which parents are always susceptible, to relate to children in instrumentalising ways, and at risk of reinforcing such tendencies. However, this does not mean that all uses of reproductive technologies are equally troubling. When selecting against severe disease the parents can rely on a widely shared illness experience to escape the dangers that one-sidedness involves. It is concluded that the intuition under discussion, thus explicated and in some ways qualified, makes sense morally. (shrink)

An Indian Court recently awarded 50,000 rupees damages to a couple who gave birth to their fourth daughter. The couple were mistakenly told they were carrying a male fetus. The doctor mistook a section of the umbilical cord for a penis. The husband said: “We are already struggling to raise three children. This was a big sacrifice for us to have a fourth child. We would have had an abortion if we had known it was a girl”. The cost of (...) damages amounted to the dowry they would have to pay at the time of their daughter's marriage.This is a fictional case. But the cases of Nicholas Perruche and Lionel1 are not fictional. According to reports, damages were paid to these children on the basis of what the media has described as a “right not to be born”. Is there a “right not to be born?” Was it right to compensate Nicholas Perruche for being born with congenital rubella and Lionel for being born with Down's syndrome?HARM TO THE CHILDWhat constitutes a right is a complex question. On one interpretation, rights protect interests. This implies that a right not to be born would exist if a child had an interest in not being born. Is it ever in a child's interests not to have been born? If it were, this might imply the child is better off dead than alive, as the Collective against Handiphobia claim. Is it better to be dead than have Down's syndrome?Some people do believe that Down's syndrome constitutes a life not worth living.2 But this view seems false. Children with Down's syndrome can and often do lead happy and worthwhile lives. After all, we do not suggest that other animals have a right not to be born or a life not worth …. (shrink)

This paper considers the problems that arise when death, which is a philosophically difficult concept, is incorporated into healthcare metrics, such as the quality-adjusted life year (QALY). These problems relate closely to the debate over euthanasia and assisted suicide because negative QALY scores can be taken to mean that patients would be ‘better off dead’. There is confusion in the literature about the meaning of 0 QALY, which is supposed to act as an ‘anchor’ for the surveyed preferences on which (...) QALYs are based. In the context of the debate over euthanasia, the QALY assumes an ability to make meaningful comparisons between life-states and death. Not only is this assumption questionable, but the ethical debate is much more broad than the question of whether death is preferable to a state of living. QALYs are derived from preferences about health states, so do not necessarily reflect preferences about events (eg, dying) or actions (eg, killing). This paper presents a new kind of problem for the QALY. As it stands, the QALY provides confused and unreliable information when it reports zero or negative values, and faces further problems when it appears to recommend death. This should preclude its use in the debate over euthanasia and assisted suicide. These problems only apply where the QALY involves or seems to involve a comparison between life-states and death, and are not relevant to the more general discussion of the use of QALYs as a tool for comparing the benefits derived from treatment options. (shrink)

This paper argues against Appel's recent proposal—in this journal—that there is a fundamental human right to sexual pleasure, and that therefore the sexual pleasure of severely disabled people should be publicly funded—by thereby partially legalising prostitution. An alternative is proposed that does not need to pose a new positive human right; does not need public funding; does not need the legalisation of prostitution; and that would offer a better experience to the severely disabled: charitable non-profit organisations (...) whose members would voluntarily and freely provide sexual pleasure to the severely disabled. (shrink)

IntroductionChildren with severe physical disabilities are denied their fundamental right to move, restricting their development, independence, and participation in life. Brain-computer interfaces (BCIs) could enable children with complex physical needs to access power mobility (PM) devices, which could help them move safely and independently. BCIs have been studied for PM control for adults but remain unexamined in children. In this study, we explored the feasibility of BCI-enabled PM control for children with severe physical disabilities, assessing BCI performance, standard PM skills (...) and tolerability of BCI.Materials and methodsPatient-oriented pilot trial. Eight children with quadriplegic cerebral palsy attended two sessions where they used a simple, commercial-grade BCI system to activate a PM trainer device. Performance was assessed through controlled activation trials (holding the PM device still or activating it upon verbal and visual cueing), and basic PM skills (driving time, number of activations, stopping) were assessed through distance trials. Setup and calibration times, headset tolerability, workload, and patient/caregiver experience were also evaluated.ResultsAll participants completed the study with favorable tolerability and no serious adverse events or technological challenges. Average control accuracy was 78.3 ± 12.1%, participants were more reliably able to activate (95.7 ± 11.3%) the device than hold still (62.1 ± 23.7%). Positive trends were observed between performance and prior BCI experience and age. Participants were able to drive the PM device continuously an average of 1.5 meters for 3.0 s. They were able to stop at a target 53.1 ± 23.3% of the time, with significant variability. Participants tolerated the headset well, experienced mild-to-moderate workload and setup/calibration times were found to be practical. Participants were proud of their performance and both participants and families were eager to participate in future power mobility sessions.DiscussionBCI-enabled PM access appears feasible in disabled children based on evaluations of performance, tolerability, workload, and setup/calibration. Performance was comparable to existing pediatric BCI literature and surpasses established cut-off thresholds (70%) of “effective” BCI use. Participants exhibited PM skills that would categorize them as “emerging operational learners.” Continued exploration of BCI-enabled PM for children with severe physical disabilities is justified. (shrink)

The dead donor rule justifies current practice in organ procurement for transplantation and states that organ donors must be dead prior to donation. The majority of organ donors are diagnosed as having suffered brain death and hence are declared dead by neurological criteria. However, a significant amount of unrest in both the philosophical and the medical literature has surfaced since this practice began forty years ago. I argue that, first, declaring death by neurological criteria is both unreliable and unjustified but (...) further, the ethical principles which themselves justify the dead donor rule are better served by abandoning that rule and instead allowing individuals who have suffered severe and irreversible brain damage to become organ donors, even though they are not yet dead and even though the removal of their organs would be the proximal cause of death. (shrink)

Through an exploration of the experience of severe and profound intellectual disability, this essay will attempt to expose the predominant, yet usually obscured, medical anthropology of the child and examine its effects on pediatric bioethics. I will argue that both modern western society and modern western medicine do, actually, have a robust notion of the child, a notion which can find its roots in three influential thinkers: Aristotle, Immanuel Kant and Jean Piaget. Together, these philosophers offer us a compelling vision: (...) the child is primarily a future rational, autonomous adult. While this tacit understanding has arguably widespread effects on such things as our concept of good parenting, of proper schooling, and so on, I will focus on the effect is has on the treatment of children with severe developmental disabilities. When examined in light of this population, the dominant medical anthropology of the child will be shown to be deficient. Instead, I argue for an expansion—indeed, a full reimagining—of our notions of childhood, not only to re-infuse dignity into the lives of children with SDD, but to better represent the goods of childhood, generally. (shrink)

BackgroundDepressive disorders are a common form of psychiatric illness and cause significant disability. Regulation authorities, the medical profession and the public require high safety standards for antidepressants to protect vulnerable psychiatric patients. Ketamine is a dissociative anaesthetic and a derivative of a hallucinogen. Its abuse is a major worldwide public health problem. Ketamine is a scheduled drug and its usage is restricted due to its abuse liability. Recent clinical trials have reported that ketamine use led to rapid antidepressant effects in (...) patients suffering from treatment-resistant depression. However, various flaws in study designs, and possible biased reporting of results, may have influenced those findings. Further analyses of ketamine use are needed to ensure patient safety.DiscussionThe use of ketamine in research and treatment of depressive disorders is controversial. Recently, mental health professionals raised ethical concerns about an ongoing ketamine trial in the UK. Also, a Canadian agency reviewed the existing evidence and did not recommend prescribing ketamine to treat depressive disorders. Findings obtained from tightly controlled research settings cannot be easily translated to clinical practice as substance abuse is commonly comorbid with depressive disorders. An effective antidepressant should reduce severity of depressive symptoms without liability problems. Although the US FDA has not approved the use of ketamine to treat depressive disorders, some psychiatrists offer off-label repeat prescription of ketamine. Prescribing ketamine for treating depressive disorders requires substantial empirical evidence. Clinicians should also consider research findings on ketamine abuse. Depressive disorders can be chronic conditions and the current evidence does not rule out the risk of substance abuse after repeat prescription of ketamine. Off-label ketamine use in treating depressive disorders may breach ethical and moral standards, especially in countries seriously affected by ketamine abuse. This article presents two real-world clinical vignettes which highlight ethical principles and theories, including autonomy, nonmaleficience, fidelity and consequentialism, as related to off-label ketamine use.ConclusionWe urge clinicians to minimise the risk of harming patients by considering the empirical evidence on ketamine properties and attempting all standard antidepressant therapies before considering the off-label use of ketamine. (shrink)

This chapter is about personhood in relation to ethics and to conciliar Christian theology, and how concepts of personhood may discriminate against profoundly cognitively disabled human beings. (By ‘conciliar Christian theology’ I mean the Christian theology that is articulated in, or endorsed by, the first seven ecumenical councils.) -/- I believe we can learn several things about personhood by looking at these two topics together. By examining ancient and medieval concepts of personhood and some modern conceptions of personhood we (...) gain a better grasp of the variety of concepts and what substantive work they were intended to do. By becoming familiar with (part of) the history of concepts of personhood we are better situated to appreciate and judge the theoretical work that these concepts were intended to do and what consequences they have in ethical and theological theorizing. -/- In the first section I tell a select history of moral philosophers theorizing about personhood and discuss these in relation to human beings with profound cognitive disability. I focus on John Locke, Immanuel Kant, and Mary Anne Warren. In the “When Personhood Is Discriminatory” section I argue that concepts of personhood, especially modern concepts of personhood, are typically used in a manner that discriminates against human beings with profound cognitive disabilities. I give two arguments against discriminatory uses of personhood, the Moral Shift Argument and the Argument against Exclusive Personhood. Although the Moral Shift Argument is deductively valid, it probably has little persuasive power over those who do not share the moral belief that profoundly cognitively disabled human beings are equal members of the moral community. However, the Argument against Exclusive Personhood has more argumentative force because it denies the claims that personhood is “self-evident” and that it is “obvious” to everyone. In the following section I survey a select history of concepts of personhood in order to establish the claims that concepts of personhood are not self-evident and are not obvious to everyone. This history of personhood goes back to ancient and medieval Christian theorizing and debating about personhood. It shows that concepts of personhood are not “self-evident” but rather are theoretical posits that are posited in theory construction in order to explain certain putative theological facts. Given that personhood is a theoretical posit and is not “self-evident,” moral philosophers who aim to determine the extent of the moral community on the basis of a supposedly “self-evident” concept of personhood are not justified in doing so. Moreover, given the Argument against Exclusive Personhood, philosophical theologians who wish to articulate models of the Trinity or Incarnation that are consistent with the seven ecumenical councils will find that they, like moral philosophers, are not justified to assume, or to insist on, modern personhood for their models of the Trinity or Incarnation. My overall conclusion, then, is that modern personhood is bad for ethics and unnecessary for conciliar ecumenical Christian theology. (shrink)

This chapter is about personhood in relation to ethics and to conciliar Christian theology, and how concepts of personhood may discriminate against profoundly cognitively disabled human beings. (By ‘conciliar Christian theology’ I mean the Christian theology that is articulated in, or endorsed by, the first seven ecumenical councils.) -/- I believe we can learn several things about personhood by looking at these two topics together. By examining ancient and medieval concepts of personhood and some modern conceptions of personhood we (...) gain a better grasp of the variety of concepts and what substantive work they were intended to do. By becoming familiar with (part of) the history of concepts of personhood we are better situated to appreciate and judge the theoretical work that these concepts were intended to do and what consequences they have in ethical and theological theorizing. -/- In the first section I tell a select history of moral philosophers theorizing about personhood and discuss these in relation to human beings with profound cognitive disability. I focus on John Locke, Immanuel Kant, and Mary Anne Warren. In the “When Personhood Is Discriminatory” section I argue that concepts of personhood, especially modern concepts of personhood, are typically used in a manner that discriminates against human beings with profound cognitive disabilities. I give two arguments against discriminatory uses of personhood, the Moral Shift Argument and the Argument against Exclusive Personhood. Although the Moral Shift Argument is deductively valid, it probably has little persuasive power over those who do not share the moral belief that profoundly cognitively disabled human beings are equal members of the moral community. However, the Argument against Exclusive Personhood has more argumentative force because it denies the claims that personhood is “self-evident” and that it is “obvious” to everyone. In the following section I survey a select history of concepts of personhood in order to establish the claims that concepts of personhood are not self-evident and are not obvious to everyone. This history of personhood goes back to ancient and medieval Christian theorizing and debating about personhood. It shows that concepts of personhood are not “self-evident” but rather are theoretical posits that are posited in theory construction in order to explain certain putative theological facts. Given that personhood is a theoretical posit and is not “self-evident,” moral philosophers who aim to determine the extent of the moral community on the basis of a supposedly “self-evident” concept of personhood are not justified in doing so. Moreover, given the Argument against Exclusive Personhood, philosophical theologians who wish to articulate models of the Trinity or Incarnation that are consistent with the seven ecumenical councils will find that they, like moral philosophers, are not justified to assume, or to insist on, modern personhood for their models of the Trinity or Incarnation. My overall conclusion, then, is that modern personhood is bad for ethics and unnecessary for conciliar ecumenical Christian theology. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:A Medical MishapAngela MooreIn western society we live in an environment where image is valued and sought after. Acquiring Spastic Cerebral Palsy through no fault of one’s own directly challenges and contradicts this. We tend to base our judgments of other people on the way they “look” before we even speak to them or get to know them. For many centuries western society has valued and aspired to having (...) the “perfect” image and body shape. The children’s nursery rhyme “Humpty Dumpty” illustrates that as far back as the 1600’s when something was broken people felt there was a “need” to correct the damage and fix the problem. Maybe “Humpty Dumpty” was an obese person who fell off the wall, maybe he was an intoxicated soldier, maybe it was a name of a large cannon that was sitting on the wall of Colchester (Wright, 2008) which was set up to protect the city. No matter what the situation, the reader is left with a feeling that whenever there was something wrong with Humpty Dumpty, there was a need to correct the error and fix what was broken. Because he was “different” or “not normal” in one way or another he was not valued for his role by members of his local community. The reader is left to form his or her own opinion. Society continues to hold those views to this very day.I am a secondary emergency teacher, have completed a Masters in Special Needs along with having a permanent acquired physical disability, Spastic Cerebral Palsy, affecting my four limbs. This was caused after an initial medical examination was “botched” by an unsupervised intern—the specialist left the theatre during the procedure when I was 14 weeks of age, over forty years ago. Further medical testing was arranged because there was a belief that I may have had hydrocephalus—swelling and excess fluid buildup around my brain causing it to be unnecessarily enlarge for my age. In my family’s case this seems to be an hereditary trait that has passed from my father who has a large head. It’s interesting to note that an obstetrician made a comment to my sister on the size of her toddler’s head. [End Page 213]Since 1970 I have had a range of both positive and negative medical experiences. As a child who wasn’t able to comprehend what and why things were happening I was very frightened and often very upset. As an adult I am able to understand what and why something is going on and I ask questions when needed.“Normal” has always been completing the same things but in a different way to other people while intending to reach the same outcome of “success.” There are many ways to skin a cat and “normal” is a term that has a very broad definition which is dependent upon the individual and the situation at hand. What is “normal” for me will be “different” for someone else. What is “normal” for another person will be “different” for me. It’s the differences between individuals that we come to value later on in life. That I cope in a different manner from others has clearly been aided by being able to make use of information technology—laptop, mobile phones, printers, etc.—along with a feeling that the acquired physical disability that I have is a small part of the overall person that I am. Before I became a person with an acquired disability I was a normal, happy, healthy baby and even now although I will always have a disability I have excellent health and choose not to be defined by having acquired a disability. Unlike some other people I consider myself to be a person who “acquired” a disability instead of being a “disabled” person. Having an acquired physical disability is a small part of the person I am. The manner in which I acquired a severe physical disability is what I have come to value along with the fact that I have done well in many areas of life while having such a severe condition.Unlike people who had disabilities in the 19... (shrink)

It is commonly held that there are both cases in which there is a strong moral reason not to cause the existence of a disabled person and cases in which, although it would be permissible to cause a disabled person to exist, it would be better not to. Yet many disabled people are affronted by the idea that it is sometimes better to prevent people like themselves from existing, precisely because these people would be disabled. One (...) of their grounds for concern, which will be my particular focus in this paper, is that claiming that there are reasons to prevent the existence of disabled people may be expressive of a demeaning and hurtful view of the status of existing disabled people, a view that may encourage discriminatory attitudes towards and treatment of the disabled. I will contend that there can indeed be moral and prudential reasons for preventing the existence of a disabled person. But I will argue that it is less obvious than many people assume what, if anything, the recognition of these reasons expresses about disabled people. And I will contend that, even if the recognition of these reasons does express a perception of disabled people that is potentially hurtful, this effect could be offset by the social expression of a contrary view that I will claim is in fact compatible with and equally valid as the potentially hurtful view. Whether it may be morally objectionable to cause a disabled person to exist depends, in part, on whether the person’s life would be worth living. If it is ever objectionable to cause a disabled person to exist, the objections are surely strongest when the person’s life would be “worth not living” – that is, would have aspects or features that would be bad for the person and that would decisively outweigh those, if any, that would be good. Such cases are, however, quite rare. Indeed, some people question whether there are any disabilities so severe as to cause life to be worth not living. It can be argued that disability involves only the absence of certain abilities and that mere deficits.... (shrink)

Despite some clear positives, the draft text of the Sustainable Development Goals does not fulfill its self-proclaimed purpose of inspiring and guiding a concerted international effort to eradicate severe poverty everywhere in all of its forms. We offer some critical comments on the proposed agreement and suggest 10 ways to embolden the goals and amplify their appeal and moral power. While it may well be true that the world's poor are better off today than their predecessors were decades or centuries (...) ago, to judge whether this is moral progress, we must bring into view what was possible then and what is possible now. We may well find that there have never been so many people avoidably subjected to life-threatening deprivations as there are today, and if this is the case, we should insist that our governments end this oppression immediately through appropriate institutional reforms to be prominently outlined in their post-2015 agenda. (shrink)

The article gives an account of the prelude to an extensive ethical debate in Germany which was sparked off by an invitation to the Australian philosopher Peter Singer to speak at the University of Dortmund. He was to lecture about the right to life of severely handicapped new-born babies. But among special educators this theme provoked violent protests throughout the country; organisations of the disabled and various other groups forced the cancellation of the lecture and discussion with Peter (...) Singer. The kind of dispute which follows in special education is not to be judged without consideration of the methodological background of this young discipline. The events around the ‘Singer affair’ have shown severe methodological deficits, which may or rather must be cured in future. (shrink)

This paper offers a novel account of how complaints of unfairness arise in risky distributive cases. According to a recently proposed view in distributive ethics, the Competing Claims View, an individual has a claim to a benefit when her well-being is at stake, and the strength of this claim is determined by the expected gain to the individual’s well-being, along with how worse off the individual is compared to others. If an individual is at a lower level of (...) well-being than another, their claim to a given benefit is stronger. On this view, the strength of individuals’ claims are a function of their comparative well-being levels. In this paper, I instead argue that competing claims obtain only when a particular relationship obtains between the fates of individuals: that one individual’s gain is at the expense of another. This is a particular complaint that obtains when the fates of individuals are tied together in such a way that inequality that is to the detriment of the person who is worse off is guaranteed to obtain. I demonstrate that this complaint arises only when individuals are exposed to a particular type of risk that allows some to gain only if others lose. As such, I propose that complaints of unfairness occur less frequently than we might think if we take the Competing Claims View to be true. A purely comparative view is unable to account for this unique complaint of unfairness. I argue that this complaint is not only independently plausible, but can serve as a foundation for a more general account of competing claims complaints. (shrink)

Consider the view that coming into existence is bad for us. Can we hold this and yet deny that ceasing to exist would be good for us? I argue that we can. First, many animals have lives such that they would be better off not existing. Second, if persons and babies are distinct things then the same is true of babies. Third, even if persons and babies are not distinct things – rather they are phases that human beings go through (...) – still it is bad for babies that they come into existence. So it was bad for us to come into existence. But most of us now enjoy worthwhile lives. So it would be bad for us, now, to cease to exist. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:How Few Words Can the Shortest Story Have?Amihud GileadOf the best shortest story, we have only tales. According to one of them, Ernest Hemingway was proud of being the author of a story written in merely six words: "For sale: baby shoes, never worn." He considered this as his best story.1 Interviewing Gary Paulsen, Lori Atkins Goodson heard another version:Probably the best writing ever done was by (...) Hemingway and several other writers—I think it was in North Africa. During a drunken discussion, somebody said that they should write the best and shortest story they could write. They all had stories. Hemingway came up with six words: "For sale: Baby shoes. Never used."... Isn't that great? That's all there is. Six words. There's a book, there's a movie, there's a short story, there's a poem—anything you want to do with those six words, you can do it. It's just amazing what you can do with your words.2I greatly prefer the first version to the second despite its musicality or semi-rhythm. The minor colon is better than the major full stop and the capital letters. The whole story is genuinely minor in tone, and its great power rests upon this tone. "Used" is much less evocative and more commercially practical than "worn." "Used" draws the attention to the shoes, whereas "worn" intimately relates to the dead baby. Yes indeed, these six words can initiate a book, a feature movie, and the like; yet, as you will see below, I prefer to think about a whole world centered around, or arising out of, Hemingway's six words. Whether his six-words story is the shortest ever written is quite a different question, which will not be discussed in this paper.A very short story may comprise more than six words, say, seventeen, [End Page 119] such as the following: "The last man on earth sat alone in a room. There was a knock on the door" ("Knock" by Fredric Brown).3Which of these two stories is the better? The shorter one, Hemingway's story in the first version. Why? Not only because there is not a single superfluous word or, even, a letter or punctuation mark; each word, each mark must be there, each is necessary for the story. Hemingway's six words create or initiate a whole story, actually a universe, of sorrow, bereavement, mourning, solitude, silence, untimely death, despair, loss, and tragedy.4 Thus, each word in this story gets the utmost meaningfulness or significance that a word may have. Hemingway's story shows us a tragic world of dread "in a handful of" six words, each of which is very simple. In contrast, although Brown's story bears a lot of tension and it is quite enigmatic (Who is knocking on the door? God, the Devil, an alien? Or is it simply a hallucination?), it conveys much less in seventeen words than do Hemingway's six. Brown's seventeen words do not create or reveal a world, let alone a universe. They create some tension, perhaps a thrill, possibly an enigma but not a world. There is certainly some puzzle that the reader may attempt to solve, but not much more.Even in this respect, Hemingway's story is more enigmatic: What is the purpose of the sale of this baby's shoes? Is there some hope that what cannot be used for the lost baby will be useful for another, living baby? Or is it the stinginess of the dead baby's parents or relatives? Or is it their poverty that forces them to sell even these little shoes? Or is it their wish not to possess these shoes any longer despite their great significance? Regarding this last possibility, it is more suitable to sell them than to throw them away. In any of these possibilities, the shoes have some value. And the enigma under discussion is certainly tragic in any of these possibilities.In contrast, Brown's story suggests merely a puzzle, not a tragic enigma. Such a puzzle may be found even in pulp fiction, not in fine writing, whereas... (shrink)

Book reviewed in this article: Mama Might Be Better Off Dead: The Failure of Health Care in Urban America. By Laurie Kaye Abraham. Not All of Us Are Saints: A Doctor's Journey with the Poor. By David Hilfiker.

In lieu of an abstract, here is a brief excerpt of the content:Life is GoodAnnette ChacosI live in Hervey Bay. I’m a member of several social groups. I have adult children and grandchildren, and many lovely friends. I love to write. Most importantly I love The Lord Jesus Who has been my strength, bringing me through the good times, the not so good times, and the, ‘I’m throwing in the towel’ times.I was first diagnosed with a brain tumour in 1997. (...) Prior to knowing about the tumour and for some time after its removal I had little or no memory of events. The tumour was a left Frontal Meningioma (benign). For some time afterward I was partially [End Page 189] paralyzed. Now there is only some weakness on the right side of my body. Epilepsy too became part of my life. There are different types of seizures, which are rarely, if ever, amusing.Humour is very important. If you can’t laugh at the things that happen life would be a constant tale of woe. I’m very blessed. There are so many people who are much worse off than myself.My storyIn July 1997 my husband went to see if everything was okay because I wasn’t up out of bed yet. I was lying across the bed in a disheveled state. After being cleaned up I was taken to the local hospital. The duty doctor, who hadn’t even seen me, told my son that he didn’t think there was much wrong and to take me home. My sons refused and insisted that the doctor admit me. He did.I was diagnosed with a urinary tract infection. My memories of this are scattered. I learned some time later that I had had a Tonic Clonic seizure (formerly known as “grand mal” seizures which are commonly associated with epilepsy). After I came out of hospital I saw my general practitioner (GP). She sent me for an x–ray, and then to see a Neurosurgeon. An MRI was taken and there was a large tumour in my brain.My memory of this time is poor. I do recall a friend phoning and I told her I was going into hospital to have a brain tumour removed. After fifteen years she is still saying I was so matter of fact about it. I now know that my emotions, like my memory, was at a very low ebb due to the tumour. There was no caring or worrying. If there was, in the next minute, probably second, it was forgotten.Before going into hospital my late husband said to the kids “better take a photograph of your mother in case she dies.” I was told about that comment some time later. What a comfort! Then one day the photo turned up. It was so ugly I tore it up. You’ll note I said the photo was ugly!The operation took place in Canberra hospital, at the end of August. It was to be earlier but they deferred it because an emergency came in. They were going to defer it again, by which time I was mute and non–responsive. My daughter Maria arrived from Melbourne and my daughter Katrina and her husband Kevin came from America with their 3–month–old baby. My son Libe arrived from Sydney. Marcus, my youngest, lived locally, as did my daughter Tania. On hearing the operation was to be deferred again they took action informing hospital staff they were going to the local MP and the A Current Affair television show. So l had the operation—it was much easier to put me under the scalpel than battle the bureaucracy!I have only one film from that MRI. Where the others are I don’t know. According to Dr C, the tumour was very large. But to me, what does size matter—it was no longer there. Most importantly, I survived. The ten days I was in hospital are mostly forgotten. The few people I remember are like snapshots. No one moved, or so it seemed to me.In 2006, the second tumour was removed. It was discovered by the same lovely GP, who found the first one. I was... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:A Brit Milah for Eliezer Herschel ben Yonatan AryehMolly SinderbrandFor observant Jews, the choice to circumcise one's son is not a choice. Technically, it is a contractual obligation; the belief is that male circumcision is part of a holy covenant with God. The word for ritual circumcision, brit milah or bris, literally means "covenant [of circumcision]." Circumcision is a physical symbol of a relationship with the divine. It is (...) the commandment that encompasses all other commandments. It is, thankfully, only required of men (women, they say, are naturally closer to divinity). Circumcision is when a baby boy enters the Jewish community, eight days after birth, and when he gets his name. He becomes somebody. To choose otherwise— and some may choose otherwise—is to choose not to be part of the contract, and by extension, not be part of the Jewish community. And a community is one of the most valuable things a person can have.I was not always an observant Jew, though I was raised in a Jewish household. I essentially fell into observance over a period of 10 years, starting with studying ancient Hebrew with a language-loving rabbi in high school and eventually leading to weekly attendance at an orthodox shul, which I joined shortly after first tasting the vegan cholent at kiddush. It was much easier to make friends in [End Page 91] the Jewish community than in my competitive and mildly misogynist graduate program, and frankly, I liked them better. I received kindness and support when I needed it, and gave it back equally, especially around having children. Having children is difficult under any circumstance, but it is especially difficult in social settings where it is seen as abnormal, strange, or even selfish. The Jewish community normalized having children and created a respite from the judgment of the secular world. When I was pregnant at work, I got comments like "It looks like you're having twins!" and "Are you sure you don't have pre-eclampsia? You look awfully large"; at shul, I got pep talks, encouragement, and the traditional "b'sha'a tova"—"may it happen at a good time."Eventually, after having two kids in a two-bedroom rowhome, my husband and I moved to a mostly-Jewish suburb just outside the city. It is the kind of place where everyone says "Gut Shabbes" (a good Sabbath) to each other on Saturdays, but not one in which all the men wear black hats and study Torah all day (though some do). That is, folks live Jewish lives, but interact with the outside world as well. After a few months, it felt like home.This was the context in which I decided—or rather, did not have to decide—to circumcise my son. It was the natural result of the decision to be part of a community that places value (and even membership) on the ritual of circumcision. I made that decision years earlier and have been continuously reaffirming it since. Every day I wake up is a day I decide to be an observant Jew, and I decide to do so in order to be a member of an observant community. The decision to circumcise was yet another decision to be part of that community, which has given me so much joy, support, and meaning. Why would I deny my son—and myself—that community?In addition, not needing to make any decisions was itself a kind of relief. I have heard of mothers—including my own—off in a room crying, needing comfort, unable to be there for the circumcision. That did not happen for me. Despite a history of rather severe perinatal depression and anxiety, including suicidal ideation less than a week before the event, I was completely fine. Maybe my comfort came from the fact that I already had two children; this was not my first newborn, though it was my first bris. Maybe, after almost two years of COVID, circumcision did not seem like such a big deal. Maybe I was just glad someone else would hold the baby for a while. But I think at least part of it was the happiness that... (shrink)

Don't tell terrible stories—everyone here has enough of their own. Everyone here has a whole bloody sack of terrible stories, and at the bottom of the sack is a hammer the narrator uses to pound you on the skull the instant you dare not believe your ears. Or to pound you when you do believe. Not long ago I saw a tomboyish girl on Khreshchatyk Street demand money of an elderly woman, threatening to bite her and infect her with syphilis. (...) Don't stroll through Volodymyr Hill Park, don't stroll around the botanical garden, and especially don't stroll on Kontraktova Square. Don't stroll anywhere. Don't go to the pavilion with the Golgotha panorama near St. Alexander's Church. Not even the twelve-meter-tall crucified Christ will save you. Don't go outside when it's dark and people turn into shadows a shade darker than dark. Also don't go where you can be seen from far away. Not to imply that people used to be like a bunch of lilies, but now they stink like a cellar of cabbage.The city, which earlier might have had some fun, is now going crazy. It's like a fish in warm water: it doesn't react to anything, swims slowly like it doesn't care if it swallows a hook or not. The excitement and exaltation pass into oppression, just as our necks have sunk into our shoulders, our shoulders into our lumbars, our lumbars into our nether regions. The holiday turns into a funeral, the parades into explosions, depression into mania. Winter passes into summer, people turn into beasts, the hours into ages, and the ages into hours. It's worth simply walking around the city to see a soldier from an unknown army taking a piss near the opera. Farther on is a row of identical old widows selling ball gowns and candelabra. Then there are the aristocrats and manufacturers who throw so much at the prostitutes that they'll soon be richer than their wives.I returned late through the Kyryliv Wood, not heeding all the warnings that I myself have given here. It really is dangerous—the place is famous for it. There's a madhouse nearby, caves where criminals and the sick can hide out. Also, once upon a time, as they say in fairy tales, the great dragon Zmei Gorynich lived here beside the Puchai River. The stench in these places drives away the most committed misanthropes and even one type of philanthrope—that is, perverts. It sounds dumb, but the stench is cleansing. I don't know where it comes from. After the operating theaters and the rooms with amputees, the stench no longer repelled or attracted me; it just was. And this was a great place to think. As I walked, I considered an incident with our patient.The patient, a respectable individual whose name carries too much weight for me to state it directly, one day began to assault people. He nearly strangled a merchant who he believed asked too much for a beaver coat. He likewise wanted to kill his business partner when he didn't say hello loudly enough. But the worst was, he lost all shame of his own nakedness. At first it was the police who took care of it. When our future patient slipped off his pants and undergarments, he was taken to Kyrylivska, which has had means for dealing with such cases dating back to the day when unhinged Cossacks and composers from Kyiv Mohyla Academy were taken there.During the examination we determined that the patient was experiencing a severe breakdown. His wife added that lately, more than once, he had allowed himself strong words in front of the children and often suffered from ennui. Furthermore, she said, the patient had been undergoing treatment for “the French disease” for some years—which was, obviously, where we needed to start.“Syphilis!” Skorsky spat out the matchstick he was chewing on. He was a specialist on the psychological aspects of diseases related to the venereal. “Tertiary syphilis! When poorly treated, over time ‘the French disease’ can destroy the central nervous system. Hence the patient's chicanery. Such theater!”Skorsky and I had not spoken since the incident at Bilinsky's. Meanwhile, something significant had happened to him. The most boring person on earth, Skorsky had simply caught fire. He said hello and kibitzed. I even heard the doctor got drunk alone in his office, then wandered through the forest. Could he be using narcotic substances?“Cocaine!” was the doctor's second proclamation. It was his favorite treatment for the psychological complications of syphilis. Skorsky himself never took what he called “the universal drug”—good for alcoholism and toothaches, neuroses and morphine dependency—though he had read in an article by a respectable Viennese physician, who used cocaine as a panacea, that it was not addictive. That doctor subsequently recanted, but Skorsky paid no attention. He believed the retraction was made under pressure from pharmacologists who had no incentive to cease production of the medications that cocaine might supplant. Their representatives either paid or threatened the Viennese to repent.As the patient was escorted to his room, he assaulted the orderly, Alevtyna. They tried pulling him off her, but, though he released his fingers from her neck, he buried his teeth in her leg. The poor orderly, who had not until then been attacked by a psychotic, nearly died of fear. Later, panic set in over Skorsky's diagnosis. He told her about the consequences of syphilis: grotesque patterns on one's face due to infection of the skin, mucous membranes, cartilage, and bones. He went on about the devastation to the central nervous system, which they had just observed in real life: “The face starts to look like lace some mangy dogs fought over before rolling in the mud.”Alevtyna, who had not yet regained her faculty of speech, straightened up. Ignoring the slavering male orderlies, she bared her leg to get a better look at the wound. She then ran down the hall and out into the garden, where she fell on the ground to rip up grass and small bunches of daisies. Alevtyna ate them along with the soil in their roots.“Minor hysteria. She needs fifteen milligrams of cocaine.”Skorsky took a snuff box out of his pocket and scooped up some white powder with a toothpick made from a goose feather. He gave the order to close Alevtyna's mouth and one of her nostrils, forcing her to snort the medication.We fretted over her so long that evening fell. I decided to walk down, along the ravine, behind the church.It was unlikely there were any large beasts there, but something was rustling. The pits and mounds, ravines, paths, graves of witches whose living sisters flew in the treetops from time to time, the whispers of the forest spirits, the spirits of the nutcases who died in the hospital, the spirits of the monks from the St. Cyril Monastery, Zmei Gorynich and the bogatyrs who wanted to defeat him. The city would be calmer without this forest. I saw the gaps between the trees and went off in the direction of the tram tracks.As I was coming out of the forest, there was a patch of Amanita muscaria that had been trampled into porridge. A bit farther on, the body of Professor Bilinsky lay killed in the blackberry bushes. The way he was lying it looked as though he had not struggled before death. I quickly examined his body but saw nothing out of the ordinary. There were no wounds, no dirt under the fingernails. Animals had not yet smelled the carrion, but swarms of various insects covered him. Oh, why did I have to find the putrid body?The best thing would be to take the tram to his house to inform his relatives. The doors closed, and I noticed my own calm. This death had not evoked any emotions in me other than a feeling of responsibility, the need to tell the family. But also—some alarm at the thought of who the murderer could be. I knew that it was murder.“Your nose is bleeding.” A woman as round as an onion, carrying two baskets full of strawberries, offered me an ironed and starched handkerchief.“Have I dirtied my shirt?”“No, it's as neat as a pin. It's just your nose that's dirty. Wipe it now before you spray blood on my strawberries.”“No one will see the red on red.”“Ah, but it's salty!”“You know why it's not sweet? We'd drink it like syrup.”“Those with Christ in their heart do not talk that way.”“Are your strawberries expensive?”“Why? What?”“I'm checking to see if you have God in your heart.”“Child, if you knew how I have to work for this berry! I have to weed it a hundred times. In a week, the quitch grass grows as high as a horse. And I water it with water I carry from the stream, it kills my arms... ”“How much are the berries?”“They're not for sale. Anyway, soon money won't mean a thing. Soon all money, all these papers made from the skins of sinners on their satanic presses will be annulled. What matters is how we treat each other.”“So if I try your strawberries for free, my ‘thank you’ will be enough?”“Hands off!” she said and thwacked my fingers.I heard loud laughter behind me—same laughter as from the café near the Continental. There was no one sitting near Alina. (This is what fate looks like, remember.) Without asking, I sat next to her, away from the old lady.“Excuse me, but the night before last didn't you, yes, didn't you intrude on my privacy?” She started right away.“I saw it a little differently. Who was that young man with the mustache who paid me for you?”“Are you checking to see if you can flirt?”The tram stopped. People got on and off.“Are you coming back from the hospital?” she asked. “Don't be shocked. My uncle works there. He's told me all about you.”“An uncle by the name of Skorsky?”(Remember: this is what fate looks like.)“Yes. Skorsky's been strange recently—says things that make me wonder if he hasn't lost his mind. Have you noticed anything?”“I don't know.”“You know perfectly well.”“Where are you going?” I tried to change the subject.“I have to send something to my theater friends in Odesa. By the way, they'll be putting on Oedipus Rex soon in Kyiv—in Ukrainian.”“Greek tragedy in Ukrainian! That's a first.”“Exactly. The troupe is rehearsing now in Odesa. The theater where they will perform this fall is being remodeled.”“Wait. Now I remember where I've seen you before—it was at a performance! Vynnychenko's Black Panther and White Bear, at the Bergonier on Fundukleivska.“The same director is doing the Oedipus. He's my friend.”“He's your friend in what sense?”“Again with that tired subject. By the way, I've been thinking about you.”“And I about you.”“That's good. I was thinking not about you, to be precise, but about that elevator you invited me on.”“Who was that man with you?”“Like a broken record! Even if he had been my fiancé, I'm not bought or inherited. I'm not a brooch or a hundred acres of land, and I'm not a house in Kaniv!... Who was with you when you saw Black Panther?“Ah, so.”“Answer!”“That was my mother. She looks very young. She is coming to Kyiv the day after tomorrow. I can introduce you.”“Oh, this is my stop.”I looked out the window and realized that I had long since passed the stop for Bilinsky's.“Can we see each other again?”“We can. But you have only one chance.”Alina the anarchist wrote something on a scrap of paper and handed it to me.Morning, not morning but a thick porridge (I hate porridge). Dew, thick spit, crushed fruits, urine, all on the sparkling cobblestones. The sun, just barely having made its appearance, is already scorching. The human masses scurry and grumble like poorly digested food inside a stomach.I walked diagonally across St. Sofia's Square, then along the perimeter, then one edge, then again diagonally across. I went underground. The basement café of the Continental Hotel was practically empty. I again asked the server to bring the cloth with the embroidered portrait, but I couldn't remember the musician's last name, only that it ended with -sky. The server said that -sky was currently in the southern cities of Yalta and Odesa. I added that Kurbas, the director, Alina's friend, was also in Odesa, rehearsing Oedipus Rex, and that he'd previously put on Black Panther.I was bored, so I walked along Khreshchatyk and then headed down, calling to mind all the Kyiv churches of Podil: there's Birth of Christ, St. Nicholas on the Shore, Intercession, Pyrohoshcha, Holy Presentation, St. Dymytrii Rostovsky, St. Illia's. And also the Epiphany Brotherhood Monastery, Ascension Convent, and St. Katherine's, all these whipped-cream churches on the waffles of our streets. A few of them reminded me of themselves by appearing suddenly out of nowhere.The smells on Kontraktova Plaza where commerce buzzed were like multicolored light bulbs turning on one after another. Here you could catch the aroma of Balabukha jam, which blended with the next smell, English shoe polish at the Raiskys’ shop. Then the crunchy-smelling cabbage from old women standing in a row like herons and spitting out the shells of sunflower seeds. Farther on, the stench of a good-sized rat that crawled under Mrs. Shevchuk's shop where she sells broadcloth. Oh, she can't scream: no, she'll quietly dig that rat out herself so as to not scare off her clients.I bought a paper and two pairs of underwear. I asked two laughing young chambermaids who were secretly puffing in a grape-filled yard for a smoke. I wandered around Podil until evening when I came across a sawmill near the Dnipro that surprisingly smelled pleasantly of mazut fuel oil. The weather was dry, yet in the middle of the road was an enormous puddle, a deep dark black. A forty-year-old woman in a pale pink dress stood near it. The theatricality of it all provoked me to pose her a question,“Ma'am, what should I do?”But she paid me no attention. I shouted,“What should I do?”“What to do, what to do?” she said in Polish. “Jump in the water and swim so far away that you cannot return.”I quickly crossed a section of the forest. The wind brought a mixture of unpleasant air, like a stinky handkerchief held under one's nose. Passing the trees, I saw light in the spaces between them and exited at the hospital.Outside the windows, two orderlies lay in chairs with their heads thrown back. Two others—fools—ran around the yard in different directions, peering out at... something. The lights on the first floor of the hospital were on, and the staff milled about.“You're just in time!” said Ivan, a tall, young orderly.“For what?”“Your patient ran away! We went into his room and he wasn't there.”“What patient?”“The one who bit Alevtyna,” said Danylo, the other orderly, short and middle-aged.“That's Skorsky's patient, not mine.”I had no intention of helping them. This was all history—like my family, Kyiv, and my previous life. I had no intention of thinking about it. I wanted to go to my office, pack up my field surgery kit, and get out. So what? Their psychotic syphilitic ran away—it happened.Of course, that patient could have something to do with Bilinsky's murder. But that was no longer my problem.“What a strange coincidence!” the doctor on duty said. “Comrade doctor, the other one responsible for this patient was just here.”“And where is he now?”“He took off toward the church to look for the patient.”“Didn't the patient escape earlier?”“Don't know.”“How do you not know? You had better call the police, moron, before he kills someone. And get those sleeping orderlies to look for him.”“They can't... ”“Why not? Should I go wake them?”“They're on morphine.”“And you, I can see, have lost your mind. Go, catch your psycho! If it turns out that he killed Bilinsky—and on your watch—you can't imagine what's in store for you.”I adjusted my homburg and set off in the direction of St. Cyril's, that unwelcoming monolithic cube. I glanced around—what if our escaped syphilitic were to jump out of the bushes and bite or strangle me. I looked around because I wasn't sure of my actions, wasn't sure of my choices. Tripping over a clump of clover, I reached the open doors of the church. I couldn't stop myself from going in.The walls and ceiling were covered with frescoes. There was what used to be an angel rolling up the sky on the southern column of the narthex. But also graffiti: people scratched their names on it so as not to be forgotten—their idea of eternity. Prince Volodymyr the Great compared this activity to the desecration of graves. The vandals paid a fine and were beaten with canes. During the raids of Batu Khan, the church was deserted and cracks appeared all over it. Wild martens and feral dogs sought shelter here; insects swarmed under the ceiling with its red mosaics. Birches grew in its midst. Water seeped in the cracks, the water became ice, the ice widened the cracks, more water seeped in the cracks, becoming more ice that further widened the cracks, the wall split and nearly fell over, and then the wall fell over. Yet the angel is still rolling up the sky... When I reached the exit, I heard a rustling behind me. I turned after I stepped outside: in the depths of the church, like a stick in a pot of tar, stood a man with a large bag thrown over his shoulder and a revolver pointed right at me.“Is that you, Doctor?“Don't move!”“What's... Skorsky, what's with you?”“Don't move, I say!”“What are you doing here?”And finally I understood... Skorsky was himself the psycho! (Really, I had known for a while.)“You are the murderer! I knew it! But—why?”“Shut up.”“It was you. You! The stolen cigarettes, the strange behavior, Bilinsky. If I shout, everybody will come running. They've already called the police!”There was heavy breathing behind me. And then a gun rang out.The city is overgrown with new buildings. They encircle everything that was once on the periphery. Kyiv has become an old lady that can no longer restrain herself in the face of pastries. The city climbs farther. It steps over the swamps, turns the old rivers into a series of lakes; the other bodies of water it drives into canals. The grain that falls from the wild wheat is black. When the sun heats it, the grain melts and trickles into the earth. St. Cyril's stands indestructible. No one spackles the small cracks in its walls with either expensive putty or glues, nor with cheap cement and whitewash. One day a small fox appears in the doorway. It runs inside and along the floor of simple gray tiles. The gods watch from the walls, watch and fall into ruin. The fox runs to the iconostasis. Before it is a time-darkened Virgin Mother and Child in oil on sheets of zinc. The fox runs the metal steps that wind up to the second floor. The fox runs past all the vaults, naves, all the frescoes. A buckthorn seed flies in through a broken window. It will be the first. Soon the buckthorn will grow everywhere. A dumb hare will make its nest in the buckthorn bushes and nightingales will settle in the upper branches to sing until the end of the world. The fox runs between the thick rays that penetrate the windows. It catches one of the rays, squints its eyes, and warms itself in the sun.The shot rang out, but I did not fall. I looked around—and on the church threshold was our syphilis patient bearing a rod. His head lay on the rocks by the doorway.“If only he'd been at the stage of nose deformity! Just imagine: a hole instead of a nose plus a hole from the bullet—like an extra pair of eyes!” Skorsky laughed at the corpse.“We need to call the orderlies.”“They heard the shot. They'll run here on their own. You see, Professor Bilinsky believed it would take two or three years to wrap up this patient's case,” Skorsky told me. “But I took care of it much faster!”“Excuse me, but I'm going crazy in this city. I thought that you were Bilinsky's murderer.”“Just so. Why not? I am Bilinsky's murderer.”“Don't tease. You've changed a lot recently, so... ”“Yes, I've started killing people. You might term such a change significant.”“You have the right to irony.”“I am not being ironic.”“Let's call it sarcasm.”“It's the honest-to-God truth.”“And yes, you have the right to mock me.”“Well then, let's be done. To the horses!”“What horses?”“Alina's waiting!”Alina, her uncle Skorsky, a few others I didn't know, and I rode like the wind that ripped off my homburg and carried it back to Kyiv.“There's a fresco in the choir loft at St. Cyril's where Vrubel painted himself and patients from the hospital as the apostles. When I came across it by accident, I really believed they were saints,” Alina said.“I've never been up there. I've only seen the church from below.”“Remember the way back so you can see it sometime.”“The Puchai River used to flow here. You shouldn't trust the landscape,” Skorsky said, reaching for something, perhaps his bag, just when we left the darkness of the trees and saw the endless steppe ahead of us.We rode all night without stopping. Though no one was chasing us. Though we had nowhere to be. We rode like beasts released from a cage. The promises of the horizon turned what we'd left behind into a cage fit for those from whom freedom had been severed, like an anomaly, at birth.The pre-morning sky looked at first like a sack of turnips—filled with something heavy. But with each verst, the sky became lighter. When it was finally light enough to see clearly, we arrived at a knoll at the foot of a stone wall that from a distance had appeared to be a gigantic piece of halva. The exterior ruins of the castle gave no hint of how it was when all was fine here, when people defended themselves successfully from the nomads’ raids. From far off, the wreckage looked like a natural agglomeration of stones—a rocky elevation, no more: a cluster of cliffs. It would rain a few hundred more times, a few hundred more winds from a few hundred directions would blow on this heap, and it would collapse as though nothing had ever been here.A few stalks of wheat grew from one of the rocks. Someone had probably cast a handful of grain here for some birds that forgot to eat it.“Who could this castle belong to?” I asked Skorsky.“I reckon the Swan Princess,” the doctor rejoined, hoping to sound knowledgeable.From behind one of the piles of gray sandstone emerged a young man in a black reptilian coat and a white papakha as lush, bright, and out of place as a dahlia. His name was Artem. The heat was melting our brains, but he was dressed like that, in rooster fashion, which was popular among the otamans. Artem helped Alina dismount her horse and tried to kiss her on the lips, but she offered him a cheek instead.Had she been racing to see this clown?We entered the yard—the ruins had fashioned an internal space that was more or less protected, at least from strangers’ eyes. It turned out that there were even places where it was possible to hide from the rain, and from there the ruins didn't look half bad.In the center of the court was a table, and on it a wooden bucket with pink gladiolas. How romantic! It all looked like it came from outer space. Where on earth, in the middle of the steppe, far from any village or town, did this table, this simple table, come from? And the gladiolas? The steppe hadn't been plowed in so long that any cultivars would have gone wild, degenerated, dried up completely.A campfire crackled nearby—a little preview of what we would soon do to the houses, villages, and cities. Artem the otaman brought over a cezve from the fire and poured the first portion into a small, copper cup for Alina. He also got out a porcelain cup with images of rosy cherubim—but how...?“Who else would like coffee?”Only Skorsky and I responded. The question excited me, even distracted me from the thought of the kiss I had recently witnessed and the Kyiv I had recently left.“It's obvious who the professors here are; cultured people drink coffee. Are you both doctors?”“Uh-huh.”“For wolves of the steppe, like us, doctors are gold, even more precious than gold. Actually, a Hippocrates like you should eat more, because those in your profession will soon be worth your weight in gold. Work on your figures, both of you.”“Who will take pity on the horses that have to carry us?”“We'll find the horses. And very large doctors can be transported on machine-gun carts. We'll need to seat the otamans near you. Only a fool would shoot at a doctor.”“I think we'll find quite enough fools here.”“With your beard, Doctor, you look like Tsar Nicholas II. But even so you won't be shot. You might even be canonized!”“We've only just arrived and you're going on about executions,” Skorsky grumbled and checked to make sure that he still had his bag.“Apologies, apologies, pardonnez-moi. But you are not merely a doctor. A venereologist! Skorsky, you're a specialist! A venereologist is the most important person in wartime. The most valuable! You are the botanists of war. You can't imagine what varieties of flowers grow here, and these beds have long awaited a proper gardener. Or even just a man with a scythe!”“Bite your tongue,” Alina said. “I don't need to listen to this.”“Yes, yes, of course. Excuse me, my r—. ” He almost said “rose.”We rested all day. We went down to a surprisingly close river overgrown with lilies. We rowed the boats left by fishermen. I talked to Skorsky. He took his bag everywhere, refusing even to swim so he wouldn't have to part with it. I asked him what he had in it, but he said it wasn't my damned business.Alina rowed with the otaman to the middle of the river. They were having a loud discussion. She was waving her hands. The current carried their boat downstream slowly and smoothly. What a nuisance, that current!I tried to meet with Alina one-on-one, but she was avoiding me. In the morning I was confused, by lunch I was sad, and after lunch I got angry.In the evening, I lay on the hot grass and drank another cup (I have no idea where they got such good coffee), which had no effect at all on my sleep. I watched the Perseids. Every year, the Earth passes through the tail of Comet Swift-Tuttle. People can see the meteor shower and make a wish. I wished. I counted forty-seven falling stars. All forty-seven of my wishes were for the same thing.Around the campfire, they were sitting, talking. I saw how he tickled her face with a piece of grass and she brushed him off in annoyance. Then they were screaming at each other. Later they again spoke kindly, after which they again quarreled. My joy grew after each tiny mistake that Artem made. I wanted him to show the worst he was capable of.They were screaming at each other, but all I could hear was beautiful opera singing. The stars fell to the sound of their screaming. The stars blessed my joy.Then this happened: Alina kicked the fire, scattered burnt kindling, and burned some of the grass. Artem grabbed her by the arm, but she broke away from him and ran off to the horses.“Go then! I guarantee you'll get to Katerynoslav and return with your tail between your legs.”“I'm going to Huliai-Pole! To Father Makhno!”I jumped up and ran after her.“Where do you think you're going?” Artem shouted.Really—where was I going? I was going after her: to Huliai-Pole, to Katerynoslav, to Rome, to Washington, to Istanbul, to Montevideo... “Go to sleep,” he said. “Come morning, this coquette will be here, right as rain. We've already been through this show. Tomorrow she'll be right here next to my boot!”... No, she won't.In some sort of shape we entered some town. There were some buildings that were some colors, some trees, some streets, some roads, and some signs. Posts, flustered birds’ nests, echoes, colors, shapes—each of some kind. A wedding procession was coming toward us. If you want to make orange, you need to add yellow to red, and then bam—it's black. If you want to salt the soup, shake in a little, and then bam—two handfuls. You want to say a kind word, and then bam—a punch in the face. I was rocked around like a watermelon on a boat and threw up my breakfast straight into the horse's fluffy mane. Sanko found this hilarious, but I said I'd pulverize him. So Sanko sped ahead.No one knew anything about Alina. The daytime sky was like a poorly washed bowl. The sun was a squashed, rotten apricot. The night sky looked like the sole of a boot to me. The moon was a dirty cheap copper coin that had gotten stuck to the sole. Everything seemed spoiled to me, irrelevant, unnecessary. Without her, this journey was a waste of time.“You'd better stay away from everyone,” Artem said. “You'll infect us with your pining, and pining is worse than the clap.”The wedding procession was before us. The young couple, still utter children, walked so calmly it was as if they didn't see us. As if we were made of a light breeze—our bodies, clothes, our horses and their iron shoes—of the lightest gasses. As if we were visible only to ourselves and the coal-black dog that barked, panting and gasping.The wedding was headed straight for us. We were in the middle of the road, and so were they. We approached each other slowly, a wave going toward a wave. Some ten meters before their indifferent faces, I noticed the color of the bride's eyes. And the coral-colored tulips that fell on the road before her. Round goose eggs on meaty stems, the flowers were falling and falling before her. The bride's eyes were almond shaped.“Hey there,” Artem shouted at me. “Wake up!”I came to and saw the whole village, everyone there, not realizing my group had turned left onto a side street away from the procession. The tulips disappeared—where'd they get tulips in the fall? I was sitting alone on my horse in the middle of the road, and the entire wedding procession came to a stop. I moved to the side, and the throng marched on, cutting off our escape route. We rode a few more meters and came across the synagogue.“You know what, you're right,” said the otaman.“Who is?”“Oleksii is the only one here who's right.”“About what?”Artem turned his horse and raced back. Everyone stood still while he ran his horse into the crowd and began firing his revolver. People scattered in all directions. Artem trotted, cackling like an imbecile. The horse kicked an old guy in the mouth. The man fell, spitting out his gold teeth. We rode up to the commotion and formed ranks, but none of us wanted to join the otaman.The bride stopped in the middle of the street. On both sides were buildings and trees, as well as dust, sky, and sun. She stood still, beautiful, as if nothing had happened. Then she adjusted her garland and walked calmly on.“Well, should we get some sugar now?” Artem laughed, looking at the bride, and off he went toward the sugar factory.It was then I noticed that all of the houses had shutters—fuchsia, blue, ocher—and that all the shutters were closed.We flew toward the dirty building, whistling and shouting. If there had been aesthetes among the otamans, they would certainly have razed the abomination in this field after seizing it. They would have spread soil on top and sown buckwheat. Long live buckwheat!, that wonderful crop. Like hunting dogs hot on the trail, we raced to our defenseless victim, with the baying of hundreds of hounds behind us. The field shook beneath us. We became an artist's canvas, evolving from Realism to Romanticism, Romanticism to Expressionism, Expressionism to Suprematism. If we had been painted in black and white, we would have been splotches (until the ink ran, annihilating all remaining patches of white).Two men stood near the gate—unarmed and undressed, in nothing but their undershirts and boots. Our fervor, our kinship with the elements, our entirety, were all for naught.“Jesus Christ! What bores!” Artem exclaimed. “How boring you are!”“Maybe boring for us, but fireworks for them,” Sanko said, dismounting his horse.“The fear of death engenders creativity,” our otaman—a distinguished philosopher of the early twentieth century, that demonic breed—prophesied.He went on, “Excuse me, but with all due respect, we are not going to search you. Just show us right away where the money is. Why are there so few of you? Don't say there's not much money. I want piles and piles of money! If you don't show it to us, we'll print our own on your skin. Believe me, we will.”We entered the factory grounds. There were no workers, only an enormous mountain of sugar beets that looked like a pile of coal from a distance and a pile of dead rats from up close.“So, did you have a good year?” Artem asked a man in an undershirt.“Not really—too dry.”“Nah, that's fine. You wouldn't have been able to gather most of the harvest this year anyway. There's a fire burning across all of Ukraine, all of Russia. The whole world!”While Artem tossed thoughts like well-chewed sunflower seeds into the crowd, the two men quietly stepped aside and then ran fast ahead to the factory's main hall. The gigantic door slammed shut. The gate was locked behind us! The windows were smashed! The factory roared from inside like a cumbersome machine starting up. Bullets whirred through every window.“Bastards! It's a trap! Quick, after me!”Still on horseback, Artem bounded over to a vast window, low to the ground, and smashed it mercilessly. He broke the frame and jumped inside on his horse. I and a few others followed. We broke into their lair, threw open the doors, and let the other warriors inside.Iron vats of hot sugar were steaming, pipes were clattering; machinery groaned.“Parasites!” Artem gritted his teeth. “I'll get you. I'll get you red sons of bitches. Painted whores!”At the word “painted,” his horse fell to the ground. Lying prone, Artem continued fighting, but the red soldiers wouldn't let him stand. Fighting nearby, I rode over to assist but did not know where to aim. Artem got up, ran forward, and brought his sword down on the head of the closest soldier, all the way to the middle of his skull, to the bridge of his nose. It was like butchering a pig. Artem thrust the sword into the buttock of another who was fleeing and cut off his leg at the bend in the knee.“I'll cut off every last one of your asses! Cut off your asses!” Artem bellowed.A half hour later, the dead were lying, the captured sitting, and the victors doing anything they pleased.“Skorsky, are there a lot of casualties?” I asked the doctor, whose hour it was. I hoped not, because I was too tired to help him.“Just a few. The dead are already dead, and the wounded are not ours.”Though Skorsky rarely asked my help, and though I'd become an ordinary soldier, the doctor in me was still present in the most unpleasant attribute—knowledge. Others saw an eviscerated man, pieces of dusty flesh smeared with clay, soil, sand, and straw. I saw a perfectly formed kidney hanging perfectly from the rest of its body like a child's mitten from its coat. You could try this death on for size. Wear it like a sanbenito of the Inquisition.Artem counted the money and then lay on the floor alongside the gigantic sugar mountain in the middle of the room. From time to time, the crystals rustled as they fell.“I didn't think you'd be such a fighter!” the otaman said without turning toward me. “I thought you'd be healing us. You'd keep to the rear and we'd hide you like a girl. But here you are, in the vanguard, like a lion!”“I got excited,” I told him, choosing not to react to the “girl” part.“’Cause Alina said there was no sense counting on you to fight.”“Really?”“Does that sting?”“Why would it? I'm a doctor—not everyone is. It requires a brain. Unlike waving a sword.”“Yeah, yeah. I gave her gladiolas. We were lying in the boat near that castle, doing all manner of things, and she told me all about you. How you met.”“You were lying in that boat talking about me?”“It was the day before you left Kyiv. You agreed to go with the anarchists so quickly!”“Were you surprised? Doctors make fast decisions.”“But you probably had great prospects. Your parents are rich, right?”“And who are your parents?”“Probably all your relatives fled abroad—bourgeois. Why did you stay?”“What the hell's your point?”“Alina, by the way, died a while ago. Probably.”“Don't jinx her.”“Listen here,” he said, staring at the ceiling. “And listen good. If you have designs on her—dead or alive—it's best you castrate yourself now.”“After you.”“If I want to kill somebody, you know, I just do it.”At last he looked at me. I was lying on the floor nearby and looking in his direction, sweaty and relaxed, my appearance complemented by my disdain for his opinion, his authority, his stupid hat. His everything.Artem raised his arm above his head, stuck a finger in the sugar mountain, and licked it. We both got up. Had I anticipated this turn of events, I would have readied a gift for him. Artem held his revolver. Under my hand I found a knife the workers used for gathering beets: it was a deliberately sharpened arc they sank into the swollen brassicas. I jumped up and quickly stepped around the sugar mountain.Artem's bullet hit a pane and broke the glass.“Not man enough for hand-to-hand?”The otaman shot again.“You should've challenged me to a duel, you romantic!”Encrusted with white crystals, I charged Artem from the sugar mountain. We fell in, and the sugar stuck in our hair, mustaches, nostrils, armpits.The gang ran in to get us apart, then backed off because it had nothing to do with them. By now the sugar mountain had burst its banks. Of the once perfect pyramid, a deformed mound remained.Wounded, Artem fell on the sugar mound, turning the white red.I stood before the gang sugar-coated and holding a bloody hook. The old otaman was drawing his last breath. Blood trickled from the corner of Artem's mouth and streamed from the left side of his breast.“What's the commotion?” Old Roman had just come in.“Be quiet,” the boys told him. And a good thing they did.“You killed him? You killed the otaman!”“Shut your mouth,” the boys told him.“You... ”I slugged Roman's stinky herring mouth. How did that son of a bitch find pickled herring in a sugar factory? My fist was now bigger and stronger than ever before, a steel anvil that could split nails and shatter memorial plaques. The unfortunate man's jaw twisted like an upper millstone that had gone off track from the lower.“Let's get out of here and go to Makhno's camp,” I gave my first order.We galloped so fast the grass burned beneath us. The birds and bugs had no time to fly out of the way; hooves trampled the burrows of rodents who didn't dare crawl out of their holes for a long time after. We raced like no one had ever raced before.The steppe, that sly fox, pretended to be an innocent fool. The steppe said, “I'm like Adam: I don't even know my own name.” But its grass harbored the tracks of thousands of armies and the heels of Herodotus, the crunch of Trypillia vessels, and the smell of Scythian hemp, Roman coins, clay figures of wolf people, the chevrons of Denikin's army, glass from the Chekists’ ruby stars, traces of uranium from flying saucers. I threatened it: “Steppe, show me your layers, or I will burn you, plow you under, flood you.” But it just replied: “I'm like Adam: I don't yet know my name.”I lost geography as if it were a silver coin. It fell out of my pocket and rolled through the feather grass that blanketed the steppe in white foam. The open space ahead was so endless that the whole world might as well have been steppe. If people ended up here from somewhere else, they would conclude they were on another planet. The coin fell and became an argentum, became one with the ring on the hand of the princess who had one green eye and one blue, with the twisted candlestick at the monastery on the other side of the steppe, with melted ingots. It broke down into simpler elements, simpler and simpler yet. The horse carried me spreading the seeds of northern plants to the south, just as southern riders had once brought flowers and weeds to the north. And then I turned back. Just as I had no geography, I had no time. Every night I fell asleep with the thought that the next day I would again race. Through all spacelessness, all timelessness. I exchanged one horse for another, got on a train, on a boat, traversed forty versts on foot—in rain that brought the river up to the road, in heat that overturned cattle. The earth I walked on became mine. Mine was the water in the lakes and springs, clean water, dirty water, enlightened water, contaminated with oil, stinking of algae, of fish that died in wells, stinking of the memory of atrocities, water as clean as broken bread. The water did not become Alina.I was doing this for her: I got the basturma out from under my saddle, sodden with the horse's sweat, sliced the throat of a rich man whose daughter I had danced with at a ball, climbed into a vat of beet juice and took a sugar bath, carried out the expropriation of the savings banks, wiped the sweat from my face with my shirt—and the cloth turned red; I didn't know from what. If it was someone else's blood, I didn't care; if it was my own, even less.We mostly came across Reds. We scraped them up like old red paint on a door in order to repaint the boards black. Black looked better. Red is tasteless, but black has style. Healthy men died before us of myocardial rupture like bunnies found in the nest. The ones whose hearts were sewn of steel wire envied the deceased. Seizing estates, banks, distilleries, and prisons reminded us of gathering in the harvest. If you're too lazy to pick an apple, you can shake the tree; some of the fruit gets bruised when it falls. We seized buildings like we were shaking apple trees. No one picked the fruits, we just shook: shook under the beds, under the tables, behind the curtains. No, there was no picking. We just shook until the red juice spurted from the apples.Near the Khorol River with Father Makhno and me in charge, we captured sixteen machine guns and four cannons, as well as five hundred prisoners who immediately came over to our side. The villagers voluntarily gave us bread and cheese, chickens and kvas. People joined us. The front of the machine-gun cart said “You can't run,” and “You won't catch us” at the back. We took factory after factory. Millions of karbovantsi, thousands of poods of sugar, weapons. We smashed the telephone exchanges and captured the telegraphs. We made alliances with some and then with others. Lenin, Wrangel, Frunze, the Germans, Chinese, Australians, Kaiser Wilhelm II, Cleopatra, Maria Theresa Walburga Amalia Christina. We ran the steppe. There were a hundred thousand of us. There were three hundred thousand of them. There were three hundred thousand of us. There were a million of them. There were two million of them. We were all of humanity. We were so many that we were none.The nobles’ estates were long ago forsaken. In the people's deepest trunks lay silks and guipure laces that were once perhaps used only to cover a table. Five steps from the barn in the direction of the pear tree, some silver candlesticks are buried; there's a plaster figure of an angel in the chicken coop, covered with shit and feathers.I was reluctant to be going to my home, but I didn't see any way out. Fate intended me to be a different being from the one I was before.Here my grandfathers and great-grandfathers were born. Here the ones who caused my grandfathers and great-grandfathers to flee had stopped. When we were still far off I noticed that someone was in the house. It was our men—Skorsky had brought them here, about twenty in all. I asked Sanko, whom I had walked with side by side more than once, where the doctor was now. All the men answered that he was around somewhere, but I didn't see him that evening.In 1918, the spirit of my great-grandfather Stepan, along with my mother and uncle, had gotten into a britzka and scrambled off to Paris, to Napoleon, against whom my great-grandfather had fought with the Cossacks, to whom the Russians promised to return self-rule. Following him in the cart went the soul of Grandpa Oleh, who lost a finger when he cut down the old linden near the house; his second finger was blown off by a cannonball near Balaklava, and later his entire hand was cut off by some Turk. Next went the spirit of my father, also Stepan, who did not take part in any war but died of measles at the age of forty. They all got the hell out of here. First, they went to Kyiv, led by my mother, Tamara Makarivna, in order to collect Uncle's family and me, their son. And their son, it turns out, has now come back to rob his own home (I didn't drive my war buddies away, did I?). It's a shame that I didn't know where the bathtub was, or whatever they bathed me in when I was small. It would have been good to walk through the ranks of anarchists with that basin and tell them all to spit into it.Remembering every room, I carried Alina upstairs to my mother's bedchamber. There was no longer furniture or pictures, only bare walls. The bed and mattress remained, but that was enough. Mother hated noise, so she set up her room far away from the running in the halls and the creaks on the stairs. I adjusted the mattress; in a gap, looking like a stalk of wheat, there lay a gold bracelet that she lost in the haste and that the thieves could not find in the mayhem. I tucked it into my pocket.The place could still be saved. It was strong, built under the leadership of my grandfather, who knew how to do it right. He built a sawmill, a gristmill, a dress factory (today it's probably been ransacked, maybe even by our own men).Alina had a complete, displaced break in her right fibula. We needed water first. I went downstairs—the guys were dragging out the piano like an old cow to the slaughter.“What are you doing with that?”“Taking it out.”“Why?”“What's it to you? We want to have fun.”“Can you play?”“We're not your bourgeois lily-handed bitches.”They couldn't play, but they were famous at destruction. “Noise is the music of the new time,” one of the smarter among them might have said. “But noise is the opposite of music. Just as a rose is the opposite of your ugly mugs,” I'd have responded if there was anyone to say it to. I could also have said that this was a Bosendorfer grand piano, that it was very valuable—but do the guys not deserve such a luxury?“Why are you so boring? We're relaxing.”“Then let me play a little first.”“Go ahead, but fast. One-two.”So I played. As before. My fingers ran up and down the black and white keys, which weren't simply keys of these, the simplest, colors. These were the keys that remembered my fingers specifically—achieved by that slovenly German Katerina, our governess. She knew a bundle of languages, could play the piano, and was interested in the latest scientific discoveries. But she had not an ounce of sympathy for anyone who couldn't master anything on the first try. More than once she hit my pinkie against the black key that remembered every one of its four thousand touches. She would pound it on the key and shout, “Si bémol! Si bémol,” and later bang my fingers and translate, “B flach! B flach!”I played. I could not expose myself, so the only thing I could do was believe in miracles. What if these coarse men saw value in this bit of furniture so unintelligible to them? And what if they didn't destroy it, this emblem of my childhood, my land, my air, which I could protect in no other way? My air. My water.“Shchedryk, shchedryk, shchedrivochka,” one of them who recognized the tune began to sing along.“Look at you.” They did not expect music from me, who had until recently been drinking blood like water.They said, “Again, again!”A group of curious men gathered around me. They were ordinary farmers, thieves, and recidivists, peasants and workers, everyone except for Skorsky. They needed this music as they needed baths. The music cleansed them from the inside, perhaps. They had not heard anything besides the whistle of a bullet, the neighing of a horse, or the knocking of a chisel and the whirring of a saw, amputating limbs, for a long time.But it could not go on long. I did not close the piano lid, just stood and went to fetch water for Alina, leaving the unfinished song for later. The well was to the north—that is, at the “Head.” My father once promised to give me a compass if I could learn to identify the ends of the earth by means of the sun. And to make it easier to remember, I gave each one of them a name: the east where the day begins was “Right” (my right hand), the west “Left,” the north “Head,” and the south “Feet.” Back when I could still do whatever I wanted all day long, I would wake in the morning and say: I'm going to the Feet. The mound was at the Feet, Left had the river, Right had the forest. It was only to the Head that I rarely went, because a village was located there. When the villagers saw me, they would speak in whispers and avoid the master's son.... I wiped her brow and her burning, sunken cheeks. I lay down next to her to feel the heat of her skin.When the fire in Alina calmed slightly, I went out into our orchard. My father had once been given a gift from Japan—a tulip tree that blossomed with yellow-green flowers. It had to have grown in the time that I was away. It would have been fatal had it been cut down. I again took the stairs down into the drawing room and came across nobody—they had all disappeared in search of food or were hidden away in their burrows. In the middle of the hall, like an opened rib cage, was the piano, irreparably shattered.B Flach! B Flach!Translation © Ali Kinsella 2022. (shrink)

Over the past several decades, a large number of publications have claimed that there are important similarities between mindfulness and phenomenology, with a particular emphasis on the epoché and phenomenological reduction. We argue that these comparisons trade on a rather superficial and often misleading presentation of phenomenology. The epoché-reduction is treated either as a matter of bracketing our 'theoretical baggage' so as to allow for a full disclosure and precise description of the objects of experience, or as a matter of (...) bracketing our preoccupation with and absorption in worldly affairs so as to allow for a close attention to subjective acts. Both interpretations mischaracterize the proper scope of phenomenology, namely the subject-object (mind-world) correlation. Furthermore, both miss the theoretical, systematic, and (most importantly) philosophical character of phenomenology. We suggest that, in the end, comparisons between phenomenology and Buddhism would be better off focusing on Buddhist philosophy, rather than Buddhist meditative practice. (shrink)

Theories of distributive justice are most severely tested in the area of disability. In this book, Mark Stein argues that utilitarianism performs better than egalitarian theories in this area: whereas egalitarian theories help the disabled either too little or too much, utilitarianism achieves the proper balance by placing resources where they will do the most good. Stein offers what may be the broadest critique of egalitarian theory from a utilitarian perspective. He addresses the work of egalitarian theorists John (...) Rawls, Ronald Dworkin, Amartya Sen, Bruce Ackerman, Martha Nussbaum, Norman Daniels, Philippe Van Parijs, and others. Stein claims that egalitarians are often driven to borrow elements of utilitarianism in order to make their theories at all plausible. The book concludes with an acknowledgment that both utilitarians and egalitarians face problems in the distribution of life-saving medical resources. Stein advocates a version of utilitarianism that would distribute life-saving resources based on life expectancy, not quality of life. Egalitarian theories, he argues, ignore life expectancy and so are again found wanting. _Distributive Justice and Disability _is a powerful and engaging book that helps to reframe the debate between egalitarian and utilitarian thinkers. (shrink)