Summary:

The opening of the documentary Fixed: The Science/Fiction of Human Enhancement is meant to startle. A young woman (disabled performance artist Sue Austin) in a motorized wheelchair fitted with transparent plastic fins gracefully glides underwater around seascapes of coral and populations of tropical fish. The scene dislodges expectations about what wheelchairs can do and where they belong. It creates what for many are unlikely associations among disability, wonder, joy, freedom, and beauty. Watching Austin incites questions about what this languid and dreamy scene might have to do with human enhancement, which more predictably brings to mind dazzling mechanical, chemical, or genetic interventions that surpass the ordinariness of a wheelchair and extend human capacities. But this gentle scene opens the way for the film’s conversations about the ethics and meanings of human enhancement that emphasize perspectives by people with disabilities.  

Regan Brashear’s film features interviews with and footage of people living with disabilities as they move in varied ways through their environments—home, workplace, airport, therapy lab, city street. Photographs, news footage, and performances by mixed-ability dance companies complement their stories. We also hear from a transhumanist, academicians, and activists. Together they express a wider range of views about human enhancement than seems possible in an hour-long film.  

Often contrastive views are paired or clustered. For instance, double amputee Hugh Herr, Director of MIT’s Biomechtronics Group, brags that his carbon-fiber and other prosthetic legs will outperform the biological legs of aging peers. His lab develops robotic limbs controlled by biofeedback, and he intends to end disability through mechanical technologies. Gregor Wolbring, a biochemist and bioethics scholar who was born without legs, regards himself as a version of normal and rejects being fixed. “I’m happy the way I am!” he exuberantly proclaims. Rather than strive for normalcy through restorative technology, Wolbring urges acceptance of imperfection.  

Altogether, the interviewees raise questions about how to respond to differences among human bodies: focus on corrections toward achieving a concept of “normal”? accept diversity? extend human potential? The interviews call out underlying assumptions about disability that influence our answers. Do we assume that disability is an aberration that should be erased? A condition located in individual bodies? A condition brought about by unaccommodating social and built environments? Or, as disabled journalist John Hockenberry proposes, “a part of the human story”?

Fixed also asks what the social and ethical consequences of pursuing enhancements might be. Do they equalize opportunity? Do they misplace priorities by channeling attention and resources away from basic health care and ordinary, essential technologies, such as reliable, affordable wheelchairs? Are biological, chemical, and mechanical enhancements indispensible opportunities to extend human experience, as transhumanist James Hughes claims? Do we have an ethical responsibility to enhance, whether to correct or extend?                                                                                               
Hockenberry mentions that we already enhance. Think of eyeglasses, telescopes, hearing aids. People with disabilities, he points out, are typically the first adopters of technologies, such as computer-brain interfaces, that are destined for wider use. Archival film footage of warfare during this discussion reminds us what many of those uses have been. Should we worry, he asks, about using people with disabilities as research subjects? Or should we say with recently paralyzed Fernanda Castelo, who tests an exoskeleton that braces her body as it moves her forward: “Why not”?  

Considering whether we should trust technology to create equality or treat each other equally in the presence of our differences, disability rights attorney Silvia Yee poses the film’s most vital question: “Which is the world you want to live in?” While Fixed gives a fair hearing to disparate answers, the closing image is suggestive. A woman in a motorized wheelchair offers a lift to someone struggling to push a manual chair uphill. She invites him to grasp the back of hers and they roll forward together.

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The idea for her second novel came to Sarah Perry in a flash (Ref. 1) as her husband was telling her about the 1699 sighting of a serpent or dragon in Henham, a village slightly to the northwest of the town of Essex, where Ms.Perry was born in 1979. The late 19th century events of the novel occur primarily in Aldwinter, a fictional fishing village on the Blackwater estuary.  Divided into 4 books (with titles derived from a 1669 pamphlet on the Serpent), each with subdivisions by month, further subdivided into chapters, the story takes place over 11 calendar months, from New Year's Eve to November, 1892. Although the story does not feel complicated and should not be difficult to describe in a synopsis, it is a tribute to the novelist's Dickensian talents  that in fact it is somewhat complex, involving four couples and their various children and friends and their increasingly intricate relationships, all revolving around the palpable feeling in Aldwinter that the famous Essex Serpent has returned, resurfaced, or decided to re-animate all the lives therein. The protagonist is Cora Seaborne,  a recently widowed free-thinker, adept in biology and natural sciences, and mother of an adolescent boy, Francis, who would nowadays probably receive the label "autistic." After the death of her abusive husband from oropharyngeal cancer, Cora becomes emotionally involved with Luke Garrett, the treating surgeon, an idiosyncratic, brilliant man, who has a bosom buddy, George Spencer (simply called "Spencer"), a very wealthy former medical school classmate. With an introduction from her friends Charles and Katherine Ambrose, Cora and Martha - her intimate companion - visit William (often referred to as just "Will") and his wife Stella Ransome in Aldwinter, where Will is the parish minister and father to three children. The eldest is Joanna, a precocious adolescent girl one imagines, alongside a younger Cora, as a younger version of this novel's author, who describes herself as vibrantly curious of all her surroundings while growing up in Essex as a young girl. (Ref. 2)

With the arrival of Cora and Martha in Aldwinter, the narrative begins in earnest with the development of the mounting anxiety over the mysterious events (a missing boat, unexplained drownings) attributed to possibly a resurgent Essex Serpent besetting Aldwinter; Luke's miraculous operation saving a man named Edward Burton from a knife wound to the heart; the increasingly romantic relationship between Cora and Will, to Luke's dismay; Stella's rapidly progressive pulmonary tuberculosis; the disappearance of Naomi Banks, a friend of Joanna; and an attack on Luke by the same man who had knifed Edward Burton. By novel's end, without spoiling the plot, most loose ends have been cauterized, left more neatly dangling or deftly retied.  

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On a stormy night in 1968 a retired, widowed schoolteacher in rural Pennsylvania opens her door to find a young couple, she white, he African American, wrapped in blankets, drenched, and silent.  Letting them in changes her life.  They have escaped together from a nearby mental institution most locals simply call "The School."  The young woman has recently given birth.  When Martha lets them in, her life changes forever.   Supervisors from "the School" show up at the door, the young man escapes, and the young woman, memorably beautiful, is taken back into custody.  The only words she is able to speak out of what we learn has been a years-long silence are "Hide her."  Thus she leaves her newborn baby to be raised by a stranger.  The remaining chapters span more than forty years in the stories of these people, linked by fate and love and the brutalities of an unreformed system that incarcerated, neglected, and not infrequently abused people who were often misdiagnosed.  Homan, the young man who loved Lynnie, the beautiful girl from the institution, was deaf, not retarded.  Lynnie was simply "slow," but a gifted artist who recorded many of the events of her life in drawings she shared only with the one attendant who valued and loved her.  Though her pregnancy resulted from being raped by a staff member, the deaf man longs to protect her and care for the baby.  Years separate them; Homan eventually learns signing; Lynnie's sister befriends her and an exposé results in the closure of the institution.  Over those years Lynnie and Homan witness much cultural change in treatment of people like them who were once systematically excluded.  They find social identities that once would have been entirely unavailable to them.  And eventually, after literal and figurative journeys of discovery, they rediscover each other.   

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“Few hospitals are more deeply embedded in our popular culture” than Bellevue, David Oshinsky writes in the introduction to his new book Bellevue: Three Centuries of Medicine and Mayhem at America's Most Storied Hospital.  What follows, however, is not just an account of the (in)famous hospital, but a history of New York City, of disease and medicine and of America itself. Thus, the pages of Bellevue take us from Revolutionary War to Civil War, from Miasma Theory to Germ Theory, from the Spanish flu epidemic to the AIDS epidemic and from the disaster of 9/11 to the devastation of Hurricane Sandy. Along the way, the reader is introduced to giants of the medical and political world, many of whom were connected intimately to the hospital.  In Oshinsky’s telling, Bellevue is a hospital of firsts. The hospital with the first ambulance corps, first in-hospital medical school, first pathology lab. It is—at the same time—a hospital rooted in tradition. It is startling in reading Bellevue, for example, to realize that halfway through the book, the doctors who are being celebrated as central to the hospital’s longevity still subscribed to Miasma theory and could do little more for their patients than bleed them and give them alcohol.  Bellevue is also—and in Oshinsky’s eyes this seems most important—a hospital of immigrants. It was and is, a hospital where those for whom no one else would care could come, where no one would be turned away. Over the years, this has meant that Bellevue has opened its doors to Irish immigrants who were thought to be causing the Typhus epidemic, to Jews who were thought to be causing tuberculosis outbreaks and to homosexuals who were thought to be causing the AIDS epidemic. The demographic of patients who come to Bellevue has changed drastically throughout its history, but the underlying ethos of the hospital has been unwavering. 

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The Knick was inspired by the Knickerbocker Hospital, founded in Harlem in 1862 to serve the poor. In this 20-part TV series spread out over two seasons, the fictional Knick is somewhere in the lower half of Manhattan around 1900. The time covered during the series is not marked in any distinct way. The characters don’t age much, and although fashion and customs remain static during the series, the scope and significance of advancements that come into play were actually adopted over a longer time than the episodes cover.   

The series builds on some known history. The central character, the chief surgeon Dr. John Thackery, is modeled on a famous surgeon of the time, Dr. William Halsted, in both his surgical adventurism and in his drug addictions. The character Dr. Algernon Edwards, who is an African-American, Harvard-educated, and European-trained surgeon, is based in part on Dr. Louis T. Wright, who became the first African-American surgeon at Harlem Hospital during the first half of the 20th century.  

Storylines of human drama and folly run through the series. Among them are medical cases both ordinary and bizarre, heroic successes and catastrophic failures, loves won and lost, gilded lives and wretched existences, honor and corruption, racism and more racism. Within and around these storylines are the scientific, medical, and industrial advances of the period, as well as the social contexts that form fin de siècle hospital care and medical research in New York City.  

Some of the industrial advances we see adopted by the hospital include electrification, telephone service, and electric-powered ambulances. We see that transitions to these new technologies are not without risks and catastrophes: patients and hospital staff are electrocuted, and when the ambulance batteries died -- a frequent occurrence-- many of the patients they carried died, too.

Medical advances integrated into various episodes include x-rays, electric-powered suction devices, and an inflatable balloon for intrauterine compression to stop bleeding. Thackery is a driven researcher taking on some of the big problems of the day, such as making blood transfusions safe, curing syphilis, and discovering the physiologic mechanisms of drug addiction. We see how he learns at the cost of his patients, or rather his subjects. We also glimpse movements directed at population health. For example, epidemiological methods are applied to find the source of a typhoid outbreak, which drew from the actual case of Mary Mallon (aka, Typhoid Mary). Shown juxtaposed to the advances epidemiology was then promising is the concurrent interest that was rising in eugenics and its broad application to control for unwanted groups. Research ethics and regulations were a long way off.

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This monograph is an important contribution—along with the Health Humanities Reader (2014)—to the burgeoning field of health humanities, a new academic field and the presumed replacement for (and expansion of) medical humanities. While the medical humanities included philosophy, literature, religion, and history, health humanities includes many more disciplines, and the creative arts.
This book is dense with theory and abstraction, but it imaginatively and intelligently promotes the notion that health is a larger and more useful concept than disease, which dominates and limits standard medicine. 

Five authors are listed for the book as a whole; none are attributed specifically to any of the eight chapters.
 
The first chapter “Health Humanities” promotes health humanities as an expansion of medical humanities to include more people (including unpaid caregivers and patients), social and national well-being, and the arts, such as dance, music, and visual art. We need to consider wider ranges of meaning, agency, and patients’ varying life stories. Unpaid caregivers have been neglected, even though “the majority of healthcare as it is practiced, is nonmedical” (p. 13). Medicine per se has been too science-based and too disease oriented, but critical theory and the arts can be “enabler[s] of health and well-being” (p. 19) with many applications to hospitals, clinics, homes, and neighborhoods.

“Anthropology and the Study of Culture” describes a wide range of inquiry, both worldwide and throughout human time, including rituals, conceptions of disease, health, death, and impacts for patients. Some cultures believe in spirit possession. The Chinese have worked with qi (life energy) for millennia. Cultural studies look at popular media, spiritual perspectives, also local and subcultural values.
 
“Applied Literature” discusses pathographies, including mental illness (for example, self-harm); it reviews concepts from Rita Charon and describes how reading groups can promote well-being. Literature expands our understanding of humans well beyond the biomedical gaze. Closely related, “Narrative and Applied Linguistics” reviews notions from Osler, Barthes, Bruner, Propp, Frank, and others. Patients want, beyond technical expertise, healthcare personnel who will help them co-create an enabling narrative. New techniques in linguistics include analysis of a corpus of usage, for example, teen language, thereby gaining approaches to young patients who cut themselves.

At 23 pages, the longest chapter is “Performing Arts and the Aesthetics of Health.” It posits that all arts are uniquely human because they are relational, aesthetic, and temporal (with time in a kairos sense, not just chronos). The arts fit into health practices, which also share the same three qualities. The arts promote coherence, agency, communication, expression, and social wellbeing, traits that are described specifically in music, dance, and drama. Similarly, the next chapter “Visual Art and Transformation,” promotes this particular art, whether elitist or popular, as communicative and transformative. The making of art can be healing. 

“Practice Based Evidence: Delivering Humanities into Healthcare” argues against Evidence Based Practice and its limitations. Instead of Randomized Controlled Trials, smaller, more qualitative studies may be more accurate and useful. Practice Based Evidence (and feminist and postmodern approaches) all create wider and deeper notions of validity.

“Creative Practice as Mutual Recovery” suggests that caregivers, whether professional or lay, also find healing as they deliver care.

In “Concluding Remarks” we read, again, that  “the majority of health care and the generation of health and well-being is non-medical” (p. 153). Medicine and medical humanities are “too narrow a bandwidth,” but health humanities can support all caregivers, various institutions (including schools), self-care, and complementary medicine.   

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The therapeutic benefits of music are well known, but the theory that music might be harmful to our health, unless it is so obviously loud it injures our eardrums, comes as a surprise.  In this volume, historian of medicine James Kennaway traces the idea of pathological music from antiquity to the present.  The book’s introduction considers whether music really can create illness, whether it be of a physiological or a psychological nature.  We learn, for example, of arrhythmias and seizure disorders that are set off by music, not to mention the so-called Stendhal Syndrome, a psychosomatic reaction to great works of art.

The second chapter describes how, during the 18th century, disease was thought to result from excessive stimulation of the nerves, and how that created a theoretical framework for the “medical dangers of music” (p. 23) as being rooted in the nervous system. The example of the glass harmonica is given. This musical instrument, invented by Benjamin Franklin, had its status elevated when Mozart composed two pieces for it.  However, its success became its undoing, as it was feared the tones would “make women faint, send a dog into convulsions, [and] make a sleeping girl wake screaming through a chord of the diminished seventh” (p. 45). Special gloves were devised so that a performer might, by avoiding direct contact with the apparatus, spare his nerves. 

In the following chapter, Kennaway explores how Wagner dominated 19th-century discourse on pathological music in that his work’s eroticism and novel harmonies were thought to produce neurasthenia (a popular catch-all term for an array of anxiety disorders). Listeners were brought to an unhealthy state of ecstasy, and singers, being driven to the abyss, went insane. Women who had recklessly allowed themselves to become “Wagnerized” were punished with a “lack [of] children, or, in the most bearable cases, men” (p. 74).

Moving into the 20th century, the author describes how ideas about pathological music acquired a political connotation.  In Germany, the perceived threat of avant-garde Jewish composers (eg. Schoenberg) to public health culminated in the so-called Degenerate Music exhibition of 1938. And in  the United States, African American-influenced jazz was credited with the power to “change human physiology, damaging the medulla in the brain” (p. 121).

Finally, the book concludes in the present day with music for brainwashing (e.g. a consideration of whether subliminal messages hidden in rock songs could lead to suicide), and the use of painfully loud or abrasive music as sonic weapons in warfare, or for torture.  The author’s verdict is that the notion of music as bad for your health, though emerging in new forms, is more topical than ever.

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“Tithonus” is a dramatic monologue that imagines the once handsome, magnificent Trojan prince to be well-advanced in an unfortunate state brought about by negligent gods and his own lack of foresight.  Exultant over the blessings of his youth, he’d asked Aurora, goddess of the dawn, for eternal life, and she had obtained Zeus’s permission to grant the request.  But Tithonus had failed to ask for eternal youth with his immortality—and neither Aurora nor Zeus had managed to recognize that this feature of the request might be important—so that Tithonus spends eternity growing increasingly decrepit.  In Tennyson’s poem, Tithonus addresses Aurora, hoping he might persuade her to reassign him his mortal status and allow him to die.

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The aim of these reflections on uncertainty in medicine is not to discredit evidence-based medicine or to incite suspicion of the careful and caring processes by which most clinicians arrive at the advice they give.  Rather it is to change conversations among practitioners and between them and their patients in such a way as to raise everyone’s tolerance for the inevitable ambiguities and uncertainties we live with.  If the public were more aware of the basic rules of mathematical probabilities, how statisticians understand the term “significance,” and of how much changes when one new variable is taken into account—when a new medication with multiple possible side-effects is added to the mix, for instance—they might, Hatch argues, be less inclined to insist on specific predictions.  He goes on to suggest that there is something to be gained from the challenge of living without the solid ground of assurances.  When we recognize the need to make decisions with incomplete information (a condition that seems, after all, to be our common lot) we may refocus on the moment we’re in and see its peculiar possibilities. Changing the conversation requires a critical look at medical education which, Hatch observes, “measures a certain type of knowledge essential to medical practice, but it consequently engenders a conception of medicine best described as overly certain . . . .” 

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