Summary:

Spy of the First Person is a short semi-autobiographical narrative about a man with a debilitating condition.  He spends most of his time sitting in a wheelchair on his porch, goes for tests to the Arizona campus of the Mayo Clinic, and has a “handicapped sign hanging from the rearview mirror of his car” (p. 15). The man’s illness is unnamed, but we learn that his motor skills are grossly impaired: “His hands and arms don’t work much.  He uses his legs, his knees, his thighs, to bring his arms and hands to his face in order to be able to eat his cheese and crackers” (ibid).   

The story is told from various, shifting points of view.  At times we are in the head of the protagonist.  At other times, the perspective is that of a nosy neighbor who peers at the sick man through binoculars, hence the book’s title. There is a parallel narrative about an elderly couple and the wife’s gradual decline in health.  The Southwest plays such an important role here one might even say that it too is a character.   

There are also frequent shifts of tense.  It is not always clear whether we are in the past or present.  We alternate between the central character’s fantasies, memories, and observations. The effect of intertwining voices and tenses is reinforced by the brevity of the chapters, many no longer than a paragraph.  The overall impression is that while he may no longer have full control over his body, the man has retained an active (one might say overactive) mind.  

Spy of the First Person concludes as the man’s children take him to a Mexican restaurant.  The vivid description of a meal shared with his loved ones provides a sharp contrast to the inner thoughts that provide the bulk of this book.

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Summary:

Jean Sands' second full-length poetry collection, "Close But Not Touching," was published a few months after her death in October, 2016.  Sands had been working on this volume for more than a year, a process slowed by debilitating illness.  This collection, like her first book, "Gandy Dancing," is autobiographical, raw, plainly written, and powerful.  Both books deal with sexual abuse, marital abuse, dysfunctional family dynamics, divorce, poverty, and a woman's struggle to survive.  And in Sands' case, to write about that survival.

The 47 poems in "Close But Not Touching" are divided into four sections.  The first examines Sands' childhood.  Her mother, born in Hungary, as a child terrified of German soldiers, is failing. In  the book's opening poem, "When Mother Stopped Remembering," Sands introduces her themes of human rights, sexual and physical abuses, and the need to speak out against them. The poem closes with Sands'  mother forgetting words, growing silent, and giving up books.
"In Germany, they emptied the shelves, /  burned the books, the men, the women, the children." (pp 4-5).  Sands' response to the loss of words, of power, is her poetry.

In "Becoming Helen" (pp 7-9), Sands pays tribute to an older woman writer who became a mentor. "Forty years later the keyboard clicks under my fingers, / unseen hands hover above mine." The specter of sexual abuse is raised in "The Peach Farmer's Daughter" (p 15).  Abused by her father, even after his death the daughter can't forget "his liquor breath, his fingers inside." In other poems in this section, Sands addresses aggression ("Pigs" p 16), loss of innocence ("Plum" p 17), humiliation ("The Music Lesson" p 18), and desire ("Danbury Fair" p 19).

The second section takes a loving and yet brutally forthright look at Sands'  four sons and how her marriages and divorces affected them.  She doesn't spare herself--her poor choices--or the sons' fathers.  Especially strong poems include "Night Sounds," "Suicide," "Swimmer," "The Policeman Is Your Friend," and "Father Poem" (pp 26-30).

The poems in section three chronicle the author's divorce from her abusive second husband, specifically, but also her hard-to-shake feelings of entrapment and helplessness in the face first of childhood sexual abuse and then of marital physical abuse.  In "Car Ride" she writes "I can't do this anymore, // I can't do this, // I can't" (pp 38-39).  Forced from her home by police pounding at her door in the dark, she writes "You set me up / ex-husband with greed on your mind. / Money hungry at anybody's expense but your own" (p 40).  Divorce leads to poverty for the author.  "Divorce Settlement," "Working in a Discount Store after the Divorce,"  and "Saving the Universe" will ring true for many who must struggle for subsistence from day to day (pp 46-48).

Section Four brings this collection full circle, offering hope and resolution.  The author has met another man, a good man.  In poems such as "Rain" (p 60) and "As Evening Comes" (p 64) there is a softening, a willingness to open to this new life and new love.  In perhaps the most moving poem in the collection, "At the Vet's Office" (p 65-66), Sands looks back at her marriages ("The first one was a hitter-- / open palms, threatening fists . . . The second one, worse.  A handsome man / with no past.  I should have known / his clamming up was covering up") and compares her past with her present: "I am overwhelmed with gratitude / for the sweet man who will pick up the cat / and pay the bill without a word" (p 66).   This "sweet man" was married to Sands for more than 25 years, became her writing partner, a father to her four sons, and served as her caretaker through many years of her  illness.

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The play has two characters: Ruth and Friend (who is a male doctor).Ruth is an engaging, straight-talking quadriplegic who can zip and dance with her chin-operated wheelchair and takes delight in terrorizing medical staff both physically and verbally. She wants to write poetry and is waiting for a device to make it possible for her to use a computer. She keeps developing bedsores that threaten her life and require long admissions to the hospital before they will heal. She desperately wants to live no matter what happens, as she feels that having no mind would be worse than having no body.Friend is a male doctor with children who is ashamed of having examined her while she was unaware. Burdened with his guilt, he asks to be her “friend.” Ruth is skeptical and runs circles around him, but eventually comes to trust him and believe in his sincerity.She makes him a witness to her advance directive to instigate all heroic measures, as she is afraid of the kindly "ethical" and cost-effective arguments not to treat the disabled. But Ruth dies horribly from sepsis, and Friend is helpless to prevent it. She never obtains the device that would have allowed her to put her poems into printed words.

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Summary:

An artist, Ruth, lives with quadriplegia and manages to drive (and dance) with a special wheelchair that she controls with her chin. She also enjoys terrorizing doctors in the hospital corridors, where she is seen on a regular basis because of frequent bouts of infected bedsores. She has a new computer and is “patiently waiting for” a biomedical engineer to set it up to manage, like her chair, with her chin. She wants to write, to draw, to create. But the wait list is long, technicians scarce, and every candidate deserving.

On one of her admissions, Ruth meets the physician-narrator who is appalled by a medical resident’s lack of empathy in relating her case as if she were not present. Distressed by the encounter, the doctor is all the more disturbed when he notices that Ruth’s birth date is the same as his own.

He tries to make it up to her by withdrawing from her care in order to be her “friend,” one who tries to understand and will defend her strong desire to live despite her disability. Driven by curiosity about her past, her sharp wit, and how she faces each day, the doctor never quite achieves his goal and constantly feels guilty for letting her down as an advocate and a friend, and possibly also for being able-bodied himself.  He never visited her in her group home, and when she comes to hospital in florid sepsis, he is unable to prevent his colleagues from letting nature take its course. His own bout with severe illness, possibly MS—more likely a stroke--resonates with Ruth’s plight. Long after her death, he can imagine the acid remarks that she would make about his foibles.

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Summary:

Stitches is a beautifully crafted graphic novel by award winning writer and illustrator David Small. The memoir chronicles Smalls’ life with chronic illness, focusing on his experience as a child and adolescent with cancer in the setting of an abusive upbringing. We learn through the eyes of a child what being a patient is like, and how, despite all odds Small was able to use art as a way to make a normal life for himself. 

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These poems are not a cancer chronicle, but the experience of living with cancer is threaded through them in a way that illustrates beautifully how awareness of illness may permeate daily life, but is foregrounded and backgrounded, reshaped and revisited in shifting ways as it takes its course.  They encompass moments in family life, moments in the hospital, moments of spiritual longing and awareness of loss.  Together they offer a record of accommodation, acclimation, and complex acceptance.

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In this follow-up to his masterful memoir Do No Harm, British neurosurgeon Henry Marsh must deal with old age and retirement after nearly four decades as a doctor. Stepping down engenders mixed feelings, and he confesses to "longing to retire, to escape all the human misery that I have had to witness for so many years, and yet dreading my departure as well" (p17).

Marsh keeps busy by spending time in Nepal training young doctors and operating. He also makes visits to the Ukraine to perform surgery and teach. He has a fondness for creating things and purchases a fixer upper cottage that he struggles to repair. Marsh recounts previous neurosurgical cases, mostly patients with brain tumors. He remembers the distress at being sued by patients. He reveals his own admission to a psychiatric hospital as a young man. Regrets, both personal and professional, are confessed.

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"Beautician" is a short poem about a beautician visiting a dead friend in the morgue, her sorrow at seeing her friend dead and not looking her best, even dead, and the beautician's attempts to rectify the situation. It is fifteen lines long, in three stanzas of five lines each, in iambic pentameter with a rhyming pattern of abbab. The rhyming is best described as approximate, e.g., "skill" with "beautiful" with "all".

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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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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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