Summary:

In Illness as Narrative, Ann Jurecic thoughtfully examines the unruly questions that personal accounts of illness pose to literary studies: What is the role of criticism in responding to literature about suffering?  Does the shared vulnerability of living in a body, which stories of illness intimately expose, justify empathic readings?   What is the place of skepticism in responding to stories of suffering?  Does whether or how we read illness narratives matter?  Jurecic's questions entice discussion at an interesting cultural moment.  The numbers of memoirs and essays about illness—and their inclusion in medical school and other humanities courses—multiplied from the later decades of the 20^th century to the present.   However, their increase, and their potential to encourage empathic readings, coincided with dominant literary theories that advocated vigorously skeptical, error-seeking responses to texts and their authors.  Jurecic reminds us that Paul Ricoeur called such responses "the hermeneutics of suspicion" (3). 

Jurecic's astutely researched, nuanced answers to those questions propose a corrective to the extreme skepticism of "disembodied criticism." Such criticism, she claims, dismisses testimonial writing from "a position of distance and privilege."  But her answers also affirm that intellectually "rigorous" responses to texts are central to the critical humanities (15).  To further her position, she offers attentive readings of accounts of illness by Virginia Woolf, Reynolds Price, and Jean-Dominique Bauby, as well as the theoretical writing of literary and other scholars.  For instance, Jurecic speculates that the condition of a reader's body aligns with his or her responses to texts.  In a chapter called "Theory's Aging Body," she observes that as skeptical scholarly readers age—Stephen Greenblatt, Michel Foucault, Judith Butler—they have turned their attention to "illness, vulnerability, and mortality" (93).  Jurecic also suggests that a function of criticism is to uncover the cultural conditions that memoirs and essays about illness respond to.  Living "at risk" is a recent one.  In stories of living with the risk of experiencing a particular illness in the future, potential patients create narratives of uncertainty to discover the "personal meaning of the impersonal statistics" that medical research now regularly delivers (18). 

 Jurecic also reflects on the ways theorists have understood the possibilities of representing and responding to pain in the varied approaches of philosophers Elaine Scarry, Martha Nussbaum, and Richard Rorty and of anthropologists Jean E. Jackson, Byron Good, and Veena Das.  In an exceptionally comprehensive and nuanced reading of Susan Sontag's theoretical, fictional, and journal writing about suffering, Jurecic uncovers Sontag's inconsistent, yet revelatory positions on the human capacity for responding to representations of pain.  The chapter on Sontag is enriched by Jurecic's reading of Annie Lebovitz's and David Reiff's responses to Sontag's suffering: in Lebovitz's controversial photographs of Sontag's final days (included in A Photographer's Life: 1990-2005) and Reiff's memoir about his mother's illnesses (Swimming in a Sea of Death). 

Illness as Narrative closes with examples of what Jurecic calls reparative writing and reading practices.  In the first instance, ill writers such as Jean-Dominique Bauby (The Diving Bell and the Butterfly) both recreate "a more coherent sense of themselves" and dislodge "fixed ideas and narratives" about illness (109).  In the second instance, Jurecic outlines the limits of two competing readings of Anne Fadiman's The Spirit Catches You and You Fall Down.  One assumes that readers will by nature empathically imagine those who are culturally different from themselves.  The other looks skeptically at the assumption that what medical educators call cultural competence can be acquired by reading a book.  Jurecic suggests that strategies for reading and teaching informed by Janelle S. Taylor, Eve Kosofsky Sedgwick, and Rita Felski can encourage more complex habits of response, such as Taylor's "'empathic curiosity'" (quoted 122).

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Unfortunately,the archive as described and annotated here is no longer available on line. The quotes, summary, and commentary below are nevertheless worth reading. Some images may be found as noted in Miscellaneous below.

Powerful series of self-portrait photographs documenting the artist’s fight against breast cancer, accompanied by a narrative describing her responses to the medical community. In early images, Spence undergoes mammography, lumpectomy, and finally, mastectomy (images 1-3, 5). These "clinical" images provide a temporal narrative of the course of Spence’s "illness," while concomitantly tracing the inter-relationship between the corporal/medical and the artistic body. In so doing, Spence calls into question medical notions of autonomy and ownership, while re-claiming her "right" to the representation of her body-parts.

In later images, Spence rejects Western medicine, in favor of alternative therapies such as acupuncture (image 4) and phototherapy (image 6). As Spence writes: "Women attending hospital with breast cancer often have to subject themselves to the scrutiny of the medical photographers as well as the consultant, medical students and visiting doctors. Once I had opted out of orthodox medicine I decided to keep a record of the changing outward condition of my body. This stopped me disavowing that I have cancer, and helped me to come to terms with something I initially found shocking and abhorrent."

Supporting text by Terry Dennett (Curator, Jo Spence Memorial Archive) at the end of the series of images provides additional excerpts from Spence’s writing, and several useful links to breast cancer awareness sites.

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This short, gripping book describes Taylor's massive stroke, a burst blood vessel in the left side of her brain. Ironically, she was at 37, a neuroanatomist at Harvard, well versed in the anatomy and function of the brain. Her knowledge allowed her to understand from the inside her rapid loss of mental function and, with treatment, her very long (some eight years) recovery to health and, once again, professional activity.

Taylor presents an overview of brain structure and function, emphasizing the different roles of the left and right hemispheres. Since her left hemisphere was damaged and needed to be "rebuilt," in her term (learning to read, to dress herself, to drive a car, to think), she had plenty of time to explore her right brain and understand its wisdom and peace. This is her insight: our culture prizes the admirable but often frantic work of the left brain, putting us in stressed, competitive modes of thinking and acting, often aggressive and argumentative. "My stroke of insight," she writes, "is that at the core of my right hemisphere consciousness is a character that is directly connected to my feeling of deep inner peace" (page 133). Both sides of the brain have their strengths and uses, but she especially enjoys the spiritual and humane aspects of the right brain and, by extension, invites her readers to consider these resources for themselves and for the larger society.

Taylor credits her mother's care for much of the recovery, although it is clear between the lines that Taylor herself worked hard with various therapists (speech, massage, acupuncture). Despite the severity of her injury and the surgery, she appears to have returned to professional work at a high level, fully recovered and very grateful.

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Edited by Victoria Tischler (a psychologist in the Division of Psychiatry at The University of Nottingham), with forewords by Dinesh Bhugra (Professor of Mental Health and Cultural Diversity at King's College London) and Allan D. Peterkin (who founded ARS MEDICA: A Journal of Medicine, The Arts and Humanities), this handbook is intended to provide guidance on medical humanities teaching in the field of mental health.  After a short, familiar introduction to the need for such teaching, Tischler offers concrete guidance on how to begin establishing a medical humanities course.  The subsequent chapters deal with topics, perspectives, and forms of art one might include in such a course.  There is a "brief history of psychiatry through the arts" by Allen Beveridge which is, as we are warned in the title, somewhat cursory, but also well-written and thought-provoking.

Following this are chapters on the use of cinema, poetry, literature, creative writing, drama and theatre, and music in medical humanities teaching for mental health, interspersed with essays on Hans Prinzorn, who collected paintings and pictures by the mentally ill; art psychotherapy; community arts (where, as the authors point out, there is no "interpretative component" but rather a focus on participatory creativity); and the blues.  The authors include psychiatrists, artists, mental health nurses, and counselors/therapists, and the book includes a lovely selection of color plates.

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On July 5, 1998, physics Professor Alan Cromer suffered a heart attack on a plane, and survived after almost an hour of resuscitation efforts, but sustained brain injury from lack of oxygen.  In this chronicle of caregiving, his wife, a psychiatric nurse by training, gives a very personal, detailed account of the radical adaptations his disability required of both of them.  Her story includes reflection on his and her own emotional adjustments to loss of parity in communication and awareness, practical adjustments to physical limitations, and social adjustments to family, friends and professional colleagues.

Arduously, over time, Alan regained some ability to read and speak--indeed, he spoke to groups with Janet about their life together during the peak of his rehabilitation.  But the road to even partial recovery was bumpy, and the writer fully acknowledges the pain, grief, irritation, and deep frustrations that intersected moments of authentic pleasure, discovery, and mutual kindness.  Professor Cromer died September 3, 2005.

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In this collection, which is really a poetry memoir or lengthy poetry sequence, the speaker develops her narrative of a tormented childhood and adolescence, psychological breakdowns, and ongoing struggle in a more "normal" present.  The poems are labeled only by section, of which there are four, and are separated simply by their spacing on the page.  Section 1, "Cuckoo," reveals the origin of the poet's "life as a doll": "After my mother hit the back /of my head with the bat's /sweet spot, light cried / its way out of my body. . . . I was  . . . a doll carved out of a dog's bones . . . my life as a doll / was a life of waiting" (4-5).  Mother was an abusive alcoholic (there seems to be no father ever on the scene).

Section 2, "An Itty Bitty Ditty," concentrates on the speaker's adolescence, which was one of promiscuity and parental neglect.  "Pretty, said Mom / on the night of the prom . . . Pretty, she said as though / I were a ditty, an itty bitty / ditty not even God would pity. / Ditty gone silent.  ditty gone numb" (27).  At age 19 the poet/speaker "took a razor to my wrists"; she was pregnant with an unwanted child at age 20: "Cold walked into me and through me . . . How do you undo someone who's / already undone?" (32-33).

In the third section of the collection,"Tra-la-la," we are whisked ahead to the time when the poet is married and has an 11- year-old son.  At her son's birthday she has a psychotic break and her husband brings her to the hospital.  "When I / stepped out of the car, I sang, /  "tra-la-la," as if I were / Cinderella going to an enchanted ball"  (41).  This section is concerned with her institutionalization and psychotherapy with "Dr. Flesh."  The poet is not enamored of Dr. Flesh, who puts her on display for a group of students "who wanted to be  / just like Dr. Flesh  / who was special, / very very special / unlike me" (43) and who yawns during therapy sessions (44).  The poet also satirizes her diagnostic workup -- a 500 question survey:"Do you like golf? it asked / and when I wrote 'no' / I was diagnosed" (49).  The final section, "O Healing Go Deep," is both a railing and incomprehension about the way the poet's mother treated her, and a plea for sanity: "enough I say of my careening / craziness, of being /a thing in thin wind / running away from Mother" (59).

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As explained in the succinct yet thorough introduction by co-editor Kimberly Myers, an international conference on the topic of "The Patient" was convened at Bucknell University in Pennsylvania in 2006. This collection of essays, which range from personal experience to scholarly literary critique, results from the conference presentations.
 
Of the ten essays, four concern personal or familial experience of illness. These four cover a vast range: literature and disability specialist Kristin Lindgren describes her story of the elusive diagnosis of chronic fatigue syndrome and her coping skills; medical humanities and medical ethics expert Carol Schilling offers a poignant narrative of her experience as a mother of a previously healthy, athletic son who suffers a cervical spine injury from a skiing accident; Gayle Whittier places the story of her daughter's disability amongst a trio of nonfictional and fictional narratives of disability and illness; and renowned poet Tess Gallagher explores her relationship with and caring of her mother who has Alzheimer's disease. These essays, written as they are by women steeped in literature and writing, are not merely chronicles; rather they are infused with commentary on story and the meaning of life as story, journey and relationship.
 
The other six essays are likewise diverse and range from cultural/political studies from the Navajo to the Irish (which includes literary analysis of works by poets Eavan Boland and Nuala Ní Dhomhnaill), to insightful critiques of literary works such as  Hjalmar Soderberg 's Doctor Glas, Lauren Slater's Lying: A Metaphorical Memoir, Brian Clark's Whose Life Is It Anyway?, Alejandros Amenabar's film The Sea Inside (Mar Adentro), and George (Marian Evans) Eliot's Janet's Repentance.

Consistent with the nature of medical humanities, the essays cross boundaries. For example, Whittier weaves her experiences as a mother of a disabled child with reflections on embodiment and literary critique. Gallagher compares the notions of time in poem-making with the necessity to live in the moment when caring for a loved one with Alzheimer's. She notes: "Of the written arts, poetry is most responsive to the moment and so coincides with the condensed time frame of those with Alzheimer's - which oscillates between the distant past and the present moment." (p. 71) Schilling tenderly writes of her family (for an illness strikes not just the patient): "We live the best lives we can, folding each of our stories into one another's." (p. 40) Diedrich explores not just the (at times infuriating) play with deceit in Lying, but also examines the ways in which patients lie and medical language obfuscates illness. She further explores, with great insight, expectations: of literary reviewers, patients and physicians.

 

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Letters to a stranger is a slim volume of poems by Thomas James ((1946 - 1974) posthumously collected and published in 2008 by an admiring reader/ critic, Lucy Brock-Broido. James died by suicide in 1974.

There are 54 poems in all. Forty-one of them were first published in 1973 as James's only published book of verse, Letters to a Stranger. Ms Brock-Broido has collected 13 more from various small magazines. Most have a faint formalistic ring to them with rhymed triplets (a-x-a) predominating.   Preceding the poems is an introduction by Ms Brock-Broido, an introduction that can only be called unusually confessional. (In his characteristically succinct diction, series editor Mark Doty calls it "a love letter, a biography and exorcism all at once".) For subjects, the bulk of the poems have, as we call a type of educational conference in medicine, morbidity and mortality. Indeed, the book might perhaps have been more appropriately entitled "Intimations of morbidity and mortality". Many of the poems are graphic.

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Art. Rage.Us. Is a powerful collection of works by more than 70 artists and writers with breast cancer whose creative impulse was to transform their illness into an artistic form not only as part of their own healing but also for others to learn from their experiences. The expressions are varied, from poetry recording the experience of breast imaging, breast reconstruction, or chemotherapy; to self-portraits after mastectomy; to a collage of conflicting research reports and alternative therapies; to short autobiographical prose pieces.

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The book's chapters derive from a conference entitled "Representing Autism: Writing, Cognition, Disability" held in 2005. Contributors are scholars of English, communication studies, psychology, and other disciplines; some are on the autism spectrum themselves or are parents of autistic people. The book attempts to address what editor Mark Osteen in his introduction cites as a deficit in the field of disability studies, namely that the field has ignored cognitive disabilities. Osteen notes that autism is a spectrum not only among people but within individuals: "any given autistic person's abilities will occupy different locations on [the spectrum] at different times" (7) but a severely autistic person is not merely "different." The editor also addresses the question of self- representation, arguing that "we must strive to speak not for but with those unable or unwilling to communicate through orthodox modes" (7).

The book is divided into four sections: Clinical Constructions, Autistry, Autist Biography, and Popular Representations. Clinical Constructions includes a chapter on Virginia Axline's work with the boy, Dibs (see Dibs: In Search of Self in this database), a child who is now thought to have been autistic; and a chapter on how Bruno Bettelheim convinced the world of science and the public that autism was caused by parental behavior, especially that of mothers ("refrigerator mothers") and that he knew how to cure it. The essayists show how these two psychologists constructed a persona of omnipotence that enabled them to appear to "save" autistic children. Chapter 3 reviews the history of autism as a named condition and contextualizes it.

Chapters in the section on Autistry discuss the mental world of people with autism. Patrick McDonagh (chapter 4) postulates that "the capacity to perceive autism in the 1940s may be connected to the proliferation of modern, and modernist, notions of the self" (102) -- for example, isolation and alienation, and "the removal of referential and conventionally communicative functions from language" (111) that appear in the works of Gertrude Stein, Virginia Woolf, James Joyce. Subsequent chapters apply theories of information processing (chapter 5), metaphor and metonymy (chapter 6), and narrative (chapter 8) to an understanding of the mental world of autistic individuals, and chapter 7 discusses poetry written by autistics.

The section on Autist Biography concerns memoirs written by parents of autistic children. Deborah Cumberland contrasts the memoirs of several mothers with one written by a father (chapter 9) and Sheryl Stevenson (chapter 10) writes about the rhetorical strategies that mothers use "to negotiate contradictions of motherhood that are exacerbated by autism and their own privileged abilities" (199).

The essays in the section, Popular Representations, concern several films and Mark Haddon's novel, The Curious Incident of the Dog in the Night-Time (see annotation). Anthony Baker presents an "autistic formula" used in films and notes that the plots hinge on the way a central character who is not autistic uses the "special powers" of the autistic character, thereby robbing the latter of agency (Chapter 12). Stuart Murray is also critical of how films portray autistic people (Chapter 13). Phil Schwarz, father of a child with Asperger's and an Asperger's adult himself writes about four films ( Thirty-Two Short Films About Glenn Gould,  Smoke Signals, Breaking the Code, The Secret of Roan Inish) he uses to raise the consciousness of autistic peers and to promote self-esteem in the face of society's attitudes toward autistic individuals (Chapter 14).

The authors of chapters 15 and 16 come to different conclusions about the novel, The Curious Incident of the Dog in the Nighttime. Gyasi Burks-Abbott, "a 34 year-old African-American male on the autism spectrum" (303), criticizes the novel for perpetuating stereotypes and for "relegat[ing] the autistic to otherworldliness while establishing a non-autistic author like himself as the necessary medium between autistic and non-autistic reality" (295). James Berger, on the other hand, argues that Haddon uses the protagonist Christopher to "explore questions about language and social relations" (fn1, 286) and observes that Haddon understands human neurological features as a continuum.

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