Summary:

Extraordinary Measures, based on events in the life of John Crowley and his family, dramatizes the father's quest to find a cure for Pompe disease, a relatively rare genetic condition that afflicts two of his three children.  The quest brings into play three powerful, often competing human motives:  a father's love for his children, a scientist's pursuit of knowledge and recognition, and a corporation's mandate for profits.  Crowley (Brendan Fraser), an energetic marketing executive, and his wife Aileen (Keri Russell) are told that their children Megan (Meredith Droeger), age eight, and Patrick (Diego Velazquez), age six, have reached the upper limits of their life expectancies.

When Megan, an affectionate, playful, and clear-sighted child, is rushed to the hospital with symptomatic heart and respiratory failure, a young physician empathically encourages the parents to think of their only daughter's immanent death as a "blessing" that will end her suffering.  However, Megan survives.  "So I guess you could say we dodged that blessing," Crowley echoes back to the doctor.  Seeing Megan's will to live reinforces John's wish to make her well, and he abruptly abandons his promising career to find a medical researcher who can reverse Pompe's effects. 

Immersing himself in medical journals and websites, John discovers the intriguing research of Robert Stonehill (Harrison Ford).  A cranky, renegade scientist who thinks to the beat of rock music blasting from a boom box, Stonehill has developed a cutting-edge theory about correcting the enzyme deficiency in the cells of people with Pompe, which gradually weakens skeletal, respiratory, and heart muscles.  However, to produce a treatment derived from his theory, he needs more funding.  John immediately creates a fund to support Pompe research, and he and Stonehill form a mutually exasperating partnership.  They lock horns with each other, venture capitalists, and finally a large genomic research corporation, Zymagen.

Despite the scientist's abrasive ways, Zymagen gives Stonehill a lab and creates employment for Crowley.  However, the two confront the company's culture of rigorous competition among its scientists and its focus on profit margins that ignore the fates of individual children.  When the Zymagen scientists develop a promising therapy, they decide to offer the treatment only to infants, who are most likely to experience benefits.  Disqualifying Crowley's children from the promising trials, this decision, combined with Crowley's obvious conflict of interest, creates the film's final obstacle.  Stonehill and the executives uncharacteristically collaborate to overcome it. 

This ending might seem implausibly neat, but it's consistent with the film's mostly evenhanded approach to the dilemmas of pursuing treatments for orphan diseases.  Toward the end, we witness even Crowley, albeit uncomfortably, reaching beyond his fatherly motives for the Pompe project and turning his argument for bringing the treatment to market from children to profits.  The longer the patients live, John assures the executives, the more treatments Zymagen will sell.  The film leaves space for viewers to ask to what extent Crowley's argument creates a fair compromise or opens an ethical quandary.  In a closing narration, the film moves beyond the fictionalized characters and plot to the real Crowley children and a tempered victory.  Yes, the Pompe treatment stopped the progression of the disease and improved Megan's and Patrick's hearts.  But it has not cured the Crowley children, and almost certainly it won't.   The treatments do, however, show more success when taken at the onset of symptoms.      

View full annotation

Summary:

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.

View full annotation

Summary:

The story centers on Tsotsi (meaning thug), an adolescent in Soweto, the shantytown slum of modern Johannesburg, South Africa.  There Tsotsi (Presley Chweneyagai) leads a loose-knit gang of menacing thugs.  When gang members are first encountered, Butcher reveals his disturbing and sinister nature; Boston (Mothusi Magano), except for his alcoholism, represents a potentially thoughtful but ineffective source of goodness and decency; Aap (Kenneth Nkosi), a simpleton, is devoted to Tsotsi; and Tsotsi seethes with, as yet, inexplicable rage. 

As the story unfolds, a petty crime leads to senseless murder and an old wheelchair-bound man is threatened and cruelly abused.  Finally, Tsotsi, without gang participation, shoots a woman during an auto theft.  When he drives recklessly away, he discovers an infant in the stolen car's backseat.  Rather than killing the baby, his first inclination, he puts it into a paper bag and takes the baby home.  This new relationship--and responsibility becomes the harrowing twist in the story.   

Throughout, short and disturbing flash backs of Tsotsi's childhood reveal unimagined beginnings that have led to the boy's simmering rage and the string of unforgiving actions.  While concerns about vulnerable children within a context of social injustices are foremost in the minds of film viewers, the overwhelming circumstances and complexities frustrate thoughts about realistic interventions. 

View full annotation

Summary:

The film opens on the Coeur d'Alene Indian Reservation -- called "the rez" by its inhabitants -- in 1998. Immediately there is a flashback to July 4, 1976 when the community was celebrating "white man's Independence Day" in drunken abandon. Accidentally Arnold Joseph (Gary Farmer) sets an uncontrollable fire to his neighbor's house, killing the couple who live there. But Joseph catches the baby, Thomas, when he is thrown out of a second story window from the burning house. The rescued Thomas (Evan Adams) is brought up by his grandmother and along side of Victor (Adam Beach), Arnold Joseph's son of about the same age. Joseph keeps on drinking but is in despair about the conflagration and its consequences.

12-year-old Victor watches sullenly while his parents drink until one night he smashes all their beer bottles. This action is a wake-up call for Victor's mother, Arlene (Tantoo Cardinal), who insists that she and Arnold both stop drinking. She chases Arnold out of the house; he leaves, never to return, while Victor watches, sobbing. These elements of the story occur in flashbacks while the 20-year-old Victor and Thomas travel by bus to retrieve whatever they can of Arnold Joseph, who has died outside of Phoenix. The remaining story unfolds in that forsaken spot where Joseph lived in a trailer and befriended Suzy Song, a young Indian woman originally from New York.

View full annotation

Summary:

This edited anthology, which includes poems, essays, short stories, and other creative forms (e.g., a radio diary, a letter to a social service agency), is organized into sections that include Body and Self, Diagnosis and Treatment, Womanhood, Family Life and Caregiving, Professional Life and Illness, and Advocacy. Most works found their way into this collection through a call for submissions, although a few selections are well known, such as Lynne Sharon Schwartz's "So You're Going to Have a New Body !," or an excerpt from Rachel Naomi Remen's Kitchen Table Wisdom (see annotations). In addition, the anthology also includes essays by scholars such as Arthur W. Frank and Rita Charon, who theorize gendered illness narratives.

View full annotation

Summary:

This film documents the quiet devastation of Alzheimer's disease from a daughter's perspective. Using home movie clips and up-close footage of conversations with her 84 year old mother (Doris Hoffmann), a skilled film maker/daughter (Deborah Hoffmann) provides a sustained and poignant documentary of Alzheimer's devastating ability to transform a vibrant and intelligent woman's life.

Interspersed with conversations that reveal her mother's disoriented recollections of the past and the glitches and confusion of daily life routines, home movies and other artifacts provide a contrasting impression of this woman's family and life then and now. Captions and clever title cards are used to organize events and to add gentle humor.

Frances Reid, the camera woman, is mentioned from time to time as someone known to both Deborah and Doris; eventually and without special emphasis, we learn that Frances and Deborah have a lesbian relationship and how Doris adjusted to the couple over the years.

View full annotation

Summary:

Four doomed characters illustrate the downward course of drug initiation and addiction. Aronofsky's innovative portrayal is arrestingly brutal and compelling; many viewers will be disturbed by penetrating and darkly lucid visual effects guiding the descending spiral--from spring to winter, from life and hope to destruction and death.

One character, Sara Goldfarb, played courageously and brilliantly by Ellen Burstyn, becomes addicted to diet pills prescribed by a despicably careless physician. The other characters--her son, Harry (Jared Leto) and his two friends (played by Marlon Wayon and Jennifer Connelly)--are heroin addicts and dealers. In separate ways all move toward the same abyss.

Although graphic and, at times, extremely difficult to watch, the frightening nightmare of addiction should be required viewing for those who might yet succumb and those who think that just saying "no" works. The grisly and unbearably sad storyline and its explicit horror recalls the 1989 film and novel on which it was based, Last Exit to Brooklyn, also written by Hubert Selby, Jr.

View full annotation

Summary:

This unusual story, beautiful and overwhelmingly sad, is set in Sicily on the craggy and barren island of Lampadusa surrounded by the bluest of seas. Everyone in the small fishing and canning village may be related; certainly, this is a place where secrets are not possible. Grazia (Varria Golino) appears to be the loveliest and most loving mother and wife, although her carefree, even childlike behavior is foreboding. The camera loves her and so do viewers who are ravished by her beauty and innocence.

With children positioned on the back of her Vespa, she and they escape to a deserted beach where she swims topless with her children; later, she releases hundreds of howling stray dogs from their inhumane confinement. Not surprisingly, spied-upon actions such as these produce critical response from more conservative neighbors whose norms are less capricious.

When signs of instability and manic depression become apparent, the community joins together to suggest hospitalization to her very supportive and heart-broken husband (Vincenzo Amato). She, like the caged-up dogs, seems to deserve the kind of freedom epitomized by her trips to the beach and will not, we sense, survive medical "imprisonment."

At this juncture, just as her wings are to be clipped, the story’s unexpected turn forces the mourning village to wonder about human frailty and reality. The ending, ultimately unclear and haunting, is a celebration of imaginative madness and ephemeral beauty. Visually stunning.

View full annotation

Summary:

The story is based on an actual 1950's trip by two university friends, Ernesto 'Che' Guevara (Gael Garcia Bernal) and Alberto Granado (Rodrigo De la Serna). Guevara is studying medicine, Granado biochemistry. They plan to travel from Buenos Aires across the Andes Mountains to Chile, Peru, and, then, to Venezuela. Before too many miles their derelict 1939 motorcycle fails, and the two young men continue by whatever means is available. The journey intent is one of adventure--drinking, meeting women, seeing the world.

The young men do discover South America's impressive natural beauty but more strikingly, their eyes and sensibilities are directed to abject poverty and shocking injustices. These blatant inequities, as well as an extended period of time in a leper colony, contribute to the reframing of their original happy-go-lucky adventure and explain, in part, the impulses that eventually would shape Guevara's role in the Cuban Revolution.

View full annotation

Summary:

Oscar, the narrator of this fresh fictional gem, is ten years old. Because his form of leukemia has not responded to treatment, he has been living in a French hospital for a very long time. His parents, who bring him gifts and surely love him, are uncomfortable during their infrequent visits. Dr. Dusseldorf and the nurses are kind, but indirect and distant in their communications with him. Because no one talks to him about his illness or what is likely to happen, he feels isolated, alone, and miserable.

When Mamie-Rose, a very elderly hospital "pink lady" (hospital volunteer) with an exotic past, enters Oscar's life, she brings honesty, warmth, and comfort to the lost child known as Bald Egg. Guided by this incredible person--a blunt-spoken, irreverent woman who touches him, kisses him, and tells him wondrous stories of her wrestling feats--the boy grows stronger. Who wouldn't under the influence of the Strangler of Languedoc?

Of course Oscar is going to die. In addition to her generous companionship and her introductions of him to other children in the hospital, Mamie-Rose suggests letters to God as a way of feeling less lonely. "So God, on the occasion of this first letter I've shown you a little of what my life in the hospital is like here, where they now see me as an obstacle to medicine, and I'd like to ask you for clarification on one point: Am I going to get better? Just answer yes or no. It's not very complicated. Yes or no. All you have to do is cross out the wrong answer. More tomorrow, kisses. P.S. I don't have your address: what do I do" (65).

With Mamie-Rose treating him like a real kid, "move your but . . . we're not ambling along like snails" and Oscar scripting very candid letters to God, the first-person story about loneliness, love, and compassion is presented with spirited imagination. Oscar's story is quite extraordinary--and unforgettable.

View full annotation