Disabilities, Illness, and Social Stigma

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Disabilities, Illness, and Social Stigma

Introduction

The appearance of differentness often creates a frame of stigma within which those who are "different" must learn to live. Many individuals throughout the world approach illness and disability with great trepidation. The social stigma associated with disability and illness means that the afflicted must struggle for acceptance. Wanting to belong and fearing the position of the "other"—a social space in which one is misunderstood, devalued, and subjugated—many powerful writers have pushed for acceptance and understanding with personal tales and affecting fiction.

Disabilities

Memoirs of those who have triumphed despite physical challenges are among the most remarkable in literature. Their stories would be astounding for able-bodied people, and their further drive to physically create the text is as awesome as the rarest athletic performance. Both Helen Keller's The Story of My Life (1903) and Christy Brown's My Left Foot (1954) represent the fortitude of the human spirit when physically challenged individuals find the strength to lead exceptional lives despite phenomenal obstacles. Helen Keller's The Story of My Life is the most well known of the famous deaf and blind activist's numerous books and articles. After losing her sight and hearing as a toddler, Helen's inability to communicate left her isolated. Anne Sullivan, a young visually impaired teacher, taught Helen as a child to make hand signs for letters and to spell words: "somehow the mystery of language was revealed to me." After entering the public awareness with her autobiography, Helen Keller spent the next six decades of her life as an activist and advocate for the blind and was one of the most inspiring people of the twentieth century. The autobiography is the basis for the well-known play The Miracle Worker and a movie of the same name.

Irish writer and artist Christy Brown's autobiography My Left Foot (1954) demonstrates a similar triumph over physical disability. Stricken with cerebral palsy, Brown could neither speak nor move any part of his body other than his left foot. Brown's descriptions in the early section of his book provide access to the person inside the disfigured body, leaving the reader eager to know more about his difficult birth, the doctors' dismissiveness, and Brown's family's persistent hope. When, at age five, Brown grabs chalk from his sister's hand with his left foot and traces the letter A, he proves that his intellect is intact and he can communicate with his family and the world.

In addition to memoirs, conventional fiction also helps readers recognize and confront their own prejudices. Virginia Fleming's Be Good to Eddie Lee (1993) is a children's book that helps youngsters understand those who are different and see diversity as a positive aspect of human relations. "God didn't make mistakes, and Eddie Lee was a mistake if there ever was one," muses Christy, a young girl trying to justify her reluctance to be kind to Eddie Lee, the neighborhood boy with Down Syndrome. Setting out with her friend Jim Bud hoping to find frogs' eggs, Christy eventually begins to see the beauty of the woods through Eddie Lee's eyes as he insists on tagging along, ultimately showing a superior knowledge of and sensitivity to nature. Be Good to Eddie Lee helps readers of all ages realize how children like Eddie Lee, though different, can enrich the lives of others, both despite and because of their talents and weaknesses.

Illness

No disease in modern memory has caused the hysterical reaction—the fear, the blame, and the mistreatment—that HIV/AIDS has. The play Angels in America (1992), by Tony Kushner, dramatically explores the racial, sexual, political, religious, and social issues confronting the United States during the Reagan years, the time during which the AIDS epidemic was emerging. Angels in America won the 1993 Pulitzer Prize for Drama for its attention to a wide range of reactions to illness, both by its main characters who have AIDS and by those around them. The play opens with a rabbi saying that in the American "melting pot," nothing melts. The audience quickly meets Prior, an individual with AIDS who questions his own sanity as he is visited by ghosts of his ancestors and selected by angels to be a prophet. While every situation in the play is viewed from at least two sometimes conflicting perspectives, the audience learns that much of the nation's reaction to AIDS and healthcare is highly politicized and prejudiced. Characters struggle to find meaning and while some fail, others break free of the various problems that have been their prisons or find meaning in compassion and commitment to others.

The collection of poems in Tory Dent's HIV, Mon Amour (1999) explores the AIDS epidemic and popular culture from a highly personal perspective. Echoing Marguerite Duras's famous book Hiroshima, Mon Amour, Dent's collection takes the reader on a journey into an honest, angry, and gripping view of living with HIV through an assortment of cultural allusions. Chosen for the 1999 Academy of American Poets James Laughlin Award, HIV, Mon Amour demonstrates one woman's resilience and determination to cling to love and life in the face of devastating illness.

The mentally ill often face the same cruel, irrational, and judgmental reactions as those with any misunderstood disease. Literature about mental illness often provides a firsthand look into a world that most cannot imagine. Anne Sexton's poetry was not only technically excellent, but also meaningful to readers who empathized with her fear and angst. Readers readily believed that her poems echoed her life, reflecting her intermittent institutionalization due to several attempts at suicide in the late 1950s. "Noon Walk On The Asylum Lawn," (1960) anthologized in To Bedlam and Part Way Back, juxtaposes reassuring words of protection from Psalm 23 against her own terrifying observations:

   The grass speaks.
   I hear green chanting all day.
   I will fear no evil, fear no evil
   The blades extend
   and reach my way.

One Flew Over the Cuckoo's Nest (1962), by Ken Kesey, is set among the patients and workers in a mental institution and is narrated by Chief Broom, a catatonic half-Indian everyone believes is deaf and dumb. McMurphy, a con man and patient who has sought institutionalization in order to escape the rigors of a prison work farm, challenges policy and procedure at the institution. Through his constant skirmishes with Miss Ratched, the dictatorial nurse who controls the inmates' daily routines, McMurphy alters the destiny of all the men in the ward. After his final, violent encounter with Ratched, McMurphy disappears and eventually returns, after being lobotomized. Chief Broom, more aware than his peers realize, smothers McMurphy with a pillow to end his misery. Kesey's part-time work in a mental ward as an orderly shaped his belief that mental patients were not necessarily crazy, just more individualized than society was willing to accept.

Susanna Kayson's Girl, Interrupted (1993) addresses the stigma of mental illness. She recounts her two-year stay in a Boston psychiatric hospital and her frustrating experience in the "parallel universe" of madness, one of many places that "exist alongside this world and resemble it, but are not in it." Kayson's memoir, written from a cool, rational, and controlled perspective, asks readers to consider the thin line that separates madness from sanity. Kayson suggests that some forms of mental disturbance are not actually illnesses, but instead labels our society has applied to states of confusion and unhappiness, and that "deviance" and "normalcy" might be considered reflections of socially constructed ideas rather than social truth.

Stigma

William Faulkner's The Sound and the Fury (1929) is an American classic. It depicts the decline of the once-aristocratic Compson family from different points of view. Each perspective relates a different piece of the four-part novel, thus providing the reader with vastly different but connected glimpses into the Compson family's dysfunction and the effect that daughter Caddy's scandalous behavior has on the other family members. The first and most difficult section recounts the novel's earliest events via flashback from the point of view of Benjy Compson, a thirty-three-year-old "idiot." Benjy's brother Quentin narrates the second part of the novel, and while his perceptive understanding of the events of the Compson's family downfall differ from Benjy's, he believes deeply that triumph over the human condition is impossible. Quentin ultimately commits suicide to release himself from the pain of his past. Both brothers are undone by their sister's shame.

John Steinbeck's Of Mice and Men (1937) traces the story of Lennie and George, two displaced migrant farm workers in California during the period of the Great Depression. George, a tough and shrewd farmhand, takes care of Lennie, who is mentally retarded but a strong worker. Although George often bemoans this attachment to Lennie—"I could get along so easy and so nice if I didn't have you on my tail"—readers eventually see a symbiotic relationship between the two men. When Lennie's urge to touch soft things results in a false rape accusation, George and Lennie are forced to leave town and find work at a ranch near Soledad, California. Hoping to save enough money to buy a small farm of their own, Lennie chooses to care for rabbits. The dream collapses when Lennie accidentally kills the wife of Curley, the ranch boss's son. Lennie flees to the river, the safe place where George directed him to go if he ever got into trouble, where George shoots him in an attempt to spare him Curley's vengeance. Lennie continually tries to protect George and finally does so by killing him. Stigma keeps George and Lennie in the shadows, unable to find the understanding that may have protected both George and those he accidentally hurts.

Staying Fat for Sarah Byrnes (1993), by Chris Crutcher, addresses the theme of body image, an ever-present concept in modern society. Eric Calhoune and Sarah Byrnes struggle with themselves in vastly different ways—Eric has been humiliated by his weight his entire life and Sarah suffers through the stigma of horrible facial scars she has had since her father pushed her into a hot stove at the age of three. Unlikely best friends their whole lives, Eric finds Sarah in the hospital in a catatonic state. Eric, now slim from his work on the swim team, visits every day trying to get a response. When Sarah finally answers him, she lets him know she has been aware all along and intends to leave her unbalanced father. With the help of a sympathetic teacher, Eric searches for Sarah's mother and also struggles with overeating, his old pattern, as a response to his successful weight loss that appears to threaten his and Sarah's longstanding friendship. Though both are victims of shame, narrow-mindedness, and abuse, Eric ultimately helps Sarah find her way back into the world.

Another powerful memoir is poet Lucy Grealy's Autobiography of a Face (1994). Diagnosed as a child with cancer of the jawbone, Grealy illuminates the pain, suffering, and confusion she felt at age nine as she endured several surgeries and more than two years of intensive chemotherapy and radiation treatments. Although hospital stays are anxious and painful, being at home is worse. An insider in the hospital corridors, Grealy feels both guilt and shame at home, blaming herself for the arguments over money, family tension, and her mother's depression, although the family dynamic had existed prior to her illness. Once well enough to return to school, Grealy's disfigured face draws attention and taunts, helping ultimately convince her that, perceived as ugly, she will never be loved.

During years of reconstructive surgery, Grealy makes complex rationalizations to give meaning to her suffering, and relies on two passions to keep her grounded and sane: a love of horses and poetry. "The journey back to my face was a long one," she writes. More than just an illness narrative, Grealy's account of disfigurement and catastrophic childhood illness provides moving insights into the nature of suffering, demonstrating the incongruities in how others see us and how we see ourselves.

Conclusion

Mental and physical illness and the stigmas that accompany any kind of social difference have always plagued our social consciousness. While intolerance begets intolerance, the choices of a understanding society can reduce the unnecessary fear and prejudice toward those otherwise marginalized and shunned. Stories by and about those who are stigmatized show us the destructive power of careless, thoughtless prejudices.