|Genre||Essay (12 pp.)|
|Keywords||Acculturation, Body Self-Image, Catastrophe, Children, Chronic Illness/Chronic Disease, Cross-Cultural Issues, Depression, Disability, Humor and Illness/Disability, Illness and the Family, Illness Narrative/Pathography, Patient Experience, Power Relations, Society, Suffering, Suicide, Survival, Women's Health|
In this superbly written essay, Nancy Mairs, a feminist writer who has multiple sclerosis, defines the terms in which she will interact with the world. She will name herself--a cripple--and not be named by others. She will choose a word that represents her reality, and if it makes people "wince," "[p]erhaps I want them to wince. I want them to see me as a tough customer, one to whom the fates/gods/viruses have not been kind, but who can face the brutal truth of her existence squarely. As a cripple, I swagger" (9). She muses on the euphemisms that are used by others, concluding that they describe no one because "[s]ociety is no readier to accept crippledness than to accept death, war, sex, sweat, or wrinkles."
Mairs describes the uncertainty of a (correct) diagnosis early on, the kind of person she was before, and how that has changed and not changed since her illness. She discusses her need for assistance, but balances that by saying that there are many people around her willing to help; she describes her dependence on her family and how lucky she was to have a husband and children before she was taken ill. Nevertheless, there "always is the terror that people are kind to me only because I'm a cripple" (15).
Mairs has many astute comments to make about how disability does not fit well in our youth-oriented, physical-fitness-obsessed culture, and on how social expectations influence whether she adapts or fails to adapt. She also understands what is at stake for the medical professionals who care for her: "I may be frustrated, maddened, depressed by the incurability of my disease, but I am not diminished by it, and they are" (20).
This essay is frequently cited, and often used in medical humanities classrooms. It is written with humor, irony, and with open eyes. Mairs keeps the reader off-balance, just as she is kept off-balance by the twists and turns of an unpredictable disease. She explains how she continues doing many of the things she always did, then writes, " . . . I don't like having MS. I hate it" (12). Proceeding to enumerate further all of the professional and family activities she can enjoy, she then lists many of the activities that she can no longer do, and the depressions that she experiences. "These two elements, the plenty and the privation, are never pure" (13).
When Mairs sees herself in the mirror as she walks, she is horrified by her "abnormal" gait. But in the next sentence, she dismisses even thinking about her appearance, concluding that "[t]he self-loathing I feel is neither physically nor intellectually substantial. What I hate is not me but a disease" (17).
After this essay was published, Mairs continued to write about disability issues from her personal experience, and particularly from her position as a woman with disabilities. She discusses issues she, her family (and others who are disabled) must deal with as her physical condition deteriorates. See, for example, "Opening Doors, Unlocking Hearts" in her collection, Waist High in the World (1996). The essay, "Sex and Death and the Crippled Body: A Meditation" explores the position of disabled women, sexuality, parenthood, medical paternalism, suffering, and assisted suicide (in Disability Studies: Enabling the Humanities; editors Sharon L. Snyder, Brenda Jo Brueggemann, Rosemarie Garland-Thomson; Modern Language Association of America, New York, 2002).
A friend and colleague of Mairs, Janice Dewey, filmed Mairs over a five-year period; the resulting video documentary, entitled Waist High in the World, was released in 2002. Some of the later segments are particularly moving--a discussion by Mairs's husband, George, of how the disease has affected him and his interaction with his wife; Mairs's response to her increasing incapacitation. (The film is available for purchase. See http://www.petertorpey.com/nancy/)
|Publisher||Univ. of Arizona Press|
|Place Published||Tucson & London|
|Annotated by||Aull, Felice|
|Date of Entry||08/04/05|