Kaufman blurs the distinction between life and death in her article “Dementia-Near-Dear and ‘Life Itself,’” claiming dementia to be “a condition both of death-in-life and of life-in-death” (Kaufman, 23). Conditions like dementia serve to dismantle society’s perception of two discrete entities: life and death. But are these two phenomena actually so distinct?
Though there is indeed some sort of difference between life and death, particularly between youth and old age, the distinction between these two categories can be murky. Does one cross over at 40, with a black cake and an “Over the Hill” banner? Or at the first strand of gray hair? Where can we begin to draw the line? Some would argue that the cross over from younger to older via mid-life can be defined by a chronology of medical events, such as menopause in women. In the article “The Politics of Mid-Life and Menopause,” Margaret Lock critiques the medical construction of the female body and aging processes such as menopause as largely informed by a hegemonic social and medical discourse. This becomes even more apparent when she compares perceptions of menopause and aging in the United States with those in Japan. However, in both discourses “the subjective experience of aging is ignored; it is assumed to be irrelevant and inaccurate knowledge in political arenas where reality is above all quantitatively constructed” (357). Thus, what could be the natural progression of life is ultimately dictated and defined by medicine, which continues through the process of dying and death.
If we distinguish dying from death, perhaps we can differentiate between dying as a process and death as a discrete point in time. However, even this distinction proves to be increasingly difficult due to increased technology and varying definitions of death, including the category of “brain death.” Highly contingent on the location of “personhood,” brain death proves to be a controversial concept that varies between cultures. Margaret Lock explores the gray area between life and death in the United States and Japan, claiming “Brain-dead patients remain betwixt and between, both alive and dead, breathing with technological assistance but irreversibly unconscious” (136). She concludes that while brain-dead patients are largely dead to American society, brain-dead patients in Japan live on through their relationships and family ties. “In North America a brain-dead body is biologically alive in the minds of those who work closely with it, but it is no longer a person, whereas in Japan, for the majority, including a good number of physicians, such an entity is both living and remains a person, at least for several days after brain death has been diagnosed” (150).
Not only the status of “brain-dead” as lingering between life and death, but also the determination of the condition seems to be in turmoil. The USA Today article When is someone brain dead? Experts revise guidelines by Jenifer Goodwin presents the conflict over definitions of “brain-dead” and their real life consequences in hospitals. The U.S. Uniform Determination of Death Act defines brain death as occurring “when a person permanently stops breathing, the heart stops beating and "all functions of the entire brain, including the brain stem" cease.” Though there is little debate over this definition, the American Academy of Neurology has issued new guidelines for determining brain death due to large discrepancies over determinations of brain death in America’s top hospitals. Now there is a step-by-step checklist of approximately 25 tests and criteria to rightly and consistently identify brain death.
The equation of brain-death with death itself can largely be attributed to the Cartesian idea that personhood is to be located within the mind. Eric Krakauer explores the realm of Cartesian thinking in regards to medicine and end-of-life issues. Central to the Cartesian approach is the thinking subject, which is thought to be able to “’master’ the chaos of the world” (385). Thus, it logically follows that personhood ends when the thinking, subjective self ceases to master the world with his brain power. This reasoning fits perfectly with concepts of medical mastery, especially the mastery of death. But has medicine actually mastered death? Is this medical definition of death as lack of brain functioning universally accepted in our society?
The answer is no. Varying definitions of death (and where personhood is located) result in controversy around when it is acceptable to officially end a life. One example of a group that rejects the simplistic medical definition of death as “brain death” is a radical disability rights advocacy group called Not Dead Yet. Though the line between life and death is often unclear, the legalized medical killing of people in the gray area (between these categories) is often met with protest from the disability community. The following is a description of the group and their work:
Since 1983, many people with disabilities have opposed the assisted suicide and euthanasia movement. Though often described as compassionate, legalized medical killing is really about a deadly double standard for people with severe disabilities, including both conditions that are labeled terminal and those that are not.
This resistance problematizes the simplistic Cartesian distinction being thinking and non-thinking subjects and resulting existence (or lack thereof) of personhood. Many people living with severe disabilities, or who are in a “vegetative” state, are often deprived of personhood and human rights. These instances raise questions about what constitutes a full person and who should have authority in making decisions about people’s lives that cannot exercise their own autonomy. Also, when doctors deem someone as “brain-dead” are they really dead? Or are they just “disabled” in some capacity? And if they are just “disabled,” shouldn’t they enjoy the right to life like the rest of us?
Goodwin, Jenifer. 2010. “When is someone brain dead? Experts revise guidelines.” USA Today online. http://www.usatoday.com/news/health/2010-06-12-brain-dead_N.htm
Kaufman, Sharon R. 2006. “Dementia-Near-Death and ‘Life Itself.’” In Thinking about Dementia: Culture, Loss, and the Anthropology of Senility. Annette Leibing and Lawrence Cohen, eds. New Brunswick, NJ: Rutgers University Press. Pp. 23-42.
Krakauer, Eric. 2007. “‘To Be Freed from the Informity of (the) Age’: Subjectivity, Life-Sustaining Treatment, and Palliative Medicine.” In Sebjectivity: Ethnographic Investigations. Joao Biehl, Byron Good, and Arthur Kleinman, eds. Berkeley: University of California Press. Pp. 381-397.
Lock, Margaret. 2004. “Living Cadavers and the Calculation of Death.” Body and Society 10(2-3): 135-152.
Lock, Margaret. 1993. “The Politics of Mid-Life and Menopause: Ideologies for the Second Sex in North America and Japan.” In Knowledge, Power, and Practice: The Anthropology of Medicine in Everyday Life. Shirley Lindenbaum and Margaret Lock, eds. Pp. 330-363. Berkeley: University of California Press.