Saturday, March 28, 2009

Women and men and the many ends of life

by Chris Moses

Jade Goody and Sandra Day O’Connor: I can’t think of a more unlikely juxtaposition of character and personality. One a young English reality TV pop-star made famous by her brash lack of common knowledge and unapologetic lust for media attention, the other a mature, sober jurist and brilliant thinker recently retired from the US Supreme Court.

But in the past week they shared a common cause—bringing attention to the frailty of human health, to the impact of gender on medical treatment, and to the stark crises of end-of-life care we confront as a rapidly expanding, aging world.

Jade Goody did so with her own death—a minor footnote in the American media, but a story of multiple days’ front-page headlines and endless television coverage here in Britain. From crowds of every-day people who mourned her death to the Prime Minister Gordon Brown, the country took a deep breath to reflect on a loss that begged most of all the question of why everyone had been so captivated by this most unlikely of celebrities.

Sandra Day O’Connor spoke before Congress along with other distinguished political and medical leaders, announcing the report of Alzheimer’s Study Group before the Senate Special Committee on Aging. She has played an ever increasingly role promoting awareness of the disease since her husband first received his diagnosis, perhaps most famously sharing the story of how in his mental regression he had found loving companionship with another dementia patient.

Goody’s own illness—she died from cervical cancer—led to a wave of much-needed attention for women’s healthcare. In the weeks after she announced her terminal prognosis, clinics around the UK saw a tremendous surge in the number of patients requesting the basic smear test needed for early detection of the disease. Goody also took the glitz and glamour of her celebrity status to its fighting extreme, selling the media rights to her death-bed wedding and using every possible marketing opportunity to ensure a financially secure future for her two sons. She may have become famous through glaring ignorance (believing Rio de Janeiro to be a person) and crass racial comments (like referring to an Indian woman as the food ‘Poppadom’) but in the end she turned her fierce savvy into a golden parachute billowed by tragedy.

For O’Connor and the Alzheimer’s Study Group, the matter had no individual hero or heroine. To the contrary, their report’s drama came from the enormity of the problem and the unthinkable scale of the costs that lie ahead. ‘Unless we take decisive action now,’ the Group finds, ‘the Alzheimer’s crisis could very easily surpass even the current economic crisis in the damage it inflicts on individuals and our economy.’ For instance, the Federal Government already spends over $100 billion a year on the disease, and Alzheimer’s absorbs over 94 billion hours of uncompensated labor from care-giving family and friends. In forty years that figure could well be ten times higher – a trillion dollars annually. That makes today’s bailouts and stimulus look like chump change, nor does it account for the human suffering and emotional costs born by patients and families alike.

In their profound differences, these two cases demonstrate how appallingly little attention is paid to the way we die. From individual experiences of death to our own cultural practices and social understandings, the subject is taboo. Masked in grief, formality and ritual, deep questions remain unspoken. Rightfully so, the trying emotional confusion that marks all loss deserves whatever space and comfort it might be able to find. But this cannot be an excuse for collective denial of a problem that none of us will ever escape. Far beyond clichés of immortality or ‘man’s fear of death’ our ways for exiting life are as complicated and costly as anything else we do as human beings.

I have written before of my own personal struggles as my mother died from Alzheimer’s, but here I want to raise a number of more direct issues that I hope will raise awareness and provoke debate. As a matter of feminist action, the need to retrieve death from blank-faced stoicism or battle field heroism is just a starting point. Misogynist biases in health care so easily seen around birth control and abortion also pervade the way women receive end of life care and structure male-dominated scientific and medical research cultures. Paranoid debate about childhood sexual education in turn enables lifetimes of ignorance about personal health across genders. And politicization by all sides tends prioritize righteousness, identity and self-expression over understanding, empathy and the admission that much about our minds and bodies remains unknown.

So to close with a few points of consideration:

• Have you ever spoken with your parents about death? How do you tackle the flip side of birds-and-bees?

• What length and level of care can we afford for extensive terminal illness? Who should bear the social, financial and environmental costs of first-world death?

• How do expectations for death and dying differ between and for men and women? Across different sexualities? Between hetero- and same-sex couples and their families?

• Why does ‘health education’ focus so singularly on sexual maturation as life’s primacy and herald reproduction as human fulfillment? How can we better teach and learn about the patterns and cycles of life?

These are big and uneasily answered questions. Start small, combat morbid depression, and recognize that awkward misunderstanding and strained relationships will be infinitely easier now than in the actual moments of death and its aftermath. Between Jade Goody and Sandra Day O’Connor, a vast expanse exists for such urgent contemplation.

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