Thursday, May 8, 2008

Alan Ball Definitely Read this Book

I'm reading Jessica Mitford's book The American Way of Death Revisited. I suspect I will have more to say about it after I've finished, but so far one passage has really stood out to me:

When, in the early eighties, the outbreak of AIDS became a matter of public anxiety, there was panic on the part of funeral directors and embalmers for their own safety. Most mortuaries refused to accept cases where it was believed that the deceased had been exposed to the HIV virus; those who did accept AIDS victims refused to wash, dress, or embalm the victim.
The New York State Funeral Directors Association (NYSFDA), on June 17, 1983, advised members to institute a moratorium on the embalming of AIDS victims. Reaction was quick.
Pete Slocum, a spokesman for the State Department of Health, said that funeral directors had previously been advised to handle the bodies of victims of AIDS as they handle victims of hepatitis B---that is, to wear latex gloves, a procedure that had already been prescribed to prevent spread of any contagious disease and required for health care workers under all circumstances when working with dead bodies. "We have not seen anything that suggests that there needs to be any precautions beyond that."

Threatened with a state bill that would force funeral directors to embalm AIDS victims or risk losing their license, the NYSFDA "lifted it's moratorium on embalming."

This, however, is by no means the ends of the story. It is now cash-in time. The mortuaries that did take AIDS cases began charging healthy "AIDS handling fees," usually $200 to $500. Others used subcontractors to do the embalming, covertly adding the cost by inflating the basic service fee. When the problem began to reach crisis proportions in New York City, the Gay Men's Health Crisis (GMHC), with the help of volunteers, surveyed the city's five-hundred-odd licensed funeral homes to identify their AIDS policies. With that information in hand, it put together a guide recommending only forty-two of the five hundred mortuaries to the thousands of friends and relatives of people with AIDS.

I was born in 1982 and I can remember the first time I became aware of the concept of "gayness" was as a young girl watching a television commercial for safe sex practices. (I didn't know what gay meant [I barely knew what sex meant] and I had to ask my mom for an explanation.) I grew up in an era where children were taught the ways that AIDS could and could not be transmitted. (I remember a particular presentation in high school where a women demonstrated how much of someone else's saliva one would have to drink to get AIDS by drinking 16 oz of water [which even accounting for messy teenage kissing was clearly way too much].)

It's passages like this that remind me how much previous generations had to endure and just how recent some of our progress is. I know that people with AIDS and HIV still face discrimination in both America and internationally. I know that gay men and women still face discrimination (in both America and internationally), but I think that if I fail to acknowledge the progress that has been made then I am failing to honor the people who came before me and fought for that progress.

My first thought upon reading this was, I really can't imagine much worse than losing a family member to a disease (a disease that marked them as a stigmatized person in life) and then being turned away from a funeral home. I suspect there's a lot that has happened (that is happening right at this moment) that I simply "cannot imagine." But I'm going to do my best to try to imagine it, to try to listen and learn; that really is the absolute least that one can do.

Edit: Weirdly enough, this week Dan Savage brought in some HIV-educators to answer someone's question about getting HIV from kissing.


drh said...

Wow. That's really interesting, and something I never suspected (or rather thought about it in that way).

I was in middle school when Ryan White died (and he was from my town so it got a lot of coverage) and I remember very vividly a print PSA of some sort that had a drawing of a very child-like and forlorn stick figure and the caption "I have AIDS. Please hug me--I can't make you sick." It still gets to me now, thinking about it.

Anonymous said...

I remember friends with AIDS who could not get dentists to work on their teeth and who were always put in hospital rooms with other people with AIDS or by themselves. Universal precautions didn't exist yet. You went to the dentist and he or she used his fingers with no gloves and only after HIV hit did dentists start all using precautions. I remember a woman who got kicked out of public homeless shelters for saying she had HIV, banned permanently. Things have changed.