I recently had three experiences that dredged up memories of the early AIDS crisis. I sat on a panel with long-time activist — and genius — Sarah Schulman and watched two documentaries: the excellent Vito, about the life, times and death of noted activist and critic Vito Russo, creator of the book The Celluloid Closet; and a PBS Frontline doc about AIDS in black America.
Like many people of my generation, this is not a trip I enjoy taking. The recalling of fear, grief and anger is still too raw and fresh despite nearly 30 years of living in the ever-evolving plague. This sometimes makes it easy to forget that, while the HIV virus has had so many negative effects on the world, the emergency it created in the queer community also effected some positive change. Certainly our sense of community and caring for one another was enhanced by the battles we fought, while the efforts of ACT UP changed the way the entire Western world now looks at drug testing and effective medical campaigning.
Another change far less discussed is the way AIDS made those of us who were experiencing the crisis firsthand aware of the need for merciful euthanasia in the cases of people with extreme sickness, debility or pain.
I know a number of people who had pacts with lovers/friends/family to take care of business when things got to the point where the sick person’s situation became too much for him or her to bear. One very close friend used a hospital pillow to smother his best friend when that friend’s entreaties to help him die became so desperate there was really no other choice. We were both in our early 30s at the time. Within a year I would be at this same friend’s bedside as his lover held his hand and his family stood watch while he slipped out of this world, unlike the friend he had killed, relatively pain free. We had no death pact, but I often wonder if we had, would I have been able to go through with it?
You have only to look into the eyes of someone who’s actually done this thing to realize how great a toll it takes. It stays with you forever. Mentally healthy people have an innate instinct to preserve life at all costs. To kill someone else, even in the most trying of circumstances, is to also kill some part of one’s self.
And yet there is nothing more soul destroying than to watch someone in physical or mental anguish suffer with no possible hope of relief. And, without going into too much graphic detail, trust me when I say people who dealt with those dying of AIDS in the first decade and a half of the crisis quickly learned there are an endless number of painful, disfiguring and disgusting ways people can die.
This is why I believe in legalized euthanasia for those who have the mental and physical capacity to make this decision for themselves. Like anything else, there is the potential for abuse, particularly with the elderly and disabled, so there must be safeguards in place to protect such people, but that’s no excuse for stopping those who can make a choice from doing what they want with their lives — or deaths.
The state has no business legislating what adults can or cannot do with their bodies, and the religious have no right to impose their morality on anyone else.
As a gay man with no children, I am keenly aware that should I become too incapacitated to care for myself properly later in life there will not be a lot of resources available to help me. The idea of being in a situation where I can’t care for myself, for whatever reason, is one of the worst I can imagine. So I’ve made it clear in my will that no heroic efforts should be made to sustain my life if the situation is too hopeless, and, more importantly, I’ve had a long talk with someone I love and trust about my wishes should I ever end up in an untenable situation.
I hope, if and when that happens, we live in a civilized enough society for a physician to ease me out of my pain in a humane and professional manner because people should not be forced to kill those they love. It’s just not civilized.