In 1992, when Jonathan and I first tested positive, neither of us had “real” jobs. We were piecing together our existences through meager writing assignments, General Assistance and a spartan lifestyle. We were staying on the edge of San Francisco’s Tenderloin district in a room somewhere between studio apartment and residential hotel: Hot plate to cook on, bathroom down the hall.
HIV brought not only newly perceived financial needs -- vitamins, health care, a studio apartment -- but new financial opportunities as well. We could sell our antibody-rich blood. We could try various experimental treatments for anywhere from $50 (plus free blood work) to more than $1,000.
We moved to a postage-stamp-with-a-view in the Mission, and then the Young Men’s Health Study came knocking on our door, offering a small fee to complete an interview and a slightly larger fee to take a blood sample. The larger fee was contingent on the fact that you either didn’t know your HIV status or knew it was negative. We immediately suffered from memory lapses.
Because of privacy concerns, I sat under a eucalyptus tree on the front porch of the lovely Victorian house while Jonathan was interviewed and pricked in the kitchen. Then vice versa. We answered questions about which drugs we had or had not taken, which body parts we had or had not inserted in the partner’s rectum/mouth, with or without a condom. And then the study people went on their way.
But every year, or sometimes more frequently, they have returned. If necessary, they tirelessly call friends and relatives to track us down. They no longer come to our home; now we sit in a windowless room across town, filling in our bubbles in solitude. They continue to ask us about our sexual practices and drug use -- Think-ing of only those partners with whom you had anal intercourse in the last six months... -- but they’ve added other questions about various safe-sex marketing campaigns, de-pending on who their latest funders happen to be. They’ve amassed the largest body of statistics ever, and it’s obvious they’ll find some use for it into infinity. We are not as poor as we used to be, but, like you, we can always use the money.
Last year, Jonathan was too busy to go in for his $40 and the warm fuzzy glow he’d get from contributing to the vast accumulation of “knowledge.” But I wasn’t, so I went in and pretended I was he. We’ve been together five years, I know his mother’s maiden name, his Social Security number; no problem. I answered the questions as I guessed he would, honestly most of the time, but sometimes responding something like, “No, I’ve never encountered the Stop AIDS Project,” because it saved me the work of answering dozens of extra questions.
I’ve also taken advantage of focus groups. You usually sit in some slick room high above San Francisco around a corporate-type table. One wall is a two-way mirror and behind it, invisible, are the mysterious, unidentified “clients” who are funding this party. We’re served pastries and beverages. They pay anywhere from $40 to $100. Sometimes, they’ve wanted HIV positive men, and so I have gone and watched the early stages of get-your-viral-load-tested and take-your-meds marketing campaigns.
Once I get in, I am generally truthful, as I’m too lazy to lie. However, I’ve occasionally had to stretch the truth to get admitted in the first place. The worst lie, which I have lived in secret shame about ever since, was when I -- the child of very white Mennonites -- claimed to be Latino to get into a focus group. I know that this puts me in the same class as those white people in Australia who pretended to be aborigines to get their art and writing published.
However guilty I feel about that one, for the most part I just feel slightly amused and sorry for the researchers who actually believe that multiple-choice “tests” are a sound basis for making decisions. If I’ve provided the world with “wrong” information, I don’t much care: I don’t believe the truth is actually out there.
When Jonathan was 17, he got paid $10 to answer a sex survey at Kaiser, his HMO. He claimed to have had sex with hundreds of women, despite the fact that he’d actually had only one brief, drugged sexual encounter with a male classmate. Any guilt I’ve ever felt will be erased if I can make one person doubt statisticians’ claims that they mysteriously “factor” liars (us) out. Consider: Jonathan then went back, collected another $10 and filled out the survey again.