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A Historical Reflection of the Early Years in the Age of AIDS

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As a young gay person growing up in the 1950s and 1960s, I was virtually alone. My only true friends were my dog Lady, my parakeets, and tropical fish. I owned three fish tanks, a 20 gallon my father made for me, which contained most of my adult tropical fish, an 8 gallon I used to raise the baby fish, and a 5 gallon I used as an infirmary for sick fish.

Not only did the fish ease my loneliness growing up different, but they also taught me much about life itself. I learned fairly soon after taking up my hobby how to determine the sex of the fish. It was a quite simple observational  procedure: the females had rounded lower fins while the males had elongated lower fins.

I would sit and observe life in the tanks for hours. I was about 9 years old, and one day I asked my mother why some of the male fish were tickling the others with their lower fins? She smiled coyly and said that they were “making love” with the females just like men make love with women. I guess she was just waiting for my questions to begin telling me her version of the facts of life. She continued, “A man lies next to a woman and puts his penis into her vagina, and the two of them make a baby. Fish do the same thing. That’s why you have so many baby fish swimming around in your baby aquarium.”

“But if that’s true,” I countered, “how come some of the females only like to swim around with other females and fight off the males when they get too close, and how come some of the males tickle other males with their lower fins?”

Caught a bit off guard, she responded, “Well, that’s because the females are good friends and might not want to make love as much as the males, but they do sometimes, and the males aren’t making love with each other; they’re just playing.”

Years later, I leaned they weren’t “just playing,” and the females weren’t “just good friends.” Transferring this knowledge to humans, I learned that some people fall in love with others of the same sex. Unfortunately, my mother’s homophobic conditioning, coupled with a lack of positive lesbian, gay, bisexual, or transgender (LGBT) images and role models in my life kept me locked inside my closet, of rather coffin, for a number of years.

So how do we create change in a homophobic environment? How do we swim against the strong current of invisibility and bigotry to reach the safe cove of positive identity development and societal appreciation and support?

One way is simple, but for many of us, not so easy: whenever possible we can come out of the closet of denial and fear to family, co-workers, peers, acquaintances, bank tellers, cabdrivers, shop keepers, anyone, everywhere. Though we now have a special day set aside, National Coming Out Day, which many of us celebrate, we can make every day of our lives a special day.

People have said to me, “I’m not going to come out to people. I don’t need everyone to know about my sex life.” This statement, I’m afraid, reflects an extremely limited view of sexual identity. For me, being gay or queer is a whole lot more than with whom I have sex. My sexual identity determines the very way I view the world. Within a homophobic society, my sexual identity frames my reality.

I’m reminded of the poignant words of Harry Hay, one of the founders of the Mattachine Society — an organization established first in Los Angeles during the 1950s – and the Radical Faeries – a queer spiritual movement.

Hay believed that we possess a special “gay sensibility” giving us a unique vision, a creative spirit that, if allowed to thrive unimpeded, can bestow remarkable benefits on society. Unfortunately, because of the homophobic environment in which most of us are forced to live, he concluded,

“We pulled the ugly green frog skin of heterosexual conformity over us, and that’s how we got through high school with a full set of teeth. We know how to live through their eyes. We can always play their games, but are we denying ourselves by doing this? If you’re going to carry the skin of conformity over you, you are going to suppress the beautiful prince or princess within you.”

And in his book The Gay Mystique, Peter Fisher states of men, but this is true of women as well,

“Every time a homosexual denies the validity of his feelings or restrains himself from expressing them, he does a small hurt to himself. He turns his energies inward and suppresses his own vitality. The effect may be scarcely noticeable: joy may be a little less keen, happiness slightly subdued; he may simply feel a little run-down, a little less tall. Over the years, these tiny denials have a cumulative effect.”

For those who stubbornly adhere to the theory that same-sex attractions and gender non-conformity as abnormalities, I would respond with a reference to the theories of biologist Julian Huxley who pointed out that no negative trait (and as we know, in biology a negative trait is one that does not reproduce itself) ever appears in a given species millennia after millennia unless it in some way serves the survival of the species. “Survival of the species,” that phrase is key. We are on this planet for a reason.

Throughout the 1970s and early 1980s, in my home state of Massachusetts, we waged a hard and often bitter fight for the passage of an LGBT state-wide civil rights law, similar to the precedent-setting law passed in Wisconsin. Throughout those years, we had concrete and inspirational support from visionaries of times past and present, marginalized people who worked throughout their lives to ensure a just and free society.

These included German and British emancipation pioneers in the struggle for LGBT rights over a century ago; leaders from the Women’s Suffrage, Reproductive Freedoms, and Labor movements, and those who during past generations refused to accept the status quo – people challenging racial, ethnic, religious, and sexual inequalities; people standing up to protect the rights of  women to control their own bodies; people advocating for the health and working conditions of farm workers, coal miners, seniors, people with disabilities, young people, and poor people; those fighting to halt the genocide of indigenous peoples; the exploitation of workers in developing nations; the advancing encroachment of a nuclear winter; the gradual and irreversible destruction of our planet.

As Harry Hay aptly recalled, throughout history we have functioned “as messengers and interceders, shamans of both genders, priestesses and priests, image makers and prophets, poets and playwrights, healers and nurturers, teachers, and preachers, tinkers and tinkerers, searchers and researchers, and always almost all of them were visionaries.”

If this is true, as I believe it to be, I ask then, “Why are we still marginalized in some sectors of our society and throughout the world?” We are the teachers, guidance counselors, day care workers, parents – and still they attempt to prevent us from having contact with the youth or our nation.

We are the social workers psychologists, workers at homeless shelters, and rape crisis centers – and still they blame us for the breakup of what they call the “traditional family.”

The reality is that we are holding up this culture. If all the LGBT people suddenly left the helping professions, this country would literally crumble. If all the LGBT people had had sat back and waited for our government in Washington and the states to set a unified and effective HIV/AIDS policy, we now would be well on our way to virtual extinction.

And why, you may ask, was the governmental response to HIV/AIDS so meager? According to Randy Shilts in his book An the Band Played On:

“No one cared because it was homosexuals who were dying. Nobody came out and said it was all right for gays to drop dead; it was just that homosexuals didn’t seem to warrant the kind of urgent concern another set of victims would engender….Scientists didn’t care because there was little glory, fame, and funding to be had in this field….Nobody at the National Cancer Institute seemed to be in much of a hurry. The new syndrome clearly was a very low priority, even as it was becoming clear to more and more people that it threatened calamity.”

In the face of this threat, we didn’t just sit back. We mobilized. The women’s health-care empowerment movement predates AIDS, as recorded in the ground-breaking work, Our Bodies, Our Selves. By the time the effects of HIV were first felt, a grassroots network of medical, social, political, and informational organizations had already been put in place. Some of us, who under other circumstances would probably not have engaged in political organizing, were spurred into activism by the crisis.

LGBT and heterosexual people were in the forefront of a coordinated effort to provide care and support for people with HIV/AIDS. Existing LGBT community service centers expanded their services, while new centers were established dedicated to serving the needs of people HIV/AIDS: people of all races, socioeconomic classes, sexual and gender identities, and their loved ones.

These centers, sometimes referred to as AIDS Service Organizations (ASOs), provide counseling, education, medical consultation and advocacy, legal and financial assistance, and guidance through the dizzying maze of local and national agencies. Volunteer “buddies” assist people with HIV/AIDS. And trained volunteers staff telephone hotlines to answer questions and refer people to local and national agencies.

In addition, we must not overlook an irony. LGBT people developed safer sex strategies and educational campaign and remain some of the leaders in prevention efforts. Just think about it: LGBT people teach heterosexual people how to decrease their risks of infection during sexual activity.

As important as all of these initial organizing efforts were, some of us realized that that we could do so much more to directly confront the crisis. We charged the government with being unconcerned with the epidemic because the majority of HIV-related cases existed in what we called “The 4-H Club”: Homosexuals, Haitians, Heroin users, and people with Hemophilia – most of whom our society considered as disposables. We also faulted the very system on which U.S.-American medicine was based, and we declared that clinical drug trials and drug distribution procedures as then constructed were inhumane.

Subsequently, by 1986, militant groups known as ACT UP (AIDS Coalition to Unleash Power) organized under the banner “Silence = Death.”

“We are a nonpartisan group of diverse individuals united in anger and committed to direct action to end the AIDS crisis,” and so begins another  meeting of ACT UP chapters throughout the U.S., Canada, Europe, and Australia. Updating 1960s-style movement strategies, ACT UP groups continue to challenge what we still often regard as an intransigent government, arrogant medical establishment, greedy pharmaceutical and insurance industries, and a frightened and apathetic populous. We also are fighting against the internalized oppression within our own communities.

A new era dawned March 24, 1987 when a handful of furious and committed AIDS activists staged a sit-in at rush hour on Wall Street in protest of what they saw as foot-dragging by the U.S. Food and Drug Administration in withholding approval of promising HIV drugs, and price gauging by pharmaceutical companies: in particular Burroughs-Wellcome, which charged up to $13,000 per year for its antiviral, AZT: a drug, by the way, developed at public expense, and the Illinois-based Lyphomed Corporation for its pricing of pentamidine, a prophylaxis for pneumocystis carinii pneumonia.

The following October, over half a million people descended on Washington, DC as part of the National March for Lesbian and Gay Rights. Out of the March grew a unique coalition concerned with a number of progressive issues, but focused on AIDS. A new umbrella organization called ACT NOW (AIDS Coalition To Network, Organize, and Win) oversees communications and plans actions on a national scale.

Based on a philosophy of direct, non-violent action, ACT UP members conducted highly visible demonstration often involving acts of civil disobedience in which participants often place themselves at risk for arrest. Dramatic and creative visuals are often used to garner media and public attention.

ACT UP’s agenda included pushing for greater access to experimental drugs and a streamlining of the drug trials process; decentralized drug trial processes in which subjects and their physicians determine cooperatively the most appropriate trial drug treatment; ensuring that third-party payers cover the costs of drugs once medical consensus has been reached rather than waiting for the FDA to conclude its paper chase; an end to inhumane placebo trials; expanded informed consent to guarantee all drug trial subjects the right to results, even preliminary, from trials in which their participation has made possible.

They also argued that People with AIDS (PWA) must be represented on the Institutional Review Boards of every HIV/AIDS drug trial; allowing concurrent prophylactic treatment to anyone participating in drug trials; fair pricing of drugs by the pharmaceutical companies, and access to their books to justify the prices they charge; treatment for drug addiction on demand; and of enormous concern, universal access to health care.

In addition, they pushed for national anti-discrimination laws in terms of HIV status and sexual identity; protecting against mandatory HIV testing and quarantining; insurance and social security benefit protections; job and housing protections; freedom of immigration; and treatment for all incarcerated persons.

This agenda was controversial and, indeed, ACT UP and its tactics were often criticized, even from within the ranks of the larger LGBT community. ACT UP, however, lists a number of victories to its credit, though history will have to be the final judge of its ultimate effectiveness.

When looking back over the history of HIV, one thing seems certain. LGBT people have been in the forefront of organizing since physicians first recognized the syndrome. We are there now working on the frontlines and we will continue to be there giving our knowledge, our compassion, our funds, and our muscle until HIV no longer poses a significant threat to the health of anyone on this planet. Also, I can tell you with great certainty, in areas of health outside HIV, our leadership, creativity, and commitment will help this country survive into the next century.

So, if you find yourself beginning to pull that ugly green frog skin of conformity over your head, look into the mirror and scrub it away. In so doing, you will be pushing the boundaries ever further from the center. Your vision can create a new tomorrow, a safer and more just tomorrow, a tomorrow where we will see the end to the list of names on the AIDS Memorial Quilt, a tomorrow that is truly better and more equitable than today.

Dr. Warren J. Blumenfeld is author of Warren’s Words: Smart Commentary on Social Justice (Purple Press); co-editor of Readings for Diversity and Social Justice (Routledge) and Investigating Christian Privilege and Religious Oppression in the United States (Sense); editor of Homophobia: How We All Pay the Price (Beacon Press); and coauthor of Looking at Gay and Lesbian Life (Beacon).

Written by Warren Blumenfeld

November 5th, 2017 at 8:59 am

Posted in Uncategorized

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