How AIDS Forced the LGBT Community to Redefine 'Home'

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An ACT UP demonstration in City Hall Park, New York, May 2, 1988.
An ACT UP demonstration in City Hall Park, New York, May 2, 1988.Credit: Lee Snider / Photo Images
Neta Alexander
Neta Alexander
New York
Neta Alexander
Neta Alexander
New York

NEW YORK – What if history repeats itself as a tragedy? That’s a possible scenario, based on two demonstrations that took place in the United States, separated by nearly 30 years. The first was in Manhattan on October 31, 1989; the second this year, on June 23, in Baton Rouge, Louisiana. Both demonstrations were organized by social activists, both were aimed at government authorities that were turning their backs on the needs of HIV carriers and AIDS sufferers. One of the key figures hanging over both events was Donald Trump, the ruthless real estate tycoon of the 1980s who morphed into a president and is now pursuing a broad policy of cuts in programs that support AIDS victims and aim to prevent the virus’ spread.

The story of the earlier demonstration is currently retold in the black-and-white photographs that are part of the exhibition “AIDS at Home: Art and Everyday Activism,” at the Museum of the City of New York, in Manhattan. For example, a poster in the show, produced ahead of Halloween 1989 by the Act Up AIDS advocacy group, urges the public to take part in a demonstration opposite Trump Tower on Fifth Avenue, explaining, “Donald Trump received a tax abatement of $6,208,773.00 to build Trump Tower. That money could have rehabilitated approximately 1,200 city-owned apartments. Instead the apartments remain vacant. And sick people [with AIDS] remain on the streets.”

The hundreds at the protest outside the magnate’s building were furious that thousands of HIV carriers had lost their homes, while billionaires like Trump were enjoying huge tax breaks. There were various reasons for the housing crisis affecting both carriers and sick individuals in the late 1980s. Among them were renters driven into insolvency by astronomic medical bills, and the federal and local governments’ refusal to recognize a same-sex couple as a “domestic partnership.” As a result, men who died from the disease left behind partners who were compelled to evacuate their jointly owned or rented apartments, because they could not prove a family relationship to the deceased.

ACT UP member Ronny Viggiani at a demonstration at Trump Tower, October 31, 1989.Credit: Lee Snider / Photo Images

Some three decades later, this past June 26, activists and community advocates gathered in front of the city hall of Baton Rouge, the capital of Louisiana. They came to protest the defunding two local HIV clinics that provide care to 30 percent of the infected population in the city. While many of the signs carried by protesters were targeted against the mayor -- and not against President Trump -- the anger and sense of urgency expressed in Baton Rouge has been felt by social activists all over the country since the recent elections.

These fears are well-justified: Trump recently announced his intention to cut significantly the budget of the AIDS Emergency Plan, a project intended to help victims of the epidemic worldwide, especially in Africa. According to the proposed cuts, funding for the President's Emergency Plan for AIDS Relief is to be reduced from $6 billion to $5 billion starting next year. In June, six experts resigned from the Presidential Advisory Council on HIV/AIDS, claiming that "the President simply does not care" about the disease and its consequences.

The spread of AIDS in the 1980s and ‘90s forced members of the LGBT community to redefine 'home' and what it could serve for.

While Trump remains a major target of the LGBT community, the core struggles of AIDS victims have shifted considerably since the disease changed from being an epidemic that cut down tens of thousands of young people in America with harrowing speed, into a chronic illness for which preventive treatment is available. Surprisingly, the historical narrative that the new exhibition presents emphasizes a series of positive AIDS-related developments, the most prominent of which was the expansion of the idea of domesticity to include political assemblies, communal centers and cultural hubs. This, in turn, helped the AIDS community to challenge the idea of “family” as a hetronormative unit consisting of parents and children: during the dark years of the AIDS crisis in N.Y., for example, families included friends, voluntaries, “buddies,” and same-sex partners.

In this sense, the AIDS epidemic gave rise to many important, even positive, processes, whose implications are only now becoming apparent, some 35 years after the virus was first identified, in the early 1980s. As HIV carriers fought against a harsh stigma and frequently found themselves accused of spreading the disease by way of supposedly promiscuous or unsafe sexual behavior – overnight the public space they had been occupying for years became dangerous, traumatic, even violent. The result was that the spread of AIDS in the 1980s and ‘90s forced members of the LGBT community to redefine “home” and what it could serve for. Political meetings, cultural events, educational workshops (during a period in which many officials in the administration and health industry in America denied the scale and implications of the epidemic) all moved inside, as it were, for lack of an alternative.

The “AIDS at Home” exhibit, which runs until October 22, consists of dozens of photos, paintings and installations of different kinds. For example, the video work “Last Address,” by filmmaker Ira Sachs, is a nine-minute documentary focusing on the apartments where a large number of New Yorkers spent their last days before succumbing to AIDS. Each shot of a residence is accompanied by a concise caption in white letters, containing the deceased occupant’s name and address; some of the captions have more than one name. Unfolding slowly as it presents name after name, this poetic work has a cumulative effect, creating a feeling of despondency that’s hard to shake, despondency about an entire generation of men (and a few women) whom the epidemic carried off prematurely.

‘I can’t locate the pain’

The home, which had long been portrayed by painters and photographers as a family or feminine space, became the only space in which men could seek and receive tenderness and love.

But in addition to a glimpse of the isolation forced on the approximately 70,000 HIV carriers and AIDS sufferers who lived in New York between 1981 and 1996, “AIDS at Home” reveals dozens of artistic and creative attempts to turn the domestic space into an improvised studio or museum. For example, over years, artist and director Lori Grinker documented, with infinite gentleness, the life and death of her brother Marc, who was diagnosed as an HIV carrier in 1985 and died 11 years later, six days before his 40th birthday. Marc had left Manhattan to work as a law professor in Chicago. In the early ‘90s, his health began to deteriorate quickly, and in his last year his sister had to nurse him at home.

Grinker’s installation, “Six Days from Forty,” is a loving portrait, which includes a journal she and her brother wrote together and a video work that reconstructs one of the last conversations between them. Grinker addresses Marc in a confident, quiet tone, but he was too weak to reply audibly, so his answers appear on the screen in the form of soundless text. When she asks, “Does it hurt?” – a heartbreaking reply appears on the screen: “Yes, but I can’t locate the pain.”

Susan Kuklin, "Kachin and Michael in Michael's Apartment," 1987.Credit: Susan Kuklin

Other works consciously set out to shatter the stigmas connected to HIV carriers by means of photographic documentation of carriers and those who look after them: partners, family members, nurses or volunteers. A series of portraits by the journalist and photographer Susan Kuklin from the 1980s shows AIDS patients together with volunteer caregivers in what was known as “The Buddy Program.” The “buddies,” as they called themselves, nursed carriers and patients in their apartments during a period when many nurses and physicians were still afraid to touch them and often treated them wearing gloves and masks. To alleviate the loneliness and the absence of direct human contact, the program’s participants came to homes to chat, amuse and assist in a range of daily activities, such as housework, laundry, payment of doctors’ bills and cooking.

With Trump in power, the groups and mechanisms that were created to support carriers and the ill in the early 1980s now seem more essential than ever.

The fight against AIDS thus helped American art blur the boundaries between private and public. The home, which had long been portrayed by painters and photographers as a family or feminine space, became the only space in which men could seek and receive tenderness and love. That shift is especially evident in the large-scale paintings by Hugh Steers, who died from AIDS in 1995 at the age of 32. A 1992 painting, “Bath Curtain,” depicts an intimate moment between two young men. One of them lies prostrate in a bathtub, while the other sits on the toilet and gently massages the palm of his hand. The painting has a dual effect: It documents a domestic moment that embodies vulnerability, tenderness and gentleness, and at the same time it is also a political critique of the unavailability of medical treatment and the fear at that time of many to get close to carriers, still less touch them.

Other works of art sought to expand the concept of the family and assail a judicial, medical and economic system that hindered same-sex couples from obtaining assistance that at the time wasn’t guaranteed by law. Had it not been for the sense of urgency and the need to recognize gay couples as “domestic partners” in order to ensure their rights during the height of the AIDS crisis, it’s doubtful that the battle to allow same-sex marriage would have gained momentum and achieved success in the Obama era.

“Bath Curtain,” Hugh Steers’ powerful work from 1992. Depicts both a tender domestic moment and a political critique. Credit: Courtesy Alexander Gray Associates, New York

A landmark item on display is the executive order issued by then-New York Mayor David Dinkins, which for the first time permitted unmarried couples living together to register as “domestic partners.” On March 1, 1993, when the order took effect, dozens of couples waited in line to receive the coveted authorization allowing them to visit their loved ones in the hospital and remain in their joint home after the partner’s death.

The exhibition's curators maintain that the epidemic created an infrastructure for redefining activism and community activity. At a time when homes themselves became makeshift cultural centers, many in the LGBT community, fed up with the haplessness of the government and the medical establishment, established a host of service alternatives that continue to operate successfully.

These alternatives include God’s Love We Deliver, established in 1986 to supply meals to housebound AIDS patients, and became one of the largest volunteer organizations in New York; the AIDS Resource Center, which in 1986 set up Bailey House in the city, the first institution of its kind in the world aimed at providing physical and psychological treatment to suffers, and to offer them protected housing; and organizations such as Housing Works, which raises funds for the homeless (many of whom have been diagnosed as carriers of or have contracted AIDS), and Stand Up Harlem, founded to serve the needs of carriers and patients in the African-American community.

With its emphasis on artistic expression and community life, “AIDS at Home” leaves room for optimism. But the choice of placing Sachs’ “Last Address” in the exit area of the exhibition is a reminder that the struggle is far from over. As the demonstrators in Manhattan and Baton Rouge wanted to remind the American public, the need to fight for medical insurance to cover the high costs entailed by life with HIV is the result of distorted priorities, which consider health care a luxury and not a basic right. With Donald Trump in power, the organizations and mechanisms that were created to support carriers and the ill in the early 1980s now seem more essential than ever.

This vulnerability is embodied in one of the more memorable works in the exhibition: a large light-blue wool pill(ow) embroidered with the number 701, which is imprinted on the PrEP (pre-exposure prophylaxis) pill Truvada, which can prevent HIV-negative people from becoming infected. According to American artist Ben Cuevas, who knitted the pillow, preventive treatment with this pill (approved for use in the United States in 2012) can herald a “new sexual revolution” for those able to afford its high price (about $1,400 a month in the U.S., for those without insurance coverage). The result is a prophylactic available exclusively to the rich, or those fortunate enough to have comprehensive insurance. Cuevas’ work, whose soft hue and wooly texture connote softness and tranquility, is a perfect metaphor for the present moment: a time when comprehensive, effective treatments exist that can prevent infection or render the disease chronic, but when everyone is not necessarily eligible to receive them.

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