It was known as the Gay Disease...It was a scary time…You didn’t know if you could shake hands, if could touch, if you could just be in the same room as someone, we didn’t know for a long time how it was. Or if you had to be gay to get it. It was very bizarre at first.

-Tommy Lawson (Nashville Community AIDS Activist)^[1]

 

By Philip Staffelli-Suel

The acquired immunodeficiency syndrome (AIDS) epidemic emerged in Tennessee in the early 1980s as in the rest of the country. In 1981 reports of a strange disease initially in gay men was published. It was in 1982 AIDS received its name and not until 1984 that researchers discovered HIV (human immunodeficiency virus) led to AIDS.[2] Panic set in across the United States. The disease became increasingly associated with homosexuality and drug use – conservative journalist Lester Kinsolving referred to it as the “gay plague” in October 1982 – which furthered the spread of false information. [3] Homophobia increased, and the gay community came under attack. Complicating a federal response and muddying public perception. the Reagan administration did not publicly address the disease until September of 1985, four years into the epidemic.

While AIDS and HIV was initially considered an urban disease/virus, all 95 counties in Tennessee have reported cases.[4] The LGBTQ community in Tennessee could not wait for a coordinated state and federal response. It needed to act. Each of the three Grand Divisions (West, East, and Middle) responded to the emerging crisis in their own way.  Throughout Tennessee in 1985, two years before the AIDS Coalition to Unleash Power (ACT UP) was formed in New York City,[5] AIDS advocacy groups started at a grassroots level in the three major cities in each division – Knoxville, Nashville, and Memphis – before spreading out to serve their surrounding counties. This quick mobilization by the community across the state, and subsequent demand for action by government officials for all Tennesseans, is what makes Tennessee unique.

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Image of the 1993 March on Washington for Lesbian, Gay, and Bi Equal Rights and Liberation taken by Knoxville Photographer Jan Lynch. Source: Jan Lynch, 1993, OutCentral Collection, Middle Tennessee State University, Murfreesboro, Tennessee. Courtesy of Nashville Queer History, https://nashvillequeerhistory.org/archive/photos/.

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West Tennessee - Memphis

Memphis created the first AIDS advocacy organization in the state. Early on Memphis’ gay publication the Gaze ran numerous articles covering the disease.^[6] By 1984 members of the Memphis gay community decided to form a committee to tackle AIDS. Tommy Stewart, owner of a local gay bar, together with Larry and Harold Weaver, called a meeting at the Couch House Hotel on Sunday, January 13, 1985. These leaders formed the Aids to End AIDS Committee with the mission to raise funds for AIDS research to be used by the local University of Tennessee Center for Health Services and to help people living with HIV and AIDS (PLWHA). By March of 1985, Aids to End AIDS had a charter.^[7]

The organization was funded by the LGBTQ community in Memphis, and over time its services expanded. Aids To End AIDS Committee transitioned from a grassroots organization to a nonprofit and changed its name in 1992 to Friends for Life. This organization still services Memphis and West Tennessee today with over 65 employees and thousands of clients in an eight-county service area that includes Shelby, Tipton and Fayette counties in Tennessee; Crittenden County in Arkansas; DeSoto, Marshall, Tate and Tunica counties in Mississippi. ^[8] Their programs are innovative, such as the Youth Leadership Initiative funded by the Elton John AIDS Foundation, which “develops the next generation of leaders through the intersection of civic involvement, social justice and sexual health and wellness.” ^[9]  These programs influence current and future views on HIV/AIDS.

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Image of GAZE, local gay newspaper in Memphis, mentioning creation of ATEAC. Source Allen Cook, and John Stilwell, eds. Gaze. December 1984. Rhodes College Digital Archives – DLynx, http://hdl.handle.net/10267/29687.

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East Tennessee - Knoxville

In 1985 there were 12 reported cases of AIDS in East Tennessee. The number would continue to rise. That same year a group of community leaders of the LGBTQ community and church leadership at Knoxville’s Metropolitan Community Church decided to form AIDS Response Knoxville (ARK).^[10] The organization was volunteer-based, and it was not until 1987 that it was incorporated into a nonprofit.^[11] The organization formed out of a grassroots movement within the city and was sustained by the LBGTQ community, often through drag show fundraisers or direct donations. The organization grew over the next decade in its service to the community. It received contracts to distribute both state and federal grant funding to assist patients with housing and medical expenses and provide essential services to more than 700 people in Knox County and 15 other counties, including Loudon, Roane, Blount, Sevier, Anderson, and Hamblen. Legislation in 1998 (HB1166/SB0503) authorized the issuance of specialty license plates for supporters of ARK.[12] Changes in the organization and a loss of funding led to its closing in 2000. State and Federal money at the time to assist PLWHA in Knox County was temporarily transferred to the Knox County Health Department and the East Tennessee Human Resource Agency. ^[13]

While ARK no longer exists in the city, another AIDS/HIV advocacy group does, Positively Living, Inc. Positively Living was formed in 1996 by a group of community members within Knoxville who received a $25,000 start-up grant from the Robert Wood Johnson Foundation. Their mission was to PLWHA. The organization today operates as a 501(c)(3) nonprofit helping PLWHA through numerous different struggles. They operate with 40 staff members and over a $6 million budget.^[14] One of the many programs Positively Living provides is The Housing Opportunities for Persons With AIDS. This program is contracted to the organization by the Tennessee Department of Health, which administers a U.S. Department of Housing and Urban Development federal grant. The program helps provide PLWHA temporary housing, rental assistance, and opportunities for permanent housing. ^[15]

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Sign for a Protest for LGBTQ Liberation. Source: OutCentral Collection, Middle Tennessee State University, Murfreesboro, Tennessee. Courtesy of Nashville Queer History, https://nashvillequeerhistory.org/archive/photos/.

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Middle Tennessee - Nashville

In August of 1985, as the AIDS epidemic spread through Middle Tennessee, a group of men and women gathered to discuss AIDS in the Nashville gay community. They left the meeting with a plan to develop a community organization. Steve Smith and Michael Smith along with Thom Carpenter, Bob Keller, Tommy Powell and others worked to put together a network of volunteers that would care for those living with HIV/AIDS.^[16] In October of 1985 these community leaders, led by Steve Smith, adopted the name “Council on AIDS, Resources, Education and Support” (CARES).That same month Nashville CARES was incorporated as a 501(c) (3) nonprofit organization. In 2004, the name changed to “Community AIDS Resources, Education and Services.” This name change was intentional to give a nod back to their grassroots origin. ^[17] CARES, working with the gay community, was able to support itself through local funding, mostly (like ARK) through drag shows, including those at the club Warehouse 28. ^[18]  Nashville CARES would launch numerous educational outreach programs throughout the 1980s. One of these included a $5,000 grant gifted to the organization to mount an AIDS awareness campaign on Nashville public buses. The outreach from Nashville CARES to the local community affected how people perceived AIDS within the city.^[19

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Image of Bianca Page on top of a jungle theme float during a Pride Parade. Bianca Page was a local drag queen in Nashville. She raised over $1 million for AIDS for the city of Nashville. Source: OutCentral Collection, Middle Tennessee State University, Murfreesboro, Tennessee. Courtesy of Nashville Queer History https://nashvillequeerhistory.org/archive/photos/.

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According to Joseph Interrante, longtime Director of Nashville CARES, when he came to Middle Tennessee, CARES was a larger organization when compared to other AIDS organizations. CARES also serviced all 24 counties of Middle Tennessee. Interrante argued that the level of community engagement with city leadership was better in 1994 than other cities.^[20] For example, the city of Nashville had numerous talks within the community to educate them about AIDS/HIV.^[21] CARES eventually transitioned from a grassroots organization with volunteers to a full functioning nonprofit with paid staff that today serves PLWHAs with an operating budget of about $33 million.

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 From December 1-3, 1995, panels from The NAMES Project AIDS Memorial Quilt, a memorial to honor the lives of people who have died of AIDS-related causes, were displayed at the Tennessee State Museum in its previous location at the Polk Cultural Center in downtown Nashville. This flyer and booklet were handed out to visitors during the exhibition. Conceived in 1985, the AIDS Memorial Quilt is the largest piece of community folk art in the world as of 2020. It is currently archived in San Francisco and continues to grow, currently consisting of nearly 110,000 names sewn into its 50,000 panels. 

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Continuing the Mission

Tennessee’s LGBTQ community is understudied, and as such, there is often a common misconception that communities in the South were not as organized as their northern counterparts. However, throughout each of Tennessee’s three Grand Divisions, we see the emergence of AIDS organizations two years before ACT-UP is formed in New York City. These organizations were grassroots from their very conception and required community buy-in from the beginning. As these organizations grew, thanks to community support, they transitioned into staff operated nonprofits. These organizations still exist throughout Tennessee and continue their fight against AIDS/HIV. These organizations fought to decrease the number of deaths related to HIV, educate people, and advocate for people living with HIV/AIDS. Thanks to the continued work of these organizations, the 19,214 PLWHA in the state continue to have access to drugs and live healthier lives. ^[22]

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Philip Staffelli-Suel is a Museum Education Specialist and Program Assistant