Exploring one LGBT organization’s impact on those living with HIV/AIDS in Austin, Texas

David M. Brown, Christina Lively, & Mary-Jo DelVecchio Good

“The Revolution is not an apple that falls when it is ripe. You have to make it fall.” Che Guevara

ABSTRACT

AUSTIN, TEXAS, in 1985 a group of Latino lesbian, gay, bisexual and transgender (LGBT) activists stood up for themselves and their communities and founded the Austin Latino Lesbian Gay Organization (ALLGO), a 501c3 non-profit grass-roots organization. In order to be open about their sexual identity and also address the issues important to them, ALLGO’s founders felt they needed to launch their own organization. Thirty years later, ALLGO continues to have a base of operations in the Texas capital and continues to fight for this equity agenda concerning LGBT people of color.1 This article will explore the strengths of this organization through the author’s own experience and also through the lens of social theories presented by experts.

On November 2, 1995, All Souls’ Day, it was an unusually cold night in Austin, Texas. On the steps of Cristo Rey Catholic Church a group of gay men, lesbians and transgender people carried fire: some held lit candles, others held flaming torches. Their faces showed grief and sadness because all had lost friends and loved ones to HIV/AIDS. Many were themselves HIV-positive. As gay Latinos, African American, lesbian and transgender people, they had experienced first-hand “the social, political and economic forces that drive up the risk of ill health”.2 On this night, they chose to demonstrate their outrage over the inequity that caused disease and suffering to besiege their community. Their expressive faces, glowing in the light of the candles and torches, revealed an almost angelic countenance, like the glowing statues inside the sanctuary, except these faces were real: alive, emotional, determined, and human.

Outside the large, imposing doors of the church, they waited as hundreds of parishioners filed out. Some looked disapprovingly at the torch bearers and candlelight vigil, while others saw the faces of their sons, daughters, and friends who had suffered loss and pain. Some parishioners joined the activists holding candles in solidarity against HIV/AIDS. By taking a stand with ALLGO, they were also taking a stand against homophobia.

In total, over fifty people chose to stand vigil and protest shoulder to shoulder with LGBT activists in solidarity. In the heart of East Austin’s predominantly Latino/Hispanic barrios and neighborhoods at the Virgen de Guadalupe family center where the activists participated in a contemporary Mexican celebration of “el Dia de los Muertos,” the Day of the Dead, which the Spanish Colonialists replaced with All Souls Day.3

The pleasant aroma of corn tortillas, hot chocolate, pastries and freshly brewed coffee wafted through the Virgen De Guadalupe family center. In the main hall 30 beautifully decorated altars served as a tribute to loved ones who died of AIDS. Each altar was adorned with “ofrendas”: offerings to the souls of the dead. The items included things the deceased most enjoyed in life: photos and pictures of partners and friends, of nieces and nephews, parents and grandparents, dogs, cats, horses and other loved ones. The altars included boxes of chocolates, tobacco, tequila, beer and wine. Carefully selected and arranged pictures and ofrendas told the story of a vibrant person, full of creative and human potential whose life was cut down by AIDS. Everyone admired the ofrendas and pictures on each of the altars in the main hall. The attention and care given to decorating each person’s altar with meaningful and relevant ofrendas exemplifies how people made meaning and processed their loss of loved ones through this cultural activity.4

The evening of November 2, 1995 ended with a dramatic interactive dance of “Muerte” (death) personified. In the middle of the main hall, a tall imposing figure dressed in black robes and wearing a skull for a mask came out to dance with anyone present. All one had to do was take Muerte’s hand. Everyone wanted to take Death’s hand for a dance: male and female, young and old, children and their grandparents. This jovial and lively dance celebrated and made light of death. Octavio Paz described this perspective on death when he stated, “There is perhaps as much fear in his (Mexican) attitude as in that of others, but at least death is not hidden away”. 5 The HIV-positive men, women and children at the Virgen de Guadalupe Family Center on el Dia de los Muertos took death’s hand for a demonstration of the daily dance they experienced with death every day since their diagnoses.

During the years I worked as an HIV/AIDS counselor and fiscal manager for ALLGO, I saw first-hand the devastating structural violence of poverty and its effect on these communities. One Mexican American family I worked with included several family members with diabetes. Lack of any kind of needle exchange and the cost of obtaining sterile syringes left the diabetics in the family no alternative but to share needles on a daily basis when they injected themselves with insulin. Shortly after one diabetic family member became severely ill, another diabetic in the family did as well. The staff at ALLGO suggested that all the family get tested for HIV, and the results were tragic: four out of the five diabetics in the family tested HIV-positive. The family did not believe they were at risk for contracting HIV because they were injecting insulin as prescribed by their doctors rather than as a street drug or controlled narcotic. The need for greater bilingual education and outreach was painfully clear, but garnering the support for such programs proved challenging.

From the mid-1980’s throughout the 1990’s, ALLGO’s commitment to linguistically relevant outreach included bilingual case workers, peer counselors, and partnership with other healthcare delivery agencies, homeless and food shelters that provided services to Spanish speaking patients and clients. ALLGO prepared written materials, brochures and health advisory pamphlets in Spanish and English formats to overcome linguistic obstacles, and some materials were designed to relay information visually through pictures. Written and illustrative materials for men who have sex with men (MSM) drew complaints from a small but vocal number of local conservative Catholic parishes and African American churches in the predominantly Latino and African American East Austin communities. This resistance was a formidable obstacle for ALLGO’s outreach workers in areas of the city where many commercial sex workers, injection drug users, closeted gay and bisexual MSM all needed access to information and educational materials; they also needed condoms and lubricants to protect their sexual health and contain the spread of HIV in Austin’s must vulnerable and marginalized communities. Underlying ALLGO’s activism initiated in the mid-1980 was the premise that access to medical care and treatment for HIV is a fundamental human right.

ALLGO Assists HIV-Positive People to Navigate US Federal and Texas State Biopower

HIV-positive people must navigate and interact with multiple government agencies. Effective HIV treatment requires monitoring of data collected from regular viral loads and CD4 cell counts. Every time HIV-positive people roll up their sleeves and expose their veins to the agency phlebotomist, they experience the “panopticon” of Michel Foucault’s biopower: the monitoring and disciplining of HIV-positive populations by constant surveillance and self-surveillance through the many blood draws for quarterly immune panels, viral loads and lab reports generated at regular intervals to monitor the HIV-positive person’s disease, immune functions, organ functions now stored on electronic records and easily made available to the diffused powerful actors now in the person’s life.6 ALLGO supports people at every step of this complicated process.

Two Texas Governors, One Decade, 1990-2000, Ann Richards (D) and George W. Bush (R)

Politics is all about being social and friendly, but most importantly, being connected. After the election of Ann Richards in 1990, the popular new governor was especially proactive in promoting women and minorities to positions of power in Texas, and several ALLGO board members with close ties to Ann Richards benefited from the governor’s largesse. Many LGBT ALLGO board members are successful civic leaders in Austin’s local business, arts, and bilingual media and television sectors. These well-connected individuals use their political ties and business networks to advance ALLGO’s equity agenda through their contacts with local and state political elites. ALLGO’s hundreds of members and staff organize grass-roots activism through marches, protests, HIV/AIDS outreach and education in the barrios and low-income Austin communities.

ALLGO continued to engage in broad spectrum political activism and outreach, but one of the greatest medical breakthroughs of the century was the emerging medical treatments for AIDS and HIV through Highly Active Antiretroviral Therapy (HAART). By 1996, combination therapy transformed the nightmare of AIDS from death sentence to normal life, free from morbidity and early mortality but accessing the costly antiretroviral drugs for thousands of HIV-positive Texans was going to require ALLGO’s activism to expand at all levels, including outreach to conservative leaders in state government. By 1997, half way through the first term of Governor George W. Bush, Texas became one of a handful of states to fund far-reaching HIV state drug access programs for anyone with HIV/AIDS, regardless of ability to pay. After former Texas Governor Bush was elected the 43rd President of the United States, he became one of the great champions of global AIDS relief by creating the $15 billion U.S. President’s Emergency Plan for AIDS Relief (PEPFAR).

Gay and Lesbian Latinos, Homophobia and HIV/AIDS

It is difficult to grasp or comprehend how gays and lesbians experience multi-level social suffering from forces of structural violence. The openly gay, Pentecostal preacher and gay rights activist, Rev. Troy D. Perry founded the Metropolitan Community Church in Los Angeles, California in 1968 to minister to gays and lesbians. He tells the experience of one gay Latino man and his rapid and tragic death of AIDS. Steve Regalado who attended the MCC Church in Los Angeles, was constantly bombarded by condemnation from television, family, community and the Catholic church that being homosexual was immoral and depraved.7 After a blue spot appeared on one of Steve’s limbs, he went to a doctor who confirmed: "Your tests are positive…you have Kaposi’s sarcoma…you have AIDS." He (Steve Regalado) was unable to speak of AIDS because he knew the words would automatically be translated to mean homosexual and for his family and their pseudo macho culture, open homosexuality meant indefensible shame. It was automatically a cause for derision and dishonor. After his diagnoses Steve could only think about dying with AIDS… he’s rushing to embrace death to get away from the embarrassment, the guilt, the mean things people say.7

As much as Rev. Perry wanted desperately to change the young man’s mindset from dying of AIDS to living with AIDS, “there had been too many years, formative years, of irreversible social condemnation which were having a morbid effect upon their victim”.7 It was only a few months after his diagnoses that Steve was dead. Perry writes, “Steve was infected with two diseases. AIDS was first. The second was a debilitating personal homophobia that exists within our gay and lesbian communities as much as in the non-gay communities which oppose us”.7

ALLGO’s activists have been fighting the structural violence of homophobia in Central Texas since 1985. In Austin, Texas those seeking treatment for AIDS can access clinics staffed with trained healthcare professionals and HIV/AIDS-specialist doctors, and face few barriers to the latest antiretroviral medications. However, compelling evidence suggests that HIV-positive patients in the U.S. do not adhere to taking their antiretroviral medications as well as patients in Africa do.8 In one study done by Partners In Health in Rwanda (IMB), a survey of 223 people on community-based ART for two years at IMB-supported sites revealed that 98 percent had suppressed viral loads (>500 copies/mL) compared with a meta-analysis of ART in North America that found only 75 to 85 percent of HIV patients had similar viral load suppression in response to treatment. 8 How could such disparity in adherence exist in US urban centers-especially in light of the significantly greater obstacles to treatment faced by HIV-positive patients in Africa? One possibility is that such data reflect how the structural violence of homophobia impacts the health outcomes and morbidity of HIV-positive gay men in America, especially gay men of color, who also suffer additional race, ethnic and economic based structural violence.

A biosocial analysis of HIV/AIDS demonstrates that the biological causes of the disease, that is, the Human Immunodeficiency Virus, along with the social determinants of health such as culture, history, religion, and political economy, can together aggravate and exacerbate the negative impact of the disease on different populations and communities. For example, two contrasting populations illustrate different potential claims about the cause of HIV/AIDS: gay men living in the United States become vulnerable to acquiring HIV through social suffering experienced living in a homophobic society which marginalizes their existence; by contrast, heterosexuals living in sub-Saharan Africa, become vulnerable to acquiring HIV through structural violence experienced by living in abject poverty under historically institutionalized colonial systems. It is possible that the HIV-positive community ALLGO serves in Central Texas is more vulnerable to treatment failure through viral resistance as a result of inconsistent compliance with medication adherence due to both society’s homophobia and the individuals’ own internalized homophobia, which ravages the physical and mental health and ultimately increases both HIV/AIDS related morbidity and mortality among gay men in the United States.

What distinguishes ALLGO’s approach to HIV/AIDS healthcare delivery and even broader community development is that the organization goes beyond simply fighting for basic human rights. ALLGO pursues a capabilities approach to build and strengthen the LGBT community. Amartya Sen describes the capabilities approach as “elementary capabilities and justice like being able to avoid such deprivations as starvation, undernourishment, escapable morbidity and premature mortality, as well as the freedoms that are associated with being literate, and numerate enjoying political participation and uncensored speech”.8 Through a capabilities approach, ALLGO has served the LGBT community by removing barriers to substantive freedoms such as poverty, discrimination, repression, lack of access to healthcare and education. ALLGO’s community development approach is about using demonstrations, protests, activism and political networking for the purposes of removing barriers that block LGBT and other people of color from the basic pursuit of meaningful and fundamental capabilities. By taking this approach, ALLGO’s activism targets capabilities violations in Austin, Texas and beyond as a motivation for social and political change. The substantive freedoms for which ALLGO advocates are described by Sen as “to choose a life one has reason to value,” for ALLGO, that is a life where LGBT people of color are not constrained by structural violence, homophobia and other social determinants of health that adversely impact people with HIV/AIDS.

Regardless of race, gender, ethnicity, socio-economic and educational attainment, every LGBT person in the world has suffered some degree of sexual deprivation and the opportunities for sexual satisfaction by the pervasive structural violence of homophobia. ALLGO activists fight and relentlessly pursue reform in the social, cultural, educational, legal and political sectors of society to remove barriers that deprive LGBT people’s basic right to healthy and consensual sexual expression.

Conclusion

In 2015 ALLGO celebrates its 30th anniversary. The organization’s remarkable journey and continued activism are an inspiration to many LGBT people in Austin, Texas and beyond. Four observations offer insights into ALLGO’s long term success and sustainability: First, ALLGO has operated with both zeal and political pragmatism to advance an LGBT equity agenda. Second, community activism and fighting injustice at any level requires a zealous and militant spirit: ALLGO has never compromised its agendas and continues in the spirit of Che Guevara (quoted at the start of this article), as a militant organization, zealous to advance an LGBT human rights equity agenda. Third, ALLGO has never allowed this empowering zealous spirit to limit its political maneuverability in a conservative state. ALLGO reserves zealous expression for public demonstrations, protest marches and shares this spirit in solidarity with other human rights organizations in Austin to advance broader human rights agendas. Fourth, ALLGO uses its networks of business ties and political contacts to leverage a capabilities approach to develop the LGBT community.

ALLGO’s members and leaders are imbued with a spirit of service and calling which sustains both the individuals of ALLGO and the organization itself.9 Mother Teresa stated: “We have drugs for people with diseases like leprosy. But these drugs do not treat the main problem, the disease of being unwanted”.10 Mary-Jo DelVecchio Good, PhD, observed, “ALLGO is more than just an organization; it is an emotional gift made up of the shared resolve of many LGBT individuals to face in solidarity homophobia and injustice and celebrate being part of movement and organization where they know unequivocally they are valued and wanted for who they are.”11 ALLGO’s calling to change the status quo, reform policy, and improve the conditions for the LGBT community, especially those affected by HIV/AIDS, makes this grass-roots organization a mighty force, able to stand, and stand effectively against the cruel forces of homophobia and structural violence.

Acknowledgments

The article is based on a paper written for “Economics 2395 – Health and Social Justice: Reshaping the Delivery of Health”, a Harvard course taught by Paul Farmer and Amartya Sen. MMSc-GHD Program Director Joia Mukherjee suggested exploring ALLGO through the lens of social justice theory. David M. Brown wishes to thank Joia Mukherjee, Paul Farmer and Amartya Sen for their inspiration and thought leadership.

References

  1. History & Future « allgo.org: a Texas statewide organization for queer people of color. (n.d.). Retrieved December 19, 2014, from http://allgo.org/allgo/about/history
  2. Kim, J. Y., Farmer, P., & Porter, M. E. (2013). Redefining global health-care delivery. Lancet, 382(9897), 1060–9. doi:10.1016/S0140-6736(13)61047-8
  3. Day of the Dead history: Ritual dating back 3000 years. (n.d.). Retrieved December 19, 2014, from http://www.azcentral.com/story/entertainment/holidays/day-of-the-dead/2014/09/24/day-of-the-dead-history/16174911/
  4. Kleinman, A. (2010). Caregiving: Its Role in Medicine and Society in America and China.: EBSCOhost. Ageing International, 35(2), 96–108. Retrieved from http://web.b.ebscohost.com.ezp-
  5. Paz, O. (1962). The labyrinth of solitude: life and thought in Mexico. Harvard University. New York: Grove Press. doi:0394172426
  6. Foucault, M. (1978). The History of Sexuality, volume 1: an Introduction. New York: Pantheon Books.
  7. Perry, T. D. (1990). Don’t be afraid anymore : the story of Reverend Troy Perry and the Metropolitan Community Churches. New York: St. Martin’s Press.
  8. Paul Farmer, Kim, Jim Yong, Arthur Kleinman, M. B. (2013). Reimagining Global Health. Berkeley: University of California Press.
  9. Brown, D. M. (1990). Ethical Lawyer – Contradiction in Terms or Reality. William Mitchell Law Review, 16(5), 1293–1298.
  10. Yancey, P. (1995). The Jesus I Never Knew. Grand Rapids, MI: Zondervan.
  11. DelVecchio Good, Mary-Jo. Personal communication, May 22, 2015.