The Measure of Humanity: Compassion and the Legacy of HIV/AIDS

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Diana shakes hands with a resident of the AIDS hospice, Casey House, in Toronto in October 1991. Photo: Tim Graham

In a world filled with suffering, compassion holds the power to unite and heal. It begins within our families and circles of friends and extends outward into our communities and the world at large. Acts of kindness open our hearts to a nobler way of living.

As the world continues to grapple with the enduring effects of the coronavirus pandemic, 2025 marked 44 years since HIV/AIDS was first identified in the United States. Since 1981, nearly 33 million people have died from AIDS-related illnesses worldwide—3 million in South Africa alone (UNAIDS, 2020). Four decades later, there is still no vaccine and no cure. Yet, amid fear and loss, the AIDS crisis has inspired remarkable acts of courage: political activism, artistic creativity, advances in LGBTQIA+ rights, new models of care, and the rediscovery of compassion.

Enormous progress has been made in the global response to HIV, but stigma, discrimination, and inequality persist (Kontomanolis et al., 2017). These forces continue to make people vulnerable and deter access to prevention, treatment, and care. From the beginning, AIDS challenged society’s capacity for empathy. The epidemic forced difficult conversations about race, gender, sexuality, drug use, and poverty—issues that have long shaped social and governmental responses to illness. In many places, misinformation still fuels fear: that HIV can spread through casual contact, or that people with the virus should be shunned. For some, religious beliefs link the disease to moral punishment. As a result, countless people living with HIV have lost jobs, homes, and even family ties.

From a medical standpoint, HIV is a chronic viral infection. But socially, it is far more complex: a condition marked by stigma, isolation, and vulnerability. Sociologist Erving Goffman (1963) wrote that when people are marked as different, “they are reduced in our minds from a whole and acceptable person to a tainted, discounted one” (p. 3). Once someone is seen as “not quite human” (p. 3), discrimination becomes easier.

During the height of AIDS hysteria in the 1980s, fear of transmission, fueled by sensational media coverage and inadequate public education, led to widespread panic. A 1985 Los Angeles Times poll found that half of Americans supported quarantining people with AIDS, nearly half favored issuing identity cards, and some even endorsed tattooing those infected (New York Times, 1985). Many patients lost jobs and housing, while hospitals and funeral homes refused them service. Families often hid the cause of death in obituaries, too ashamed to name AIDS (Randolph, 1989).

For those left behind, mourning could be just as painful. LGBTQIA+ partners were frequently excluded from caregiving and funeral arrangements by the deceased’s biological families. The result, as grief scholar Kenneth Doka (2008) described, was disenfranchised grief, a loss that society refuses to acknowledge or honor.

In the absence of institutional care, communities stepped in to provide support. Grassroots organizations, such as the Gay Men’s Health Crisis in New York City, emerged from necessity. As cofounder Rodger McFarlane recalled, “We were forced to take care of ourselves because we learned that if you have certain diseases, certain lifestyles, you can’t expect the same services as other parts of society” (as cited in Hevesimay, 2009). Volunteers became caregivers, advocates, and educators, transforming anger and grief into action.

In 1988, Dr. Gerald Friedland identified three reasons for the lack of compassion toward people living with HIV/AIDS: fear of contagion, moral judgment about perceived social worth, and humanity’s deep-seated fear of plague itself (Friedland, 1988). Sociologist Leonard Cox (2002) described how, for many AIDS patients abandoned by family, the hospital became home, and caregivers became family. For these patients, compassion meant more than kindness; it was a matter of dignity.

Statistics alone cannot capture the human toll. As Joseph Stalin cynically observed, “If only one man dies of hunger, that is a tragedy. If millions die, that’s only statistics” (Lyons, 1947, p. 9). Faced with mass suffering, people can become emotionally numb, a phenomenon psychologists call psychic numbing (Slovic et al., 2013). Compassion requires energy and vulnerability, and we tend to reserve it for those closest to us—our own “in-group.” Genuine empathy demands that we extend care beyond those boundaries, even when doing so asks something of us (Batson et al., 2002; Uzefovsky & Knafo-Noam, 2019).

Though many believe the AIDS crisis has passed, it is far from over. In the United States, over one million people live with HIV. Disparities persist: infection rates remain highest among Black and Latino communities, men who have sex with men, transgender people, and those living in poverty, especially in the Deep South (CDC, 2020). Ending the epidemic requires more than medicine; it demands the dismantling of stigma and shame.

Fear still shapes society’s response to disease. To respond with compassion, we must examine the meanings we assign to illness, whether we view it as sin, contagion, or punishment, and choose instead to see humanity. The long-term survivors of HIV/AIDS offer enduring lessons in resilience, empathy, and community care.

As COVID-19 has reminded us, pandemics reveal the fractures in our social fabric. Like HIV, it has disproportionately affected those already marginalized: people living in poverty, people of color, the disabled, and the elderly. These crises expose deep inequalities, but also reveal the possibility of compassion as a form of resistance.

Anthropologist Margaret Mead once asked her students, “What is the earliest sign of civilization?” Some guessed tools or clay pots. “No,” she said. “It is a healed femur.” In primitive societies, a broken leg meant death, unless someone cared enough to tend the injured, bring food, and protect them until healing occurred. “Savage societies could not afford such pity,” she explained. The evidence of compassion, Mead concluded, is the first sign of civilization (as cited in Brand, 1980, p. 68).

Four decades into the AIDS epidemic, that remains true: our humanity is measured by how we care for one another, especially for those whom society has left behind.

References

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Lyons, L. (1947, January 30). Loose-leaf notebook. The Washington Post, p. 9.

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Randolph, E. (1989, September 24). AIDS and obituaries. Chicago Tribune. https://www.chicagotribune.com/news/ct-xpm-1989-09-24-8901150905-story.html

Slovic, P., Zionts, D., Woods, A. K., Goodman, R., & Jinks, D. (2013). Psychic numbing and mass atrocity. In E. Shafir (Ed.), The behavioral foundations of public policy (pp. 126–142). Princeton University Press.

UNAIDS. (2020). Global HIV & AIDS statistics — 2020 fact sheet. https://www.unaids.org/en/resources/fact-sheet

Uzefovsky, F., & Knafo-Noam, A. (2019). Empathy development throughout the lifespan. In U. Goswami (Ed.), Social cognition development across the life span (pp. 89–115). Routledge.(Cambridge, MA: MIT Press, 1988), 3–18.