Compassion & HIV
By Joseph Golden, MA
In a world with so much hurt and suffering, compassion has the power to unite and heal. Beginning with our family circle and our friends and expanding into our communities and the world, kindness can open our hearts to a nobler way of living. As the world is overwhelmed by the deadly coronavirus pandemic, 2021 marks 40 years since HIV/AIDS was first identified in the United States. Nearly 33 million people have died of AIDS-related illnesses throughout the world since 1981, at least 3 million of them in South Africa alone.[1] There is still no vaccine or a cure. Some have examined the AIDS pandemic for guidance on how to survive a time of mass fatality, panic, fear, and discrimination, as few diseases have inspired as much anxiety as HIV/AIDS. Scholars and activists have also begun to focus on its outpouring of successes from political activism, creativity in the arts, advances in LGBTQ+ rights, reshaping doctor-patient relations, the enhanced value of nursing, volunteerism, and compassion.[2]
There has been fantastic progress in response to HIV during the past decades. However, globally, stigma, discrimination, and inequality continue to make people vulnerable to HIV and deters their access to HIV prevention, treatment, and care.[3] Since the beginning, the AIDS epidemic challenged many individuals’ sense of compassion, as the AIDS response challenges some sensitive issues: race, sex, gender, and social inequality, sex work, and drug use, which have all have demonstrated to be immense barriers to the government and social responses to the epidemic. In parts of the globe, widespread beliefs persist that the disease is easily spread through everyday activities and that everyone with HIV/AIDS should be shunned.[4] Shame-related, HIV stigma was and has remained strongly associated with the belief that the disease is a punishment from God or that people living with HIV/AIDS have not followed the Word of God.[5] People with HIV/AIDS have been fired from their jobs, evicted from their homes, and faced isolation from family members, relatives, friends, and society.
From a medical perspective, HIV is simply a chronic viral infection. However, HIV/AIDS is a much more complex illness with many psychological and social issues and an overwhelming sense of powerlessness, vulnerability, and stigma. Most people are more informed about HIV today and think the stigma has lessened. However, stigma is about much more than fear of casual infection. It is about having our moral value judged about being disregarded and “othered.” Goffman (1963) notes that when people are marked as different, it means they are reduced in our minds from a whole and acceptable person to a “tainted, discounted one” (3). Because the stigmatized person is then regarded as “not quite human” (3), it is easier to discriminate.[6]
During peak AIDS hysteria in the late 1980s, there was a continuing fear of transmission, prodded by reports in the media, and insufficient educational efforts and confusion about the facts. With so few answers, people and communities would speculate, and as a result, panic and rumors started to spread. People with AIDS were often met with anger, anxiety, and a lack of empathy. In 1985, a Los Angeles Times poll found that 50% of the adults surveyed supported a quarantine of people with AIDS, 48% would approve of identity cards for people with HIV, 15% favored tattooing AIDS sufferers.[7] Many with the disease found themselves without homes due to unemployment, rising medical costs, and evictions. Stigma and shame kept many from seeking medical care. Some medical professionals refused to provide treatment to those with AIDS symptoms, and many funeral homes refused to accept bodies for burial.[8] Obituaries frequently did not mention that the person died of AIDS, or an AIDS-related disease, as family members were too embarrassed to admit this about their loved one.[9] Mourning AIDS losses has not always been an easy task for many grieving. The LBTQ+ community faced additional obstacles when mourning; the surviving partner may not have cared for their dying loved one or participated fully in the planning and executing of their funeral performed by the deceased’s biological family. These situations can create the grieving what Kenneth J. Doka (2008) calls “disenfranchised grief” or grief that results when a person suffers a significant loss, and there is no social acknowledgment that the person has a right to grieve or receive social sympathy or support. [10]
Since the start of the AIDS crisis, communities have played a vital role in enabling and empowering marginalized people touched by the epidemic. The first responses came, almost unanimously, from affected persons, their friends, families, and community members, disheartened by the lack of an empathetic response from the government, most of whom lacked formal medical, legal, public health, or healthcare systems training.[11] New York City’s Gay Men’s Health Crisis co-founder Rodger McFarlane told The New York Times in 1983, “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.”[12] Beyond providing much-needed emotional support, local community members were instrumental in raising awareness about AIDS and advocating for a more timely and well-funded governmental response to the epidemic.
In 1988, Friedland explored what he believed were the three reasons why there had been such a lack of compassion toward PLWHA. He saw the fear of transmission, opinions of people’s social worth (particularly LGBTQ+s and drug consumers), and the nature of plagues in our psyches and from the history of plagues and epidemics as the underlying causes.[13] Cox (1988) also wrote about the role of compassion in the early days of the disease and the emotional and ethical challenges for caregivers.[14] Since many patients with AIDS did not have a supportive family or friends to assist with care, the health care facility became the patient’s home, and health care workers became the patient’s family. Then, caregivers had a unique opportunity to affirm the dignity and goodness of AIDS patients by assuring them confidentiality and treating them with compassionate care.
Other factors contribute to society’s lack of empathy towards those most in need. More than one million people in the United States live with HIV [15] but providing data, facts, and figures often leaves many people overwhelmed and disconnected. As Stalin (1947) once declared, “If only one man dies of hunger, that is a tragedy. If millions die, that’s only statistics.”[16] In other words, when we see numerous victims, we suppress our emotions for fear of being psychologically depleted.[17] Certain studies indicate that we become less adept at empathy as adulthood develops. Since compassion necessitates cognitive skills, such as paying attention, handling information, and holding that information in memory, these resources usually become scarcer with age.[18] Our hearts tend to be selfish, suggesting an evolutionary drive. It’s usually directed toward those we care about the most — our children, relatives, and others similar to ourselves.[19] We empathize more with our in-group, those who share our moral values and political beliefs.[20] Compassion may fail to lead to action because it often demands some self-sacrifice.[21]
Today, many people feel the AIDS crisis has passed, but it would be wrong to think the epidemic is under control. While some people have profited a great deal by having a high level of access and education, other people live in a “deep zone of stigma,” [22] disproportionately affecting racial/ethnic minorities and the poor in communities already struggling with many social and economic challenges, such as poverty, substance use, homelessness. The newest estimates show that effective HIV prevention and treatment are not sufficiently reaching those who could most benefit from them. Certain groups such as men who have sex with men (MSM), African Americans, and Hispanics/Latinos, transgender persons continue to be disproportionately affected. Furthermore, the highest rates of new HIV infection persist in the Deep South.[23] Pushing those infected into treatment and helping them stay the course will require active, creative campaigns to help remove the stigma, shame, and fear of diagnosis.
HIV/AIDS conjures powerful emotions, often expressions of fear. We must recognize and resolve these personal feelings. One way to devise an empathetic response to people living with HIV/AIDS is to realize the meanings that we give to the disease, implications that shape our relational behaviors. Limited connotations — that HIV/AIDS constitutes death, sin, infection, guilt, or crime can free us to find other definitions that inspire compassion.
Pandemics hold society in its grip. Much like HIV, anxiety is an unavoidable response to the COVID-19 pandemic, including fear of infection, grief at the loss of loved ones, and depression related to loss of employment and livelihood. Like HIV/AIDS, the COVID pandemic affects those in our society trying to survive poverty, fear, retriggering of trauma, and other mental health difficulties, with ongoing consequences of ableism, ageism, medical racism, and the lack of structural care. We need to continually adjust and learn from our community members who are sick and disabled, especially those marginalized by ableism, ageism, racism, gender discrimination, and those who navigate strict boundaries of care because of systemic shortcomings. Too many lives are discounted, are judged as high risk or disposable. These attitudes have long been the model for society’s response to a health crisis, for blaming sick and disabled people and anyone who is “other.” We all are susceptible to the body’s limitations, and COVID reminds us of this reality. When the COVID crisis is over, someday another situation will arise, setting a similar health emergency. Perhaps the greatest lessons we can learn from the Long-Term-Survivors (LTS) of HIV/AIDS are their ongoing examples of perseverance, empathy, and community.
The cultural anthropologist Margaret Mead once asked during a lecture, “What is the earliest sign of civilization?” Clay pots? Tools? Agriculture? No, she claimed. Evidence of the earliest true civilization is a healed femur, which is a leg bone below the knee. She explained that no healed femurs are found in savage societies — which is “the survival of the fittest.” A healed femur shows that someone took care of the injured person, bringing them food, hunting, and gathering for that person until the leg healed. “Savage societies could not afford such pity” (68). The evidence of compassion, she said, is the first sign of civilization.[24]
[1]UNAIDS. Global HIV & AIDS Statistics 2020 Fact Sheet (2020) Retrieved from: https://www.unaids.org/en/resources/fact-sheet
[2] Samuel K. Cohn, Jr., Epidemics: Hate and compassion from the plague of Athens to AIDS. Oxford Scholarship Online, 2018.
[3] Kontomanolis, E. N., Michalopoulos, S., Gkasdaris, G., & Fasoulakis, Z. “The social stigma of HIV-AIDS: society’s role.” HIV/AIDS 9, (2017): 111–118. doi:10.2147/HIV.S129992. Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5490433/
[4] Kontomanolis, E. N., Michalopoulos, S., Gkasdaris, G., & Fasoulakis, Z. “The social stigma of HIV-AIDS: society’s role.” HIV/AIDS 9, (2017): 111–118. doi:10.2147/HIV.S129992. Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5490433/
[5] Olson, R.R., Cadge, W., Harrison, J.T. “Religion and public opinion about same-sex marriage.” Social Science Quarterly, 87. Schulte and Battle, (2006): pp. 340–360.
[6] Goffman, E. Stigma: Notes on the Management of Spoiled Identity. New York: Simon & Schuster, Inc, 1963.
[7] New York Times. “Poll Indicates Majority Favor Quarantine for AIDS Victims.” (1985 Dec.20). Retrieved from: https://www.nytimes.com/1985/12/20/us/poll-indicates-majority-favor-quarantine-for-aids-victims.html
[8] Shilts, Randy. And the Band Played On: Politics, People, and the AIDS Epidemic. New York: St. Martin’s Press, 2012.
[9] Randolph, Eleanor. “AIDS and Obituaries.” Chicago Tribune, Sept. 24, 1989. https://www.chicagotribune.com/news/ct-xpm-1989-09-24-8901150905-story.html
[10] Doka, Kenneth. Disenfranchised grief in historical and cultural perspective. In M. S. Stroebe, R. O. Hansson, H. Schut, & W. Stroebe (Eds.), Handbook of bereavement research and practice: Advances in theory and intervention (2008: p. 223–240). American Psychological Association. https://doi.org/10.1037/14498-011
[11] Chillag, K., Bartholow, K., Cordeiro, J., Swanson, S., Patterson, J., Stebbins, S., Woodside, C., Sy, F., (2002) Factors affecting the delivery of HIV/AIDS prevention programs by community-based organizations. AIDS Educ Prev. 2002 Jun;14 (3 Suppl A): 27–37.
[12] Hevesimay, D. “Rodger McFarlane, Who Led AIDS-Related Groups, Dies at 54.” New York Times, May18,2009: https://www.nytimes.com/2009/05/19/nyregion/19mcfarlane.html
[13] Friedland, Gerald. “AIDS and Compassion.” JAMA.259(19);1988:2898–2899. doi:10.1001/jama.1988.03720190066034.
[14] Cox, L. E. “Social support, medication compliance, and HIV/AIDS.” Social Work in Health Care, 35, (2002): 425–460.
[15] Centers for Disease Control and Prevention. “Estimated HIV incidence and prevalence in the United States.” HIV Surveillance Supplemental Report 2020;25(№1); 2020. Retrieved from: https://www.cdc.gov/hiv/pdf/library/reports/surveillance/cdc-hiv-surveillance-supplemental-report-vol-25-1.pdf
[16] Lyons, Leonard. “Loose-Leaf Notebook by Leonard Lyons.” Washington Post, Washington, D.C (1947 January 30), p.9.
[17] Slovic, Paul and Zionts, David and Woods, Andrew Keane and Goodman, Ryan and Jinks, Derek. Psychic Numbing and Mass Atrocity (April 14, 2011). In E. Shafir (Ed.), The behavioral foundations of public policy (pp. 126–142). NJ: Princeton University Press, 2013., NYU School of Law, Public Law Research Paper №11–56, Retrieved from: https://ssrn.com/abstract=1809951
[18] Uzefovsky, Florina & Knafo-Noam, Ariel. “Empathy development throughout the lifespan.” Social Cognition Development Across the Life Span. Routledge, (2019): pp.89–115.
[19] Decety Jean, Bartal Inbal Ben-Ami, Uzefovsky Florina and Knafo-Noam Ariel. “Empathy as a driver of prosocial behaviour: highly conserved neurobehavioural mechanisms across species.” Royal Society Publishing (2016). http://doi.org/10.1098/rstb.2015.0077
[20] Simas, Elizabeth N., et al. “How Empathic Concern Fuels Political Polarization.” American Political Science Review, vol. 114, no. 1, (2020): pp. 258–269, doi:10.1017/S0003055419000534.
[21] Batson, C. Daniel, et al. “Empathy and altruism.” The Oxford handbook of hypo-egoic phenomena. Oxford University Press: (2002). pp.161–174.
[22] Dubin, S. “If We Do This Right’ Maybe H.I.V. Will Be Forgotten.” The New York Times, June 12, 2019: p.1 Retrieved from: https://www.nytimes.com/2019/06/12/health/demetre-daskalakis-hiv-aids.html
[23] Centers for Disease Control and Prevention. (2020). Estimated HIV incidence and prevalence in the United States. HIV Surveillance Supplemental Report 2020;25(№1). Retrieved from: https://www.cdc.gov/hiv/pdf/library/reports/surveillance/cdc-hiv-surveillance-supplemental-report-vol-25-1.pdf
[24] Brand, Paul. Fearfully and Wonderfully Made. Grand Rapids, Mi.: Zondervan, 1980.
References
Batson, C. Daniel, Nadia Ahmad, David A. Lishner, J. Tsang, C. R. Snyder, and S. J. Lopez. “Empathy and altruism.” The Oxford handbook of hypo-egoic phenomena (2002): 161–174.
Brand, Paul. Fearfully and Wonderfully Made. Grand Rapids, Mi.: Zondervan, 1980.
Centers for Disease Control and Prevention. (2020). Estimated HIV incidence and prevalence in the United States. HIV Surveillance Supplemental Report 2020;25(№1). Retrieved from: https://www.cdc.gov/hiv/pdf/library/reports/surveillance/cdc-hiv-surveillance-supplemental-report-vol-25-1.pdf
Centers for Disease Control and Prevention. “Estimated HIV incidence and prevalence in the United States.” HIV Surveillance Supplemental Report 2020;25(№1); 2020. Retrieved from: https://www.cdc.gov/hiv/pdf/library/reports/surveillance/cdc-hiv-surveillance-supplemental-report-vol-25-1.pdf
Chillag, K., Bartholow, K., Cordeiro, J., Swanson, S., Patterson, J., Stebbins, S., Woodside, C., Sy, F., (2002) Factors affecting the delivery of HIV/AIDS prevention programs by community-based organizations. AIDS Educ Prev. 2002 Jun;14 (3 Suppl A): 27–37.
Cox, L. E. “Social support, medication compliance, and HIV/AIDS.” Social Work in Health Care, 35, (2002): 425–460.
Decety Jean, Bartal Inbal Ben-Ami, Uzefovsky Florina, and Knafo-Noam Ariel. “Empathy as a driver of prosocial behaviour: highly conserved neurobehavioural mechanisms across species.” Royal Society Publishing (2016). Retrieved from: http://doi.org/10.1098/rstb.2015.0077
Doka, Kenneth. Disenfranchised grief in historical and cultural perspective. In M. S. Stroebe, R. O. Hansson, H. Schut, & W. Stroebe (Eds.), Handbook of bereavement research and practice: Advances in theory and intervention (2008: p. 223–240). American Psychological Association. Retrieved from: https://doi.org/10.1037/14498-011
Dubin, S. “If We Do This Right’ Maybe H.I.V. Will Be Forgotten.” The New York Times, June 12, 2019: p.1 Retrieved from: https://www.nytimes.com/2019/06/12/health/demetre-daskalakis-hiv-aids.html
Friedland, Gerald. “AIDS and Compassion.” JAMA.259(19);1988:2898–2899. doi:10.1001/jama.1988.03720190066034.
Hetland L., Winner E., Veenema S., Sheridan K. (2007). Studio Thinking: The Real Benefits of Visual Arts Education. New York: Teachers College Press.
Hevesimay, D. (2009) Rodger McFarlane, Who Led AIDS-Related Groups, Dies at 54. New York Times, May 18, 2009. Retrieved from: https://www.nytimes.com/2009/05/19/nyregion/19mcfarlane.html
Hevesimay, D. “Rodger McFarlane, Who Led AIDS-Related Groups, Dies at 54.” New York Times, May 18, 2009: https://www.nytimes.com/2009/05/19/nyregion/19mcfarlane.html
Kontomanolis, E. N., Michalopoulos, S., Gkasdaris, G., & Fasoulakis, Z. “The social stigma of HIV-AIDS: society’s role.” HIV/AIDS 9, (2017): 111–118. doi:10.2147/HIV.S129992. Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5490433/
Lyons, Leonard. “Loose-Leaf Notebook by Leonard Lyons.” Washington Post, Washington, D.C (1947 January 30): p.9.
New York Times. “Poll Indicates Majority Favor Quarantine for AIDS Victims.” (1985 Dec.20). Retrieved from: https://www.nytimes.com/1985/12/20/us/poll-indicates-majority-favor-quarantine-for-aids-victims.html
Randolph, Eleanor. “AIDS and Obituaries.” Chicago Tribune, September 24, 1989. Retrieved from: https://www.chicagotribune.com/news/ct-xpm-1989-09-24-8901150905-story.html
Samuel K. Cohn, Jr., Epidemics: Hate and compassion from the plague of Athens to AIDS. Oxford Scholarship Online, 2018.
Shilts, Randy. And the Band Played On: Politics, People, and the AIDS Epidemic. New York: St. Martin’s Press, 2012.
Simas, Elizabeth N., et al. “How Empathic Concern Fuels Political Polarization.” American Political Science Review, vol. 114, no. 1, (2020): pp. 258–269, doi:10.1017/S0003055419000534.
Slovic, Paul, and Zionts, David and Woods, Andrew Keane and Goodman, Ryan and Jinks, Derek. “Psychic Numbing and Mass Atrocity” (April 14, 2011). In E. Shafir (Ed.), The behavioral foundations of public policy (pp. 126–142). NJ: Princeton University Press, 2013., NYU School of Law, Public Law Research Paper №11–56, Retrieved from: https://ssrn.com/abstract=1809951
UNAIDS. Global HIV & AIDS Statistics 2020 Fact Sheet (2020) Retrieved from: https://www.unaids.org/en/resources/fact-sheet
Uzefovsky, Florina & Knafo-Noam, Ariel. “Empathy development throughout the lifespan.” Social Cognition Development Across the Life Span. Routledge, (2019): pp.89–115.
About the Author
Joseph Golden, M.A., aims to address the social determinants of health that continue to fuel HIV infection rates and prevent people from accessing care and treatment. His research focuses on how artistic expression offers healing and resilience for the individual when addressing trauma, how schools and community organizations can provide structure, support, and coping mechanisms when individuals are experiencing trauma, disease, and disability, and how sharing stories as long-term survivors of HIV/AIDS can lead to an empathetic understanding of all illness experiences. Contact: joegolden7500@gmail.com
