Overview to Social Change Interview: The AIDS Epidemic

Biography:

Michael Cohen is a 63-year-old attorney, who lost his father, brother, and mother during the height of the AIDS epidemic. Between the age of 26-30 Michael lost his entire family and lived with the fear that he may be infected as well. While his story is deeply personal, moving and even inspirational, it also provides an important lesson about the response to a worldwide pandemic prior to COVID, the harm caused by panic and fear, the stigma of the virus, the mobilization of communities during scary and uncertain times and, of course, human resilience. Mr. Cohen comes from a prominent family from Washington, D.C. His mother and father enjoyed a 30+ year marriage, were owners of a well-known national Jewelry chain, his brother was in medical school, and Michael was in law school at the time this tragedy unfolded.

While having a family member receive a terminal diagnosis of any kind is life changing, to have 3 family members, one after the other, test positive for a previously unknown and ruthless disease is a tragedy of biblical proportion. As Michael learned that his entire family would die within a handful of years, die young and die painfully, he also worried if he was next. After all, in the 1980’s it was unclear how AIDS was transmitted.

Michael hardly has the background of someone that would endure such a loss, after all the government and medical professionals explained to the world AIDS affected the gay community and IV drug users with a small percentage of the deaths coming from blood transfusions. While this was not a lie, it was not the whole truth and families such as Michael’s were largely ignored in the medical community since they were not considered high risk. Michael feels, understandably, that his family’s diagnosis was scarier to the general population than the typical AIDS patient. Like other prejudices, such as homophobia, sexism, and classism – the AIDS virus caused people to try to distinguish themselves from the high-risk population. Michael’s family simply did not fit that mold and destroyed that narrative. This increased people’s fears and resulted in friends and family distancing themselves from Michael and his family.

While Michael has managed to have a full, successful, and meaningful life, he laments doing it alone. Michael was the youngest in his family at the time of the last death, just 30 years old, and as he describes it, he was “pushed right up to the front of the line” with no elders to guide him or cheer him on.

Introduction to Interview:

Last month I had the opportunity to interview Michael regarding the unthinkable loss of losing his entire family to the AIDS virus in a few short years. His story is particularly poignant because within a year or so after he buried his entire family, AIDS became a treatable virus and others diagnosed during his family’s life, such as Magic Johnson, are still alive and thriving today. This is something that Michael accepts this reality and says he understands the “the delicate timing in life.” He is elated that others do not have to suffer with the virus and with loss as so many did just a few decades ago.

In preparation for the interview and in crafting the questions, I researched the early years of the AIDS epidemic in America. In 1985, when Mr. Cohen’s father was diagnosed, a great concern was the lack of a test to identify individuals who carried the virus. The first HIV antibody test, developed in 1985, was

designed to screen blood products, not to diagnose AIDS. Mr. Cohen recalls this time clearly and the frustration with having to obtain a diagnosis via a process of elimination. The article, Human Immunodeficiency Virus Diagnostic Testing: 30 Years of Evolution by Thomas S. Alexander (2016) also confirms that the testing resulted in many false positive and inconclusive results, as was the case for Mr. Cohen’s mother.

Further, in the article published by the American Behavioral Scientist, AIDS Stigma and Sexual Prejudice, detailing the research conducted by Gregory Herek and John Capitanio, it is clear that the general population blamed HIV+ individuals for their plight. The article states that this blame is even greater for gay or bisexual men than for others that contract the disease via heterosexual sex or from intravenous drug use. Mr. Cohen recounts his surprise to learn that his father and brother had “secret lives” and were bisexual but that others assumed they had a blood transfusion because their outward persona was that of married, heterosexual men. It appears that only his mother garnered any sympathy among her friends, family, and acquaintances.

Since Mr. Cohen is the sole survivor in his family which was decimated by the AIDS virus, yet has lived and thrived for decades after his loss, I researched the psychology of being such a survivor. I learned that Dr. John L. Martin of Columbia University’s School of Public Health in New York had dubbed AIDs related bereavement “a secondary epidemic of AIDS”. A symptom of this phenomena is depression and “psychic numbing.” Mr. Cohen offers that he walked through life in a fog after the diagnoses and deaths, clearly consistent with description. Mr. Cohen also has the added trauma of AIDS uncovering long buried family secrets and a realization that much of what he knew about his life and family, was simply not true.

 

 

Bibliography:

 

Alexander, Thomas S. “Human Immunodeficiency Virus Diagnostic Testing: 30 Years of Evolution.” Clinical and Vaccine Immunology, vol. 23, no. 4, 2 Mar. 2016, pp. 249–253, cvi.asm.org/content/23/4/249, 10.1128/cvi.00053-16. Accessed 3 May 2019.

 

“Survivor’s Syndrome: AIDS Takes Toll on Ones Left Behind.” Los Angeles Times, 6 May 1989, www.latimes.com/archives/la-xpm-1989-05-06-mn-2084-story.html.

HEREK, GREGORY M. “AIDS and Stigma.” American Behavioral Scientist, vol. 42, no. 7, Apr. 1999, pp. 1106–1116, 10.1177/0002764299042007004.