Perspectives on the AIDS Epidemic: Culture and Society

The Plague of Our Time: Societal Responses to AIDS

http://www.thebody.com/encyclo/culture_overview.html

Nearly every major infectious disease has created not one but two epidemics: the illness itself and society's reaction to it. Following initial denial there is hysteria and a search for a scapegoat. The fear of infection and the ignorance of its cause have often led to uncaring and even barbaric practices.

The Black Death of the Middle Ages killed more than 500 people per day at its peak. The central concern of many at that time was not to provide care or devise a cure, but rather to determine how deep to dig the graves in order to prevent further spread of the disease. Historically, lepers were cast from society and isolated; they were prohibited from touching their own children. In the 1830s, cholera was considered the punishment for people unwilling to change their lives, such as the poor and those thought to be immoral. In the early 20th century, polio in America was believed to be caused by Italian immigrants, and the influenza pandemic of 1918-1919 was blamed by some on the Irish.

It took centuries to understand how the plague was spread, decades to identify its cause and develop a cure. Just over 15 years ago, we first identified what has now become the epidemic of AIDS, and in that short time we have gained knowledge of the causative agent, understanding of the manner of transmission, and reliable tests for infection. Fortunately, pioneering research has yielded many treatment options. Yet, even with all of our scientific technology, and despite the high level of education in the developed world, we have not advanced very far in our social responses to medical crises. At various stages of the AIDS epidemic, we also have engaged in denial, hysteria, and the search for a scapegoat.

Early on, it was difficult to capture the attention of either the public at large or political leaders, because AIDS seemed like "someone else's disease." At the highest level of the U.S. government, there was remarkable inaction by the administrations of Presidents Ronald Reagan and George Bush, demonstrating a disdain for those infected and an apathy toward their plight. At the same time, the educational needs of the public were largely ignored. This climate gave rise to frightening theories of genocide and government-sponsored germ warfare. There was a call for the control of AIDS chiefly by focusing on its most prominent victims. And it was conveniently believed by some that changes in personal behavior were unnecessary to curb the spread of AIDS; certainly heterosexuals need not worry about this disease of gay men. Gay communities were outraged that the disease was not regarded like any other public health crisis affecting society.

The anxiety first felt in the gay and hemophiliac populations later spread to the general public when it was disclosed that AIDS had affected celebrities with whom they more closely identified. There was also a growing awareness that AIDS was a disease of unknown origin with a prolonged incubation period, allowing apparently healthy people to unknowingly transmit the infection. There were few drugs that seemed even partially effective and no cure or vaccine. The illness appeared to be universally fatal. In addition, some politicians fueled this growing anxiety with calls for mandatory testing in order to isolate those infected. The evident connection with sexuality added a level of discomfort to the fear.

The scapegoat for this disease was quickly identified by some religious leaders who proclaimed AIDS as God's retribution for the sinful acts of homosexuals. A distinction was made concerning those who were "innocently" infected and those who were not. On an international level, African countries felt accused by the western nations as the source of HIV. This unfortunately led to a blanket denial by some African countries that AIDS even existed within their borders, leading to a tragic delay of several years in responding to this rapidly growing menace.

From health care workers sliding trays of food into the doorways of AIDS patients to Washington, D.C., police officers wearing elbow-length rubber gloves when dealing with activists at the Third International AIDS Conference, stories of irrational behavior proliferated, even in the face of firmly established knowledge about transmission. As recently as 1995, U.S. Secret Service agents at the White House felt the need to wear gloves while doing a security check of a group of gay and lesbian visitors invited by President Bill Clinton.

Although calls for the isolation of patients never resulted in a national policy in the United States, many people living with HIV and AIDS have been shunned by their own families, co-workers and acquaintances, and even by some health professionals. One of the most egregious examples of this shunning was illustrated in a newspaper photograph of an infected baby's crib in a hospital with a sign that read, "Do not touch!" Young heroes with AIDS were living symbols of all those who had suffered not only the effects of HIV, but the vicious rejection by their communities. Clearly, these responses are not very different from those of ancient times.

Yet despite the bigotry, denial, ignorance, and apathy, AIDS became a catalyst in the communities hardest hit -- rallying people to fight both the disease and the societal ills that intensified their struggle. A number of people found an inner strength that helped them to care for those infected with HIV and to create an atmosphere of acceptance and compassion. Some became activists to create change in governmental policies and society's attitudes. A sense of pride flourished within the lesbian and gay community as a result of the outstanding work of grassroots organizations and the hundreds of thousands of hours of volunteer service by individuals across the United States. This dedication (in the face of the government's response) led to a sense of "ownership" of the disease.

Over the past decade and a half, the epidemic, those infected, their caregivers, and the institutions have changed, reflecting the diversity of America at large. The disease is moving from an acute care inpatient problem to a chronic outpatient disease. Service groups have become multimillion-dollar organizations, requiring individuals trained in finance, development, and general administration. AIDS organizations number in the thousands.

As we move into the twenty-first century, we cannot allow ourselves to slide into apathy and complacency, taking for granted these monumental gains. Poverty, racism, homophobia, and the lack of quality education and health care will continue to threaten our ability to deal effectively with AIDS, as well as all future epidemics. We must seize this opportunity to reassess our humanity and improve the total health of our society.

Mervyn Silverman