Authored by Jesse Milan, Jr., JD , 2004 (with updated statistical data and references)
HIV/AIDS stigma is pervasive and persistent. Its ways of enduring are not well understood, though there is a growing body of evidence documenting the stigma's tragic impact on the public's health. Less understood is the role the workplace plays in perpetuating the stigma long associated with HIV/AIDS. Yet every day, more people with HIV/AIDS live longer and healthier lives as a result of advanced treatments. Every day, more people want to understand and acknowledge their personal connections to friends and family living with HIV/AIDS. The increasing presence of all these factors in the workforce demands that employers and employees alike understand and address HIV/AIDS stigma in the workplace.
HIV/AIDS stigma refers to unfavorable attitudes, beliefs, and policies directed toward People perceived to have HIV/AIDS, as well as their loved ones, associates, social groups ,and communities.
This definition is consistent with the understanding of social stigma advanced by anthropologist Erving Goffman. Negative opinions, attitudes, and beliefs about those infected with HIV/AIDS, as well as those associated with people with HIV/AIDS, are deeply rooted in moral assessments, blame about the ways HIV/AIDS is transmitted, and continuing bias against the people the disease has most affected.
These prejudices concern many different types of people found in the modern workplace. Population groups that have been especially associated with HIV/AIDS include the following:
Some of these categories are obvious in the workplace, such as race and gender. Some are not discussed or are suppressed, such as sexuality and substance abuse. Yet all of these groups have been unfavorably marked as a source or cause of HIV/AIDS. As these groups remain publicly associated with the epidemic, any individual who falls into any of these categories, who is suspected of being in one of them, or who associates with people in these categories is subject to being stigmatized—whether or not he or she actually has HIV/AIDS. These prejudices are often exacerbated by continuing fears and understandings among employers and employees about the HIV/AIDS virus, contagion, illness, and death , as well as by continuing public opinion that people with HIV/AIDS "have gotten what they deserve. Whether separately or jointly, these biases and fears define HIV/AIDS stigma.
Stigma is manifested in many forms. Some forms may be very subtle; some forms shockingly overt. All forms of stigma may be illegal, particularly when they create discriminatory workplace environments or result in discriminatory actions, such as firing or rejection.
Any manifestation of stigma can be painful, regardless of how it is communicated or perceived. Stigma can take the form of blame, rejection, exclusion, repulsion, ostracism and degradation. Scribbling "AIDS Carrier" on an employee's locker sends a clear stigmatizing message, as does physical violence against those suspected of being infected. Gossiping in the employee lunchroom about someone who has sought an HIV/AIDS test is stigmatizing. Not inviting a person known to have had an HIV/AIDS test to join you for a coffee break, fearing changing clothes next to that person, or secretly speculating about who she or he may have infected are also forms of workplace stigma. So, too, is the silence of labor leaders and management who know of stigmatizing acts or attitudes in their workplace.
People living with HIV/AIDS, as well as people close to them, are continually aware of and concerned about stigma, whether it is reported or not. Productive people living with HIV/AIDS often fear being perceived by coworkers as getting "special treatment" when they are excused to attend needed regular medical appointments. Employees raising grandchildren orphaned by AIDS are fearful of sharing with colleagues how their son or daughter died. Even Magic Johnson was concerned about the stigmatizing reactions of his teammates. For employees suffering under the pervasive cloud of HIV/AIDS stigma, these kinds of fears and perceptions are real.
The absence of positive approaches to HIV/AIDS also promotes stigma. Not having a policy prohibiting discrimination based on HIV/AIDS sends the wrong message that HIV/AIDS stigma is acceptable in the workplace. Employee education and wellness programs that do not discuss HIV/AIDS, or that fail to encourage employees to know their personal HIV/AIDS status, implicitly suggest that having or knowing about HIV/AIDS is bad. By not affirmatively addressing or supporting educational programs and healthcare initiatives concerning HIV/AIDS, workplaces allow stigma to flourish.
While stigma includes the attitudes and beliefs of "devaluing, discounting, and discrediting," for people related to HIV/AIDS as described above, discrimination often follows stigma and results in "unfair or unjust treatment of an individual based on his or her real or perceived HIV/AIDS status." These unfair and illegal workplace actions can include inappropriate firing, loss of insurance, wrongful transfers, and denials of promotions, among others. However, stigma can also create an atmosphere that implies that qualified people with HIV/AIDS are not welcome in the workplace or will not be treated fairly. Such atmospheres are equally discriminatory when they perpetuate beliefs or perceptions that qualified people of different sexes, sexual orientations racial, ethnic, or religious backgrounds, or ages are not welcome in the workplace.
Together, stigma and discrimination constitute one of the greatest barriers to dealing effectively with the epidemic. They discourage governments from acknowledging or taking timely action against AIDS. They deter individuals from finding out about their HIV status, and they inhibit those who know they are infected from sharing their diagnosis and taking action to protect others and from seeking treatment and care for themselves.
Independently and together, denial, hopelessness, and shame—all stemming from HIV/AIDS stigma—are powerful social and emotional obstacles that discourage people from knowing their status, from seeking treatment and care, and from protecting themselves and others against infection. ,
The fear of losing one's job, or the fear of being treated unfairly by one's employer, supervisor, or shop steward are reinforced easily by stigma, negative attitudes, and lack of workplace policies. These fears can be as strong as the fears of being rejected by one's own family, spouse, or friends. Such stigma-related fears can generate intense feelings of shame, hopelessness, and denial. That combination can be life threatening for people who do not know, who should know, or who want to know their HIV/AIDS status. And it is especially life threatening to those who do know their status, but who are afraid that seeking medical care may result in employer misperceptions of excessive absenteeism, illness, or loss of productivity.
The undeniable results of stigma-induced denial, shame, and hopelessness are the mounting numbers of new HIV infections and AIDS deaths in America and around the world. The Centers for Disease Control and Prevention (CDC) estimates that,an estimated 1,039,000 to 1,185,000 persons in the United States were living with HIV/AIDS (up from the 850,000 to 950,000 previously reported), with approximately 252,000-320,000 persons were unaware of their HIV infection. In addition, forty-two to fifty-nine percent (42% -59%) of people living with HIV/AIDS are not in regular HIV care. The CDC also estimates that 56,300 new HIV infections occurred in the United States in 2006.
Not surprisingly, the people who wait the longest to know their HIV/AIDS status and to start treatment develop AIDS-defining illnesses the fastest. New infections and delays in seeking treatment are devastating impacts of HIV/AIDS stigma on the public's health.
Although businesses and labor unions are not responsible for the attitudes and beliefs of their employees and members, they are responsible for ensuring that the workplace is a fair and effective environment that fosters productivity and creativity. Workplace policies and programs that address HIV/AIDS can reduce the stigma of the disease and create positive environments where people living with, or affected by, HIV/AIDS can be productive, contributing members of the workforce and their communities.
Policies prohibiting discrimination based on HIV/AIDS send clear messages that a) unfair treatment must not be instigated in the workplace and b) unfair treatment will not be tolerated in the workplace. All stigmatizing and derogatory statements and actions are covered by nondiscrimination workplace policies. Creating, disseminating, and posting such policies creates a baseline expectation of the kind of attitude about HIV/AIDS that is acceptable in the workplace. However, policies will have no effect if management and labor leaders do not demonstrate through their own words and actions their attitudes about workplace HIV/AIDS stigma. They must be given the tools, resources, training and support necessary to respond appropriately to any evidence of workplace HIV/AIDS stigma. They should also be charged to model appropriate workplace attitudes and behaviors about HIV/AIDS.
Policies must go hand-in-hand with programs. Managers and labor leaders are people, too. Like their employees and members, they may harbor their own stigmatizing perceptions, misconceptions, or opinions about HIV/AIDS and the people affected by it. These can be overcome by training. Learning how the virus works and how individuals of all backgrounds and ages can be at risk is eye-opening and potentially life-changing information. Many managers, labor leaders, and employees may never have had the opportunity to attend a basic HIV/AIDS education program, especially if they left or finished school before such programs began. Training about HIV/AIDS throughout the workforce should follow management training, be offered to every employee, and be repeated periodically for all new employees. Ongoing workforce HIV/AIDS training programs for managers and all levels of employees loudly proclaim that HIV/AIDS stigma is not welcome in the workplace. When trainings are enhanced by additional workplace programs, such as HIV awareness posters; wellness programs; HIV counseling, testing and referral information; prevention information; and AIDS charity initiatives, everyone in that workforce will know they work in an environment that is supportive and free of HIV/AIDS stigma.
HIV/AIDS policies and programs are not difficult or costly. Federal resources, such as CDC's Business and Labor Respond to AIDS programs offer free resources, technical assistance, referrals, and advice on how to incorporate HIV/AIDS into workplace employee programs and nondiscrimination policies.
Juanita Smith, M.L.S., Constella Group, Inc., for research assistance.
Carolyn Branson, B.S.N, R.N., Constella Group, Inc., for support and critique.
For additional information, contact the CDC Business and Labor Resource Service at 1-877-242-9760.
