When Words Work Against Us: The Language of HIV Stigma

When a person has HIV, there's a virus within his or her body. That diagnosis doesn't mean that the person is now defined by the virus he or she carries. But for many years, the language of HIV/AIDS has -- intentionally or unintentionally -- marginalized groups of people living with HIV, as well as those in communities with high rates of HIV infection. The time has come to reframe the lingo around HIV/AIDS in order to empower rather than alienate, and to educate the general public.

The U.S. Centers for Disease Control and Prevention defines HIV as "a virus spread through body fluids that affects specific cells of the immune system, called CD4 cells, or T cells. Over time, HIV can destroy so many of these cells that the body can't fight off infections and disease." It continues on to say that an HIV infection can lead to AIDS. Often, however, HIV and AIDS morph in people's minds into a single condition in which people who contract HIV are perceived as having received an automatic death sentence.

Terminology can also foster stigma by misidentification. Vickie Lynn, M.S.W., M.P.H., instructor and doctoral student in the Department of Public Health at the University of South Florida, says that when people refer to men and women with HIV, it is imperative to make those labels secondary. "Many people use language incorrectly, so I think it confuses the general public. They put the disease before the person and not the other way around. So rather than use labels to define a person, we need to use terms that are more appropriate. Instead of saying 'HIV-infected people' we should be saying 'people living with HIV,'" she explained in a recent webinar sponsored by the Positive Women's Network-USA (PWN-USA).

In the webinar, Lynn and her colleague Valerie Wojciechowicz, a motivational speaker and creator of 4HIVhelp.com, presented ways that people can reroute their language use. They highlighted how language shapes our world and how to choose empowering language over stigmatizing words. "Look up the term 'full-blown AIDS.' There's no such thing as full-blown AIDS because there's no half-blown AIDS. There are some people who still use that term. I was horrified that reputable journals use this type of terminology," stated Lynn. She adds that when people discuss HIV/AIDS, they should refrain from stigmatizing words such as victim, sufferer and contaminated. She also advises that people replace terms like "risky sex" and "promiscuous" with more accurate terms such as "condomless sex with or without PrEP" and "having multiple sex partners."

Mixed Messages

The media can have a big effect on changing the tide on stigmatizing language, they explained. Although most ads and campaigns are well intentioned, inaccurate wording can unwittingly work against the desired goals. Phrases that suggest that one partner gives AIDS to another or that women should insist on a man getting a condom can counter empowerment. AIDS is not communicable; only the virus that causes it is. Protection can come from the male or female in a relationship. Staying healthy is everyone's responsibility. Projecting misinformation is yet another way of perpetuating stigma.

Additionally, mixed messages can reinforce discrimination. HIV has been described as a chronic disease, which reduces the alarm. However, creating a more relaxed atmosphere around this condition -- which remains highly stigmatized and requires ongoing monitoring and care -- can also be a way to deny or restrict important services needed by people living with HIV, such as health care and housing.

And if HIV is a manageable, chronic disease that doesn't warrant extra attention, then why is HIV status used as a means of criminalizing people in certain states? People living with HIV are literally being prosecuted for their saliva, which does not transmit the virus.

Who Is Responsible for Changing the Language?

The media, medical professionals and community health advocates all play a role in changing the language. But change can also be propelled by the people who live with HIV. Making self-denigrating statements like "I'm sick" or "I have that bug" can fuel fear that living with HIV is a forlorn predicament.

Waheedah Shabazz-El, regional organizing coordinator for PWN-USA and goodwill ambassador for Philadelphia FIGHT, has been living with HIV for 12 years. She says that people with HIV have the ability to stop the cycle of language misuse from continuing.

"People living with HIV are best suited to create this manifesto. We are in a better position to tell the public what stays and what doesn't stay. I was always told that it's not what you're called but what you answer to. It's an inside job. And then it becomes an outside job," she told TheBody.com.

People living with HIV can advocate for more effective, accurate use of language by making changes from within organizations. Shabazz-El says that people can start by not accepting terms that portray people living with HIV in a negative light. "We need to be involved in the decision making. I've heard people use the word 'consumers' to describe us. But it's not used the way we see it in the dictionary. It's used to say that we just consume AIDS services. We don't give back. I have approached organizations and asked them to change the word 'consumers' in their mission statements. I'm a person living with HIV, not a consumer."

Misinformation can be the enemy of hope when people are trying to make change, whether in their individual lives or at the broader public level. Using imprecise language to describe people living with HIV is an assured way of fostering fear and discrimination. Advocates stress that it will take a conscientious effort by people living with and without HIV to create change -- but it can be done.

Candace Y.A. Montague is a native of Washington, D.C., and covers HIV news all around the District. She has covered fundraisers, motorcycle rides, town hall meetings, house balls, Capitol Hill press conferences, election campaigns, protests and an International AIDS Conference for The D.C. Examiner.com, emPower News Magazine_, the Black AIDS Institute and TheBody.com. One of her two master's degrees is in community health promotion and education. She is also an educator and a mother of two._