Why Language Matters: Facing HIV Stigma in Our Own Words
October 31, 2017
A special thanks to Community Advisory Board member, Vickie Lynn, for her significant contribution to the development of this fact sheet.
Table of Contents
The words people use to talk about HIV affect the way people living with HIV feel about themselves. These words also have an impact on how others perceive people living with HIV.
Words help shape our understanding of the world we live in. They define our experiences and are the foundation of our stories. Words and language describe who we are and how we connect with the world around us, and with ourselves.
Most of us have had one of those days when everything is going well and someone says a single word that changes everything. That one word does something to us, deep inside; we feel it in our gut, in our heart, and in our soul. In a heartbeat, that one word builds us up or tears us down. Words can inspire, empower, and bring us hope. But they can also bully and scare and destroy our sense of self.
Throughout their lives, women may experience multiple forms of oppression and discrimination based on gender, race, sexual identity, socioeconomic status, or other factors. This oppression and discrimination is often reinforced through language. For instance, an aggressive, powerful woman is called a "bitch," while a man with the same qualities is viewed with respect and called "ambitious." Adding an HIV diagnosis can magnify this oppression and affect self-worth, confidence, and self-identity.
Over the years, repeatedly hearing language that reinforces stigma, oppression, and discrimination ultimately affects the health and well-being of women diagnosed with HIV. Stigma and stress have a negative effect on women's overall quality of life, which can affect her family, her children, her job, and even her pregnancies. It is rare to find a woman living with HIV who has not felt stigmatized in some way.
A 2005 study from the International Center for Research on Women found that consequences of HIV-related stigma include:
HIV-related stigma affects prevention, deters people from being tested for HIV, and makes disclosure more difficult. The stress that stigma causes can affect the immune system, increasing susceptibility to illness and disease.
Using inappropriate language to describe HIV and women increases the amount of stigma and stress women experience daily. Putting the label before the person, as in the phrase "HIV-infected woman" or "HIV-infected mother," dehumanizes women and turns them into a disease or illness. Instead, the preferred phrase is "woman living with HIV" -- referring to the person first, before mentioning their health condition.
The narrative (public story of connected events) about HIV includes myths and false stereotypes that stigmatize the disease and isolate people living with HIV. These include the stereotype that people living with HIV are more sexually active than others and the myth that having sex with a person living with HIV automatically means that they will acquire HIV (the truth is that there is no measurable risk at all of HIV transmission when the person with HIV is taking HIV drugs and has an undetectable viral load). But stigmatizing stereotypes make for good rumors and gossip; and the news media often uses them to attract attention to their stories. Research has shown that the emotions most often shared in rumors are fear, anger, or disgust. These rumors then become part of our social environment, regardless of whether they are true.
Certain medical conditions are stigmatized more often than others; some conditions are seen as moral issues or character flaws, instead of the biological diseases that they are. Examples include leprosy, mental health, substance use, and HIV. People with leprosy are called lepers; people with mental health conditions are called "the mentally ill"; people who use mind-altering substances are called addicts or junkies. Reducing people to a label dismisses their humanity and sets them apart from others.
Stigma communication is in the language, labels, and messages used to educate and talk about a disease, condition, or group of people. HIV stigma communication is found in the history of the HIV epidemic, in the media, in social marketing prevention campaigns, in policies, in the research literature, in movies, and in our own heads. The language we hear, whether it comes from family or friends, news headlines, or research articles, becomes the language we use to describe ourselves and the language we use to describe others.
One way to address stigma is to use people-first language. The Denver Principles was a document written by HIV advocates in 1983, in the very early days of the epidemic. In its opening words, the Denver Principles called for the use of respectful person-first language:
This narrative describes people living with HIV as human and valuable. It shows respect and compassion. People-first language puts the person before the illness or label and describes who they are, not what they have been diagnosed with. People-first language helps eliminate prejudice and removes value judgments. When we describe people by labels or medical diagnoses, we devalue and disrespect them as individuals. People-first language respects people for who they are.
Think about when you hear about someone who "has a cold" or "has epilepsy"; this clearly describes a person who has an illness. Saying, "we saw an epileptic today" or "we saw an HIV-positive person today" describes the person as the illness, rather than a person who happens to have the illness. We never hear "cancerous people" or "I am cancer positive"; but we often hear people say "HIV-positive women" or "HIV-positive pregnant women."
It is important to note that terms and phrases like "living with AIDS" and "I am HIV positive" have been extremely empowering to many people living with HIV, while for others, these terms may not describe their experience, or may feel stigmatizing. That is okay; words and language mean different things to different people and at different times in their lives. It is important to allow others to define themselves as they wish, but to always start from a place of respect.
Over the years, as we have learned more about HIV treatment, care, and prevention, advocates have pushed HIV service organizations, media outlets, and other institutions to use language describing HIV that reflects those changes. Included in the left-hand column of the table below are some of the first terms ever used to talk about HIV. Little by little, the language we use is shifting toward the preferred terminology.
This article was provided by The Well Project. Visit The Well Project's Web site to learn more about their resources and initiatives for women living with HIV. The Well Project shares its content with TheBody.com to ensure all people have access to the highest quality treatment information available. The Well Project receives no advertising revenue from TheBody.com or the advertisers on this site. No advertiser on this site has any editorial input into The Well Project's content.
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