Picture this. It’s 1983, New Year’s Day. Today, the world’s first outpatient clinic for AIDS opens, Ward 86 at San Francisco General Hospital. Four days later, the first AIDS cases are reported in women.
Five months later, on May 3, San Francisco’s Kaposi’s Sarcoma Foundation (today known as the AIDS Foundation) sponsors the first AIDS candlelight vigils, in San Francisco and New York. A group of gay men with AIDS carry a banner in the San Francisco vigil. “Fighting for Our Lives,” it says.
On May 20, researchers at the Pasteur Institute in Paris report they have found a new retrovirus that could possibly be the cause of AIDS.
For the first time since it was first identified in 1981, the AIDS epidemic makes the nation’s front pages at the end of May: 1,450 AIDS cases have been reported; 558 people have already died.
It’s a terrifying time, especially if you are a gay man living in a major American city. As fear rises, stigma increases against those with the lethal, mysterious illness. People are being rejected by their families, fired from jobs, and thrown out of their homes merely for being “suspected” of having AIDS.
Seizing and redefining the language of illness
Amidst the fear, against the stigma, 11 gay men living with AIDS on June 12 take over the stage at the National AIDS Forum being held in conjunction with the annual National Lesbian and Gay Health Conference, in Denver. They issue a statement they call “The Denver Principles,” launching the beginning of the people with AIDS self-empowerment movement.
The Denver Principles, the founding document for what became the National Association of People with AIDS, declared, “We condemn attempts to label us as ‘victims,’ a term that implies defeat, and we are only occasionally ‘patients,’ a term that implies passivity, helplessness, and dependence upon the care of others. We are ‘People With AIDS.’”
For the first time in history, a group of people afflicted with what in 1983 is an almost invariably fatal illness—highly stigmatized because of the ways it is primarily transmitted, via sex and injection drug use—stand up for themselves, demanding they be treated foremost as people. Their humanity is what must define them; not their medical diagnosis.
This kind of “person-first” language was codified in the 1990 Americans with Disabilities Act (ADA). In July 2021, the People First Charter was adopted at the International AIDS Society Conference in Berlin to address the stigmatizing, blaming language that was rife in the HIV/AIDS world. Terms such as “HIV-infected person,” “became infected,” and “serodiscordant” for couples of different HIV statuses were commonly used.
“Person-first language simply puts people before their condition,” the charter says,” recognizing that people are people, and not defined by their condition. In HIV care we should avoid terms like ‘HIV-infected people’ and use ‘people living with HIV.’”
The charter cites other conditions in which person-first language should replace highly stigmatizing language commonly used—such as “person with diabetes” instead of “diabetic,” and “person with obesity” rather than “obese person.”
Why you should use person-first language in your self-talk
An estimated 129 million live with at least one major chronic illness, such as heart disease, cancer, diabetes, obesity, or hypertension, according to the U.S. Department of Health and Human Services.
It’s important that people—including you, dear reader—be seen first and foremost as people, not as their condition. People are not “cases” or “illnesses to be managed.”
Chronic Illness Essential Reads
It’s also important to bear in mind that living with a chronic condition requires a sense of empowerment. You need to believe that following your prescribed treatment will keep you as healthy as possible. Even if a cure isn’t available, it takes resilience to heal in your mind and heart from the wounds that a chronic illness inflicts in you.
Language, the words you choose to describe your chronic condition, can support your resilience and healing—or undermine you. Think about the difference, for example, between telling yourself, “It’s not fair that I have diabetes and can’t eat my favorite snacks anymore” versus “I don’t like having diabetes, but not being able to eat sugary snacks isn’t too high a price to pay for staying well.”
The first phrase shows you feel victimized by your condition, while the second one shows that you are calling the shots on your own health, choosing wellness over the sugary snacks.
Words and language don’t merely describe our experiences but also shape them.
If you think of and speak about yourself—especially in your own mind—as a victim of your health conditions, you will indeed be a victim. And you will deprive yourself of your own agency and power. Your health, certainly your mental health, is likely to suffer.
But if instead you think of yourself as a survivor—as the hero of your life story—you can find the courage, empowerment, hope, resilience, and strength you need to carry on.
