This excerpt is reprinted by permission of Jossey-Bass Inc., Publishers,
from What Everyone Can Do to Fight AIDS,
by Anne Garwood and Ben Melnick.
We get nervous. We avoid the subject. We look away. We don't want to know. We may not like to admit this to ourselves, but we don't really like to talk about AIDS, and worse still, we don't know how to act around people with AIDS. We'd rather avoid them.
AIDS forces us to confront parts of life we are uncomfortable with, like sexuality, sickness, and death. People with AIDS know all of this. They know that their friends avoid certain subjects with them. They notice that people stop touching them. They hear us talk about "innocent victims of AIDS" and wonder if they are among the guilty. They feel themselves gradually being pushed outside, not called, left alone, cast off by society.
It's normal to have some fear or troubling thoughts and uncertainties about what to do or say. You shouldn't be ashamed. Everyone is unsure of how to act in new situations. If you haven't known anyone with a fatal disease before, you're probably not going to know what to do when you first meet someone who does.
In the first two chapters we learned that you can't catch HIV just by being near people with AIDS-not by touching them, hugging them, or doing any of the things friends normally do together. In this chapter, we will learn about important considerations to make when getting to know people who are living with AIDS.
While we should be aware of some basic health issues and special sensitivities people with AIDS might have, there is no need to learn any special new kind of behavior to use with them. We only need to treat them with the same respect and humanity with which, ideally, we treat everyone. There are, however, a few wrong assumptions many of us make about what to say or do around people with AIDS that can lead to thoughtless and mistaken characterizations and prejudgment. What then, is the best way to reach out to people living with AIDS? The following suggestions should help.
Get to know people living with AIDS
Knowing people who are living with HIV helps to humanize the disease and allows you to see beyond the staggering headlines and statistics. AIDS isn't really about numbers and risk groups-it's about people, about friends and family, co-workers and caregivers.
Most of us are afraid or unsure of ourselves in unfamiliar situations. We also may feel uncomfortable around, or have wrong ideas about, people we don't know. AIDS is a scary disease. People who have AIDS may seem scary as well. The obvious way to solve this problem is to get to know some people living with AIDS.
It's important to remember the difference between being HIV positive and having AIDS. People who are HIV positive may be healthy; they often look just like everyone else. You probably already know people who are HIV positive, and you just are not aware of it. Unless people tell you their HIV status, you can't tell who has been infected. You can meet people with HIV anywhere -- on the job, at a baseball game, at the grocery store -- anywhere you meet people.
Those who have been diagnosed with AIDS, however, are beginning to feel -- and show -- the effects of a weakened immune system. As the disease progresses, they may need more assistance and support. These are probably the people you will meet if you begin volunteering for AIDS service organizations, whether you are delivering meals, providing practical support, or visiting the AIDS ward.
There are many ways to learn about AIDS and how it affects the lives of those who live with it. A good first step is to read books, watch documentaries, or even read plays by or about people with AIDS. Your local library probably has a number of the excellent books listed in the back of this chapter. Many video stores rent films like Philadelphia or Longtime Companion and documentaries such as Common Threads: Stories from the Quilt, a film about the AIDS Memorial Quilt. These works contain many inspiring and moving stories about the lives of people with AIDS, their caregivers, and families.
Many people have their first exposure to the people behind the statistics at a display of the AIDS Memorial Quilt. The quilt is a giant, ever-growing fabric memorial made up of thousands of three-by-six-foot panels, each remembering the life of a person lost to AIDS. Each panel, created by family, friends, and lovers, tells the story of a life and helps to build awareness and compassion. Portions of the quilt are displayed in communities all over the country. For information about the quilt, contact The NAMES Project Foundation at 415/882-5500.
As the disease takes hold in more communities across the country and around the world, it becomes more and more likely that you will know someone who is affected by AIDS -- a friend, a co-worker, even a family member. If AIDS has not yet touched your life so personally, you may want to become acquainted with people who are living with AIDS. Once you have an understanding of AIDS as a force in the lives of individuals and not just as a faraway and terrifying plague, you may feel ready to become involved in the fight against the disease.
One of the best and most helpful ways to get to know a person with AIDS is to volunteer for an AIDS service organization in your community. There are many ways to make a difference. For instance, you can deliver meals to people with AIDS, work at a drop-in center, or help to provide practical or emotional support to people who are living with the disease.
Elly, a woman in Washington, D.C., wanted to experience directly what she had been reading about in the papers, so she volunteered through a church group to clean house for people with AIDS. Through this program she met Lillian, a young woman with AIDS. Elly says:
"When I decided to help I had a lot of built-in expectations. I thought I'd meet people that were really different. I never imagined I'd meet a woman who was dealing with the disease, a woman who reminds me of myself. Meeting Lillian has really opened my eyes and helped me to see that AIDS can happen to anyone."
Chapter Five discusses volunteering at AIDS service organizations and describes the types of volunteer services that are needed.
Don't misspeak about AIDS
Language and how we use it is very important. It reveals a lot about what we think and how we feel. When talking about AIDS, there are a number of disrespectful and dehumanizing words we may use unintentionally.
There are no "AIDS victims"
One of the most important changes we should make is to stop using the term victim to refer to people who are living with AIDS. By calling someone an AIDS victim we are saying that he or she is powerless in the face of this disease and should have no hope. We should instead use our words to emphasize the strength and the hope of those fighting AIDS.
There are no "innocent victims"
Early in the epidemic -- and even today, unfortunately -- it was common for people to talk about the "innocent victims" of AIDS who caught the disease "through no fault of their own." This implied that anyone who caught the disease because of doing something unsafe was some sort of guilty perpetrator of AIDS who deserved to suffer a terrible death. This sort of judgment, which casts some as innocent and lays blame on others, serves only to increase the stigma attached to this awful disease. No one with AIDS deserves to have it. No one deserves to suffer.
There are just people with AIDS
What you call someone is important. A name signifies more than just the words used, it suggests how the individual being referred to is seen by the group. People are often confused about what to call a person living with AIDS. If the term victim is out, what can you say? Most say, simply, "person with AIDS," which is often shortened to "PWA." Others even make it "PLWA" or "person living with AIDS." These phrases and acronyms help to maintain the humanity of the person involved, and they avoid reducing anyone to a diagnosis or condition.
Do not ask how a person caught HIV
It's tactless to ask how a person got AIDS. It implies that some of the ways of contracting the virus are all right and others are not. It's like asking someone if they are an innocent victim or if they deserved it. This question serves no real purpose and gets in the way of getting to know a person living with AIDS.
Be yourself: behave normally toward people with AIDS
Now that we know AIDS can't be spread by casual contact, how do we relax enough to be casual with a person who has AIDS? Many people become very nervous about this. Worrying that they might offend or upset, they find it hard to relax and behave naturally. People with AIDS will be much more upset by distance and restraint than by anything you might say. Treat people with AIDS with respect and awareness, not with velvet gloves.
Don't be afraid to touch
Humans crave touch. Being touched is comforting; it's one of the ways we know that we are liked and trusted by others. Without touch, there is less reinforcement, less comfort, less love. Without touch, there is a sense of isolation, of being alone. Because so many people are afraid of touching them, people with AIDS miss out on this ordinary physical contact. Hugging and shaking hands are completely safe and can make a huge difference in the life of someone with AIDS.
Don't be afraid of saying the wrong thing
Although it is important to learn about respectful language and other sensitivities, these issues should not stop people from making contact. The main challenge is to not behave differently toward people with AIDS. When you make a genuine attempt to know someone, your friendly intention makes more of an impact than a few wrong words ever could.
Understand that anyone can have AIDS
AIDS crosses all lines of gender, race, class, and sexuality. It is not simply a gay disease. While it is true that gay men were among the first and hardest hit, AIDS has spread far beyond this community. Gays and lesbians responded very publicly and heroically to the epidemic; they began many of the AIDS services and resources currently available. While the gay and lesbian response has been inspiring, the public has been less receptive to AIDS information because it perceives AIDS as a gay disease. This attitude not only stigmatizes those living with AIDS, it leads to unnecessary risk-taking, poor choices, and the spread of fear and hatred in our society.
If you see AIDS as a disease that only touches other people's lives, you probably won't take the precautions that could save your own life. You may also think of those who are infected with HIV or living with AIDS as different or as deserving of their fate. The AIDS epidemic provides an opportunity to accept others and to practice compassion.
If you know someone who has AIDS-if not a friend, perhaps a friend of a friend, a friend's family member, and so on-you may wonder if your relationship with that person will change. Remember, a person's personality doesn't change when disease strikes. They still have the same likes, dislikes, and sense of humor. Also, like anyone who is facing a terminal illness, a person with AIDS wants and deserves to be treated with respect, dignity and, most importantly, without pity. It's important to keep this in mind when relating to people with AIDS.
Pity is an emotion that may seem loving or kind to the one who feels it, but which feels very different to the person on the receiving end. It is kinder to ask "May I help you?" than to say "Do you need help with that?" No one wants to feel patronized or condescended to; no one likes feeling powerless or like a burden.
Be aware of special health needs
There are many things we take for granted in our daily lives, such as the ability of our immune system to fight off ever-present germs, or being able to move comfortably in many environments. But for someone with an immune weakness, the environment presents many challenges and hazards. People with AIDS have special health needs that force them to worry daily about things most of us never even think about. There are a number of things we can do to make life easier-and more healthy-for people with AIDS, both in our homes and offices.
- Don't go to work sick. When you go to work sick, you not only run yourself down and increase your own recovery time, you may also give what you have to co-workers. Since people with AIDS have a tough time fighting off infections, keeping your cold and flu bugs at home helps everyone stay healthier.
- Provide a healthy space. A healthy environment is good for everyone and can help reduce the risk of spreading common colds, flus, and more serious infections among all people, including people with AIDS or HIV. Make sure there is adequate ventilation at home and in the workplace, and keep things clean, particularly in kitchens and bathrooms. Bacterial and fungal infections that are airborne or spread on surfaces can be very damaging to people with weakened immune systems. Make sure that air-conditioning filters are cleaned regularly and that thermostats are not set too low.
- Avoid strong scents in personal care and household products. Strong scents can be overpowering to someone with a weakened immune system. Do not, for example, overdo the cologne or the air freshener.
- Don't serve risky foods. Avoid undercooked, unwashed, or potentially spoiled foods, since people with AIDS are more sensitive to harmful bacteria than healthy people are. Good foods for people with compromised immune systems are basically the same foods that are healthy for the rest of us, including lots of fruits, vegetables, and whole grains. Be sure to wash foods that may have been chemically treated. Some foods to avoid are: Unpasteurized milk, dairy products, or soft, ripened cheeses (like Camembert); raw fish, meats, and eggs (sushi, oysters, eggnogs); undercooked meats; and aged foods, such as cheeses, sausage, or moldy items.
- Have noncaffeinated beverages available. While caffeinated beverages seem to be what makes the world go 'round, they can be harmful to the health of people with AIDS. Be sure to have noncaffeinated options, such as herbal teas, available.
- Keep pet waste out of the way. Although animals can be a tremendous source of love and joy for people living with AIDS, handling their waste products can be dangerous-even deadly. Toxoplasmosis, a serious fungal infection that leads to seizures, coma, and death, is spread most commonly through cleaning out kitty litter. Psittacosis is an infectious disease-causing organism that is spread through bird feces.
Learning more about people living with AIDS
Books about the experience of AIDS
- Anonymity: The Secret Life of an American Family by Susan Bergman (Farrar, Straus & Giroux, 1994)
- Borrowed Time: An AIDS Memoir by Paul Monette (Avon Books, 1988)
- In the Absence of Angels by Elisabeth Glaser and Laura Palmer (Berkley, 1992)
- Positive Women: Voices of Women Living with AIDS edited by Andrea Rudd and Darien Taylor (Second Story Press, 1992)
- A Promise to Remember: The NAMES Project Book of Letters edited by Joe Brown (Avon, 1992)
- The Quilt: Stories from The NAMES Project by Cindy Ruskin (Pocket Books, 1988)
- A Rock and a Hard Place: One Boy's Triumphant Story by Anthony Godby Johnson (Crown, 1993)
- Ryan White: My Own Story by Ryan White and Ann Marie Cunningham (Dial Books, 1991)
- The Screaming Room: A Mother's Journal of her Son's Struggle with AIDS by Barbara Peabody (Avon, 1986)
- Seasons of Grief and Grace: A Sister's Story of AIDS by Susan Ford Wiltshire (Vanderbilt, 1994)
- Sleep with the Angels: A Mother Challenges AIDS by Mary Fisher (Moyer Bell, 1994)
- Someone Was Here: Profiles in the AIDS Epidemic by George Whitmore (NAL Books, 1988)
- Surviving AIDS by Michael Callen (Harper Perennial, 1990)
- Thanksgiving: An AIDS Journal by Elizabeth Cox (HarperCollins, 1990)
Videotapes about the experience of AIDS
- Common Threads: Stories from the Quilt
- Longtime Companion
- The Los Altos Story
What Everyone Can Do to Fight AIDS is available from:
350 Sansome Street, Fifth Floor
San Francisco, CA 94104-1342
Or search at The Body's bookstore.