Taking Charge as a Person of Color

This is an excerpt from There is Hope: Learning to Live with HIV, 2nd Edition, written by Janice Ferri, with Richard R. Roose and Jill Schwendeman, a publication of The HIV Coalition.

Steve Wakefield is the former Executive Director of Chicago's Test Positive Aware Network. He has been involved with the HIV community since the early 1980's, and has worked full-time with HIV issues for about ten years. As an African-American, Steve has advised agencies that serve people of color as well as those in the broader community, and has an interest in making sure that all minorities get the best HIV information and services available. His advice: be aggressive against HIV. Go where there's information and support, then bring it back to your home community.

As a person of color, "taking charge" of your HIV may require a special effort. This is particularly true if you live in a poor community or have few financial resources of your own. For a person of color in America, learning to live with HIV very often means learning to:

1. Accept and cope with your illness despite the denial that exists around you
2. Seek help in places where you might not feel completely comfortable
3. Take part in regular, organized health care, and
4. Make positive changes in your lifestyle

Learning to Cope in a Sea of Denial

The first and most important thing for you to realize as an HIV-positive person of color is this: HIV is something you can live with. You've learned to live with racism, and not allowed it to stop you dead in your tracks. You've learned to take difficult situations and turn them into winning ones, and to do it without all the resources of someone who comes from a history of wealth and riches. Drawing on this experience, you can also cope successfully with HIV.

However, as a person of color, this will probably take a lot of extra determination on your part. You will find a great stigma surrounding this disease. There will be people in your community who will believe you did something wrong to get HIV. There won't be many people who will understand. The ignorance and fear will be multiplied many times over.

Since the Magic Johnson announcement, this may have eased a bit. I think many people of color now at least have the concept that HIV has touched them. Still, there remains a huge amount of denial, mainly because certain subjects are never, ever talked about--gay sexuality, for one. In many communities of color, there isn't a word for "homosexual," or even a slang expression. Thus, people tend to say, "We don't have anyone in our community who is gay." That tends to translate into, "We don't have anyone who's at risk for HIV--let alone, anyone who actually has it." I think because you're not allowed to speak of it, the denial lasts a lot longer.

Denial of any type of sex or sexuality leads to denial of HIV. If I don't have sex with a prostitute, or if I only get a blowjob and nobody knows about it, then I'm not at risk. Or if I only did it that one night when I really had to, because of the situation, then I'm not at risk. Or if I'm really a "nice" girl or boy, and nobody else believes otherwise, regardless of what I'm actually doing, then I'm not at risk.

Besides the denial of risk from sexual activity, there's the persistent view that HIV only affects Whites. People of color have just not had the opportunity to see themselves in the HIV picture that's been painted by the American media. Until Magic, we haven't had role models who were living with HIV. You never saw HIV-positive people of color in any stories or plays or TV specials. People with HIV were always White and lived in White communities. So it's hard to believe that HIV is a reality in the Black or Hispanic or Asian community. If you don't see it, you don't know it's there. If you never talk about it, then you just might decide not to do anything about it when you find it's affected you personally. And that decision could be deadly.

I think about my own family experience. I've gone to the funerals of three relatives who died of AIDS. It's never, ever mentioned that they died of AIDS. In two cases, up until the moment of death, it was denied by the mothers who were the primary caregivers for their sons and daughters. Other friends and family members were asked to help provide care, and all they were told was that the person had "cancer." If this can happen in a family where there's a member who's allegedly well-informed about HIV and AIDS, it certainly goes on in families where there's no knowledge at all.

This level of community and family denial makes it especially hard to tell other people about your HIV. Because of the oppressions and hardships you have faced, you have an urgent need to maintain those relationships that work: with your co-workers, your friends, your family, your landlord. You don't want to risk destroying these relationships by disclosing or talking about your HIV status. Worrying about how others will react can be very frightening.

You may be afraid that someone will "catch" you with HIV or AIDS literature in your home because if you have that literature, they'll assume you must have AIDS. People won't allow the possibility that it could be just intellectual curiosity, since "the only book worth reading is the Bible." So if you've got a book on AIDS, "You must be doin' somethin' wrong, child"--and if you'd been reading your Bible, you wouldn't need that other book. These are the negative messages the community sends out that we as people of color have to deal with.

Our churches also perpetuate this culture of judgment and silence. If HIV or AIDS is talked about in church, it's usually in a "Thou Shalt Not" context. If it's already too late, then it's "Thou Should Not Have." In the church, we don't talk about sex or sexuality unless it's in the context of making more people.

In your attempt to take charge of your HIV, you will have to go beyond this sea of denial into a place where you can accept the realities of your illness and act on them without fear or indecision. Most probably, this will mean keeping quiet about your HIV status as long as possible in order to avoid hassles, discrimination, and the counterproductive moralizing of people around you. And, it will probably mean venturing outside your familiar environment to find the support and resources you'll need to live successfully with your disease.

Help and Comfort in "Foreign" Places

Hiding your HIV status may be necessary to your survival in the community. However, it will make you feel very isolated and alone. HIV is not something you can handle by yourself for very long. If you deny or ignore your HIV infection, it won't go away--it'll only get worse. Neglect it long enough and it may kill you.

To live with HIV, you must acknowledge two things: the virus itself within you, and your own need for support. Some of that support will come from your own inner strengths and resources. But you must also look for support outside yourself. You have to find the people, the tools, and the services to help you fight disease.

Given the denial in your own community, you probably won't find too many of these locally. Many people of color therefore have to decide that there's another community they need to start to belong to. I've heard them express it this way: "I have to find other people living with this virus who've been there and know what I'm talking about. I have to realize and accept that the resources I need to survive won't always exist in the places I want them to be."

And that's probably the hardest part of beginning to deal with HIV as a person of color: being forced to move in a new world on account of your HIV status. In most cases, this will mean creating an alliance with a gay, White, middle-class world, because that's where most of the services are.

So if I, as a person of color, seek services, I have two choices. I can go to the corner walk-in care clinic where they may have seen only a few people with HIV. Or I can travel into the gay White community and go to an agency or clinic where 80% of the clients are HIV-positive and most are gay White males. I have to deal with what that feels like on top of having to deal with my HIV. I have to travel farther than I might normally travel to get health care. I have to get used to surroundings that are a lot fancier and more intimidating than what I'm used to.

And though I've dealt many times in life with being the only person of color in any situation, be it a work, education, or social situation, that doesn't make things any easier or more pleasant. If I'm already dealing with a devastating illness, it's that much harder to go someplace where I have to be different one more time. Instead of being different once, I'm different twice. Or if I'm an Hispanic person of color, I'm different three times: I'm ethnically different, I may be sexually and/or economically different, and I don't understand what these people are talking about. It's definitely not easy.

Still, if you want to survive, you've got to make the effort. You've got to be able to say, "I don't care what I have to go through or where I have to go, I'm going to get help. I'm going where I can talk about and learn the most about my HIV." There's so much stigma attached to HIV that racial barriers begin to seem unimportant. What I am anyplace else in the world is unimportant. Once I'm HIV-positive, once my life is at stake, that redefines me in such a way that I become part of a new whole, a new community.

That means if my doctor doesn't know anything about HIV, I need a new doctor. If the people at the local clinic don't know anything about HIV, I may have to go far away to a different clinic. And those are expensive choices to make, both in terms of human hardship and economics. But I have to make those choices; I have to break out of the mold so I can live with HIV a lot longer. As communities of color gradually come to accept that HIV is in their midst, resources will begin to appear closer to home. However, it will take them awhile to become fully established. So suppose I've been going to this large gay, White agency, and they have this fairly nice facility, and I think I'm getting good medical care. But suddenly I hear that in my own neighborhood, there's a place that's starting to provide services.

So I go there, and they're in a rundown old building, and they're barely struggling, and I wonder if they really know what they're doing. But it feels good, because they can talk to me in a language that I'm used to talking in. Still, I question whether I'm getting the right information, because when I was at that other place, they opened a nice notebook, and they flipped through the pages and found what I needed, and were able to print a sheet out of their computer. And in my neighborhood, this woman just wrote something down on a scrap of paper and gave it to me. So how do I know which information is the best for me to have?

I would encourage you to trust the information you get in the agency where you feel most comfortable. If it's accurate and up-to-date information, it doesn't matter whether or not it's given with all the modern technology and trappings. I don't feel this puts down TPA and other organizations like it, because I think HIV has brought a new age in terms of how we get medical information. We understand it has to come from those people who are living and dealing with the virus on a day-to-day basis. We can't wait ten years for confirmation from medical journals that a drug works. We need answers today.

A New Way of Thinking about Health Care

For many people of color, the emergency room doctor is the only doctor they ever see. In a survival-based community where people are transient, new, or poor, health care is not the primary issue. Finding work, staying warm, getting money, or dodging bullets--those are the issues that matter right now. Protecting our children. Putting food on the table and clothes on our backs. Not preventive health care or regular checkups.

But "crisis health care" is not enough to deal with your HIV. By the time you've been wheezing and coughing and sneezing for eight weeks because you didn't do anything about it earlier, it may be too late. You may be at a life-threatening stage of your illness. Living with HIV requires a new way of thinking about your body and your health, and your interactions with medical professionals.

At first, this may seem very alien, or like it's not worth the bother. That's up to you to decide. The way you make that decision is to ask yourself whether staying alive and well enough to function is worth the bother. If you decide it is, you'll need to make some changes. You'll need to make up your mind to start listening to healthcare workers--doctors and nurses and other people you may not trust. I mistrust them because every time I talk to them or see them, it costs me money. Then, it costs me more money to do whatever it is they tell me to do. So I have to figure out how I can begin to trust them and do what they tell me to do in the least expensive and most creative way possible.

Sometimes, that's going to mean getting health care at a place where I pay for it with my waiting time. I may have to go to a county hospital or public health clinic and sit eight long hours because I don't have an extra $80. So how I have to think of it is, I'm paying for my health care by waiting at $10 an hour. I have more time than I have money, so I have to pay for my health care with my time. And then I can get everything I need, all the information and treatments and tests I require.

As people of color, we often lack the economic resources to pay for the latest drugs and treatments that can keep us alive and healthy. Frequently, the only way we're able to get access to experimental treatments is to join clinical trials. Whenever a doctor or a nurse says there's no proven treatment for something, always ask, "Are there any experimental treatments being tested? Is there a clinical trial I can join? If so, how do I get in?" People of color haven't traditionally been enrolled in clinical trials in significant numbers. Primarily, this is because these trials have been mainly for people who can afford to get their medical treatment at large teaching hospitals. Trial administrators tended to favor enrolling patients who were well-educated, highly literate participants in their own health care--especially if they had good insurance.

Today, things are changing. There are community-based clinics where you can go to be in clinical trials. But if I'm going to be in a clinical trial, I have to be willing to listen and ask questions and follow directions. I have to be willing to ask someone to read something to me if I don't understand it. I have to be willing to call back a second or third time if necessary, and ask again how to take my medicine if I'm not sure--because if I don't, I could harm myself. I have to learn that even though I feel better after the fifth day, I take all ten days' worth of medication. And though I may not like the medication, I can't tell the doctor that I took it all if I didn't. I need to tell the doctor it upset my stomach and that I stopped taking it the third day.

So I have to be honest with healthcare workers and realize that they won't deny me services because I didn't do what I was told the first time. Maybe they can help me find a different way to get better. I have to learn to put my trust in organized medicine.

However, that doesn't mean I have to abandon those spiritual methods of healing that have always worked for me. On the contrary, they may enhance whatever's happening with Western medicine. Qui-gong, herbal remedies, acupuncture, massage--all kinds of things that have long been part of medicine in other cultures have become part of the way we're dealing with HIV in America today. There has been a learning process and a sharing process that is new.

Changes for the Better

I think the final thing that people of color need to recognize is that when faced with HIV, they have to start making some concrete lifestyle changes. And where do I get that list of lifestyle changes? I go back to everything Grandma told me to do. She told me to get plenty of rest. She told me to eat properly every day. She told me not to take drugs or drink too much. She told me to take all my medicine.

And everything Grandma told me to do every day is exactly what the doctor's going to tell me to do to deal with my HIV. So I need to listen to those messages even though they're now coming from an HIV professional. As if Grandma were standing there and telling me, "Honey, c'mon over here and do this." Because those are the things that will keep me alive and help me live with HIV. Paying attention to whatever will keep me healthy and well. That's the most important thing now.