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HIV/AIDS Resource Center for African Americans
Kai Chandler Lois Crenshaw Gary Paul Wright Fortunata Kasege Keith Green Lois Bates Greg Braxton Vanessa Austin Bernard Jackson


January 2006

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African-American Identity and HIV

When did you first realize that you were African-American?

For me, growing up, it was very obvious. Taking the rides down south to Memphis and certain parts of Mississippi with my dad in the early '60s, there were experiences that linger in my mind today. There was only one white family on my block—and I remember that family as probably the best family in that neighborhood, because I was a paperboy and they'd tip the most.

There used to be a store called Chicago Community Department Store (CDS) -- that's where your mom and dad could take you and you could buy an entire outfit for $10 or $12. You had to shop in the daytime as a black person, and there was a viaduct that divided the racial line in that area. Chicago has always been known for its viaducts being dividing lines for racial and cultural communities. Whenever we went to CDS we had to make sure we were back under that viaduct before it got dark -- for your health and safety, you'd get home before dark.

It was a thing in the African-American community that everyone took care of their own neighborhood. That was a good feeling. If the neighbor's fence needed painting, it got done. If there was a vacant lot in the 'hood, it was never caught with debris in it. There were block parties to clean up the community.


There was a great sense of community, and I hate that it's not there anymore. The kids now are taking it totally the wrong way. When I was growing up, gangs were organized to take care of their community, not necessarily to go out to fight rival gangs, but to let it be known that, "We're here and we take care of our own." That's what I miss.

To what extent have you experienced racism in your life? How have you learned to deal with it?

There was a drugstore, and I can still remember as a child not being allowed to sit at the counter. This had to be when I was 11 or 12, in '67 or '68. In the summer the family would drive to Memphis, and I can remember so many times going down I-57 and being told, "You better fill up at this station, because when you go through Cairo you certainly don't want to stop there!"

When we were in Memphis, I remember seeing the "For Whites Only" signs -- not being used anymore, but still there.

I remember in '67 or '68 when Mayor Daley, old man Daley, put out the "Shoot to Kill" order -- anybody caught outside of their home or neighborhood after certain hours, shoot first and ask questions later. And it was mostly in the black communities, and had a lot to do with the riots on the west side behind the Democratic National Convention. I remember the police assassination of [Black Panthers] Fred Hampton, Mark Clark, Bobby Wright, that whole household -- my brother had business on the west side and he came home that day explaining what was going on. And I'm so proud of the ones who are still around who were part of the Black Panther movement who've gone on to become key figures in Chicago city politics, like Bobby Rush.

Even though a lot was noticeable, I simply chose to overlook racism. When I landed a job working for a Fortune 500 company in Philadelphia as the only black sales rep, I asked during the interview process, "Why are you guys hiring me from Chicago to come out and work in Philly?" And the guy was perfectly honest with me by stating, "You know, we have a problem finding African-American candidates for this position and keeping them once they're employed." I could soon see why, 'cause there was a lot of racism in the organization.

What do you think is the biggest challenge facing African Americans today in terms of HIV?

Lack of knowledge. And it sort of goes back to the old adage, "If you want to hide something from a black, hide it in a book." It's not that the knowledge is not readily available, it's that the knowledge is being disseminated into the African-American community in a very general way. When you're trying to identify with a specific population, there's sometimes a need for creative ways of doing so. I know on Black Entertainment TV (BET), a lot of the HIV-prevention advertisements target the African-American community and their messages are very clear. But that's a cable channel, so how many people actually have cable, when you consider the cost?

What HIV risk factors are of special concern to African Americans?

One of the risk factors is, when you take a community such as Chicago's Rockwell Gardens housing project, and you have individuals who feel both mentally and physically that they're isolated and can't go beyond that area, what goes on in that area stays in that area. And what ultimately ends up happening in that area is that if you have one person who's infected, that one person has the potential to infect a whole slew of people in that area. That was seen back when the Chicago Department of Public Health detected a particular strain of syphilis that was only showing up in the Rockwell Gardens area. And how do you have one strain of syphilis only in one area? It had to start with one person infecting a multitude of people.

Are there any specific aspects of African-American culture or identity that give you strength?

I'm not sure. My response to that would be that I had to seek my help in the "gay white male" agencies in the city.

What is the biggest change you'd like to see in HIV treatment, prevention or education for African Americans?

Once again, just to get out the knowledge that HIV care and prevention are available. Certainly if you provide the information, you can begin to change the attitudes that many African Americans have toward HIV and AIDS. And if you can change some of the attitudes, the end result would be a change in behavior.

There's still a lingering attitude in the African-American community that this is something that doesn't affect us. That that this is a disease for homosexual and gay people only, a disease that affects only people who are doomed to die from their sins -- as indicated in most of the African-American churches. This is beginning to change, but not fast enough.

Do you think the Bush administration is doing enough for the black epidemic?

I think he's doing just what he wants to do, which is to make sure it stays with people of lower economic status, whether it's the African-American community or all people of lower economic status.

How would you grade Bush's performance?

Very poor.

What are some of the top myths about HIV that you encounter in African-American community?

I think there's still the thought, "This could not happen to me." I think it goes back to that whole theory of invisibility -- the African-American community thinks it's a disease that won't affect them, perhaps that even they're immune to it. The reality is much different!

What are your fears and hopes for the next generation of African-Americans as they face the risks of HIV?

Well, today it's HIV, tomorrow, it'll be something else. And I stay pretty optimistic that soon there will be, if not a cure coming down the pipeline, some kind of vaccine that will be prevent the onset and the spread of HIV.

HIV, Health Care and Treatment

What has your experience with HIV treatment been like?

My own personal opinion of the health care that I've received is that it's been great, because eventually when I got off the pity pot and realized this was a disease I could live with and I began to seek adequate treatment, I was able to find it very easily. I have not been ill yet due to my HIV status -- after 20 years!

What HIV medications have you been on?

The initial ones, the AZT [zidovudine, Retrovir] and ddI [didanosine, Videx]. Then I moved on to the first protease inhibitor I was on, which was Crixivan [indinavir]. And then I switched over to Viramune [nevirapine], Zerit [stavudine, d4T], and Epivir [lamivudine, 3TC]. Now I'm on Viramune and Emtriva [emtricitabine, FTC]. Never used Sustiva [efavirenz, Stocrin] -- no dream stories!

How do feel about your meds now?

I feel like I want to go off it, as I do sometimes. I have periodically taken drug holidays, with or without the advice of my doctor. And that's simply because there are times when I feel like I'm a slave to the medication, and I no longer want to have that feeling, and so I adopt the attitude, "It is what it is, and what will be, will be." And somehow or another, the God of my understanding has always allowed me to bounce back from the drug holidays. So that's it!

Did you begin treatment after you started recovery for your addictions?

No, actually that was a roller coaster because I started meds in '91 to '92, and I didn't get into recovery until 2000. And trying to take meds and take a trip at the same time didn't work -- just put it like that.

Did the periods of incarceration affect your treatment at all?

Actually, in the state of Illinois and county of Cook, treatment is probably better behind the bars than it is on the streets, because it truly is managed care, and you do have easy access to the health care providers. They put HIV/AIDS on the priority list.

For me, it really wasn't that difficult being HIV positive in prison. You're living inside an environment where there is the fear of people discovering you're HIV positive and being stigmatized and having to deal with the so-called bullies, but I felt pretty comfortable. I was always my own man. I have seen people who fear things like taking meds because of having a cellie who might find ways to kick them out, but for me, I knew that my health was more important than what other people thought.

By law, only the medical team is supposed to know about anyone's HIV status. The reality is that many of the nurses and doctors and health educators are having sex with the officers, so if an officer is taking care of a wing that a health care provider that they're dating has a patient on, that information does get out. I've had officers come to me and say, "You want to watch out for so-and-so, because he's HIV-positive," and I'm like, "Um ... OK! Alrighty then! How'd you find that out?" Only to find out that the officer was dating someone in health care.

What about HIV prevention in prison?

There is no HIV prevention when you're incarcerated, because HIV prevention would mean that they'd allow for the use of condoms. And that's a big debate right now -- if condoms are dispensed in the correctional system, that would promote "promiscuous sexual activity." Which of course isn't happening already, so they say. But the reality is that you take some guy who's been locked up for 15 or 20 years, sooner or later they reach a point where they've got to find love in whatever place they can find it.

What about HIV-transmission risks associated with injection-drug use in prison?

IV-drug use, I believe, is not prevalent in the penal system, simply because it's not convenient to get a hold of syringes and things like that. Plus, pretty much any facility that you'd be in, to have possession of a syringe is like having a weapon, and it is an automatic sentence of three to five years. So there's just your usual alcohol, and cocaine and heroin snorting, and there were ways that that was flowing just as readily as it is on the streets.

Have you ever had side effects from HIV medication?

Lipodystrophy! My greatest side effect from the Crixivan was the buffalo humps and the -- What else do they call them? Anyway, I lost my ass. My ass went to my stomach, and my thighs went to my shoulders, I guess. That's about the only side effect I ever had. Never had to go off anything specifically for the side effects, except the Crixivan.

How would you rate your ability to take your meds on schedule?


Do you have any special rituals or preparations that help you remember to take them?

Yes, very much so. I can pretty much count over a year's time how many dosages I've missed. When I take my night meds, I also take the next dosage out and set it on my dresser. So when I get up in the morning and put my wallet and keys and everything in my pocket, my morning meds are always sitting right there, so that's the reminder to take them.

I think Crixivan was the most challenging regimen I've been on, only because you have to take the doses eight hours apart. At that time, if I did not take the first meds until 8 a.m., I would end up having to get up late at night to take meds. And I believe you had to take it on a full stomach, and at that time I was not eating breakfast, so I had to force myself to eat breakfast to take my meds. The other regimen challenge would have been any time acyclovir [an anti-herpes drug that some doctors believe also slows the replication of HIV] got added, because that was five times a day and four pills each time.

How did you choose your current doctor?

My insurance chose my doctor. My doc asks to see me every six weeks. I hate going into an HIV specialist's office because it's always a reminder that you're living with HIV. You see people sitting around the doctor's office who have gone into the late stages of AIDS. So I miss a lot of my doctor's appointments.

Do you think you are getting the best care possible?


Is your doctor an African American?

No, he's not. He's Caucasian.

Do you think an African-American doctor can understand and treat African-American patients better?

I wouldn't think so. With HIV, it's really about knowing HIV. Anyway, my doctor treats me like a partner, very much so. There's a difference between making the statement, "You need to do X," or, "I suggest you do X, what do you think?" And that's the approach my doctor uses.

Do you have a particular health regimen that helps you stay well?

I used to work out. I'm waiting on the weather to get warmer, because I enjoy the 4:30 to 5 a.m. jog around the park. But for me, the most powerful treatment for HIV has always been a very good mental attitude. Never allowing anything to stress me out, always seeing the bottle half full instead of half empty, and always knowing that it could be worse. Because it has been!

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More From This Resource Center

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Living With HIV? African Americans Share Their Advice

This article was provided by TheBody.

See Also
Ask Our Expert, David Fawcett, Ph.D., L.C.S.W., About Substance Use and HIV
More First-Person Stories on Substance Abuse and HIV/AIDS


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