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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

Shelton Jackson

January 2006

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African-American Identity and HIV

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

I guess when I realized that everybody in my area looked like me, but when I went downtown or to the bank, no one did. Everybody in the bank was white! Then where it really hit me was in college, at Montclair State University, and we were literally the minority. It was an all-white school and there were 200 of us out of 1,000.

To what extent have you experienced racism in your life?

All of my run-ins with racism have been internal, within the black community. It's not with white people. That came in when I self-identified as gay. That's when I noticed the difference between -- like my family, as a perfect example, when they stopped talking to me. I was the good kid in the family. I was the smart one. I was the one that everybody brought their kids to for tutoring. The moment I self-identified as gay, I ceased to exist. I was no longer part of the family.

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

That is a two-parter. It is the lack of health care and the black church. Because once people test positive, there is so much stigma that people are scared to get into health care or health care is not available. That is compounded by the black church, because everything else in the black church is OK except being gay. Being gay and being HIV positive are directly related in the black church. And the black church does not teach tolerance and no matter what we say, the black church is still a cornerstone of the black community. Until they say it's OK ... that it's tolerable and we are not devils and we are not going to hell, then it will never be okay for the community as a whole.

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

Lack of knowledge. For some strange reason, these young kids think that HIV is a flake. They don't take it seriously until they are personally affected by it. They have this superiority complex that it can't happen to them. The second would be the stigma again. There is just this stigma about HIV that we as black people just can't seem to get over.

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

My support system: My grandmother is my greatest source of strength. When I came out to my family, they all stopped talking to me -- except my grandmother. I really had to look at my family and my own self-esteem to go, "OK, am I strong enough to overcome my family turning their backs on me?" My grandmother was a big supporter. She still calls me to this day, "What you eating? What was for lunch ... breakfast ... dinner?" and I never realized how much that telephone call helps me realize that somebody loves me regardless.

So I took that to the next step and said, "OK, my family is not on the same page with me. They don't want to be seen with me, that's fine. They can be replaced." I now have a new family. I have a gay mother. I have a gay father. I have seven brothers, three sisters, and a brother/sister, depending on the day. Just recently, I have three gay sons of my own, because I realize the importance of giving the younger generation a role model to follow.

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

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I would like to see more resources for after you get tested. There is this big emphasis on "get tested, get tested, get tested," but nothing much about the commotion of what happens after you get tested. If you test negative, they don't tell you there are resources out there to keep you negative. If you test positive, they don't tell you that there are resources out there on how to take care of yourself, live a normal life.

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

No. Not at all. He has completely different agendas and I could go on for hours about him. He is not my favorite person. Let's just leave it at that.

How would you grade Bush's performance?

F-minus.

What are some of the main myths about HIV that you hear in your community?

That is one I come in contact with every time I do a speech or talk about my book. It ends up turning into an HIV 101 session and you realize that these young kids still don't know the basics about HIV. They still don't know how you get it. They don't know the modes of transmission. They don't know if you can get it from oral sex. They don't know that it is not an airborne virus. I have only been doing HIV prevention for seven years. I am just baffled that people still don't know the basics.

You know, I just did my first official speech at Morgan in November, and the questions that came out of these kids' mouths were just like -- it has actually prompted me to make another project for SSJ Publishing, one of those pamphlets called the "Basics of HIV," because folks just don't know it.

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

My greatest fear is that they will repeat the mistake that we have already made. I mean, it should not take people in this day and age three years to come to terms with the fact that they are HIV positive. I want them to go, "OK, I just tested positive -- what do I do?"

My greatest hope: Again, when I was talking to the kids at Morgan, they were asking questions ... something they weren't doing years ago. They want the information -- we just have to put it out there. Once we make HIV real and show them that it is a preventable disease, that will end the decades of HIV. I truly believe that. The HIV menace will be gone in the next 50 years.

HIV, Health Care and Treatment

What has been your experience with HIV treatment?

It has been wonderful. When I actually started taking medicine, it worked right away. The strain of the virus that I had was very susceptible to medication. My numbers shot down. I am now second-generation undetectable. I have 525 T-cells -- up from three just three years ago. I have had a little setback because two years ago I wasn't taking my pills like I was supposed to and I developed some resistance to a drug. But once I changed my combination, I stayed undetectable and my T-cells are just steadily climbing.

Have you been sick?

The only time I actually got sick was when I had an ulcer toward the last year of my partner's life. I was so worried about him that I stressed myself out. It really, really messed me up. It took me from 150 pounds to 100 pounds, but I recovered.

What HIV medication have you been on?

For the last two years, I've been on Viread [tenofovir], Norvir [ritonavir], Reyataz [atazanavir], Ziagen [abacavir] and Videx [didanosine, ddI]. It's about seven pills, which is a lot for this day and age because they have combined everything. My doctor actually hates my regimen because he says that I am on too many pills. But I'm like, "It's working and I take them all at night. If it's not broke, don't fix it." As a patient, I am very outspoken for myself. I think they tried to put me on everything at one point or another, so when something has a bad taste or the side effect doesn't rub me the right way, I am very vocal about saying, "I don't like this -- let's change it."

What kinds of side effects have you experienced from your meds?

One was from Epivir [3TC, lamivudine] -- the neuropathy, the tingling of the toes and fingers. That was the one that I actually developed a resistance to because I just stopped taking it because it just whacked me out! The other one was Sustiva [efavirenz, Stocrin]. It gave me really, really vivid bright colorful dreams. It was a little freaky for me, so I told them to take me off that.

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

From one to 10? Um ... now ... 10! I am on it like glue now. If I'm not, my partner is right there on it with me.

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

No. I just try to keep it in plain sight so I can see it -- on my nightstand. It's the last thing I see before I go to sleep.

How did you choose your doctor?

When I was in New Jersey, a friend recommended a doctor he was working with. It was one of those all-inclusive programs -- doctor, nutritionist, mental health specialist, group counseling, help with your bills, everything. When I moved to Baltimore, one of the biggest things for me was, "I love my doctor ... I don't want to leave my doctor!" But when I got here I did the survey of the services in the area, and then asked a couple of people who were HIV positive where they went and about their experiences. I'm a very organized person, so when people say, "I go in there and I'm in there for hours," I say, "I'm not going there." If my appointment is at 10, I need to see the doctor at least within the hour.

How often do you see him?

I see my doctor every three months now.

Do you think you are getting the best care possible?

Yes I am, actually.

Is your doctor an African American?

No, he is not.

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

My doctor in New Jersey was an African American. The only difference I see in the treatment that I receive there and here is that he would talk to me. He wanted to know what was going on in my life. He gave a damn, basically. And my doctor here is, "Is there anything wrong with you? Do you have any questions? Is there anything I need to know? No? Then let's take some blood work and go on about your business." He's very efficient. He is very good at what he does. But he doesn't take the time to sit down and chitchat and all that stuff. But from my black doctor, I actually felt like he cared.

Does your doctor treat you like a partner in making decisions about your health?

Yes. But that is because I don't give him any other choice. I am not one to just let people tell me what to do. If he suggests something and I don't know about it, I will agree for the moment -- but I am going home to do my research to find out exactly what he put me on. I'm still in contact with my old doctor, so it's easy to send him an e-mail saying, "What is your advice on this?

Do you have any wellness regimen that helps you stay healthy?

Being a writer, I don't get out much. So, every now and then I just need to stop working and get out -- even if it's just to take a bus ride downtown to the harbor and go have lunch outside and be amongst people. And to take that a step further, I try to get out once a month and do something gay. Just so I know that I am not the only black gay person in this area. Just so I won't feel so isolated in the house, because this is where I do all of my work and sometimes it can get rather lonely.

Do you participate in an AIDS service organization?

I work with the Gay and Lesbian Community Center of Baltimore. I am on the advisory board of a group called Kevon's Room -- a group of youth that run all the programming, do the HIV outreach prevention, pass out the condoms, set up meetings with other ASOs to combine services. I am also a mentor for the younger kids in the group.

Have these organizations been helpful in improving health?

To me, it really just lets me give back to the younger generation ... to the folks that are coming up behind me. Just the way my boss in New Jersey took me under his wing and taught me everything that there was to know about HIV. Just being able to pass on what I know as being a positive black gay person. That helps! That helps me a lot.

Do you consider yourself an AIDS activist?

Yes, I do. I do. People like that title. I'm not big into titles.

What does activism mean to you?

To me, it means a person that goes out and promotes HIV prevention or awareness And that I do.

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This article was provided by TheBody.com.

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