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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?


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?


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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More From This Resource Center

Magic Johnson Wants You to Know: He Isn't Cured of HIV

Living With HIV? African Americans Share Their Advice

This article was provided by TheBody.

See Also
More Personal Stories of Gay Men With HIV

Reader Comments:

Comment by: Trent (brooklyn,ny) Sun., Mar. 7, 2010 at 1:23 pm UTC
Its been a year ,i miss you soo much...
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Comment by: Mon., Jan. 11, 2010 at 1:29 pm UTC
R.I.P SHelton
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Comment by: K. Robinson (Newark, Nj) Sat., Oct. 10, 2009 at 2:13 pm UTC
R.I.P. Shelton, I went to high school with Shelton and he was such a genuinely sweet and kindhearted person. I lost my mother from this disease at the age of 15 and have a father that has been battling this disease for more then 13 years. I truly found inspiration from Shelton, and remember take your meds, wear protection and love yourself.
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Comment by: Quadia (San Francisco, CA) Mon., Aug. 10, 2009 at 2:02 am UTC
Shelton--Rest In Peace. It's difficult to read this knowing that in the year 2009 people are still dying from aids more than twenty-five years after... I lost two brothers to AIDS. One was 33, the other was 39. That was then--there were no 'real drugs'. Note: I always call people evil. "You are just evil," or "He's evil." get it. It's like "Bitch" -- to me. I had no idea "evil" meant homosexual. I just thought it meant someone who is dangerous and just not nice--someone I want to avoid--or just a light dis...
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Comment by: ezelagbo (Nigeria) Thu., Jun. 18, 2009 at 12:58 pm UTC
Dear Nates, you can read Shelton's blog and get more information about his last days on earth you will have a clue to how he died.
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Comment by: LaRon Martin (Staten Island,New York) Tue., Jun. 2, 2009 at 12:10 am UTC
Shelton; even though it has been 3 months since your passing, I still miss you my friend. Shelton had brought so much to my life. He saw things about me that I didn't want to see. He gave me tough love about myself. I've been reading so many responses since Shelton death and I CAN BELIEVE THAT SHELTON WAS LOVED BY SO MANY PEOPLE BECAUSE HE WAS TRULY AN ANGEL FROM GOD.I can say that I NEVER met a person like Shelton before. He was truly in a class by himself. I also read other remarks about some of the choices he made in his life. No one is perfect, but you try to learn from your mistakes and hope you can teach others to try not to make those same mistakes you did. If everyone was perfect,this would be a dull world. I do commend Shelton for sharing his life, wisdom, and knowledge with people he didn't even know. Shelton in the short time that we had known one another, I am truly honored to have had you in my life. LUV YA my brother and until we meet again..... To everyone out there who is reading this, PLEASE WHAT EVER YOU DO; DON'T FORGET TO TELL YOUR LOVE ONES THAT YOU LOVE THEM BECAUSE TOMMORROW IS NOT PROMISE.
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Comment by: Mon., Jun. 1, 2009 at 11:38 pm UTC
Shelton, even though it has been almost 3 months since your passing, I miss you very much. I am so happy that a person like Shelton had entered my life. He had brought so much wisdom and honesty into my circle.
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Comment by: corey (MD) Thu., May. 21, 2009 at 9:16 am UTC
Nate: I believe shelton was not taking his hiv medications. It's a hard lesson. But if your CD4 count is low and your viral load high and you are not on hiv medications, really bad things can happen. You really have to take those medications!
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Comment by: Nate (Oakland, CA) Mon., May. 18, 2009 at 4:28 pm UTC
I recently found out I was HIV+ and found comfort and hope in reading Shelton's words. As I was reading I felt I was getting to know him. I found hope and inspiration from him. I was hoping to contact to him. Needless to say, I was shocked and deeply saddened to read at the very end of his bio that he had passed away. I don't quite understand, I thought (and had hoped) that drugs today keep people alive for a long long time. That we could live long lives. I assume Shelton passed from an HIV-related illness. Does anyone know for sure what he died of? It's strange, I have never met Shelton, but I miss him. And I know the world has lost one of the good ones. Be good and be well to you all!
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Comment by: tony (nj) Tue., Apr. 21, 2009 at 5:23 pm UTC
Had the pleasure of meeting this wonderful brother just once over dinner. This man was a difference maker. He is no longer with us, he was called Home. He will surely be missed. But his work will go on. We all need to know our status, whether straight or gay. EVERYONE!!! Please check out his works/blogs/etc and everything you might find and pass it on. We (people of color) have been in the dark way too long. It's time to embrace our brother/sisters across the board.
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Comment by: Anonymous in Pretoria SA (south africa) Wed., Apr. 15, 2009 at 10:30 am UTC
His story made me laugh a bit because I saw a bit of me in him, just disappointed that he is gay. He is so cute. Yes I am a woman and positive that is why I kept my identification cause in SA people are still not educated with this fact and there is a lot of stigma. Shelton if you not mind can i have your email address or numbers. you said something about drawing strenth from others and maybe i can draw that from you. And yes i will give you my name just not sure if i am ready for the whole word to know.
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Comment by: rui (New york) Thu., Mar. 19, 2009 at 12:04 am UTC
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Comment by: Billie (Devon - England) Sat., Mar. 14, 2009 at 4:25 pm UTC
As a hetrosexual married white lady married to a guy from Barbados and who contracted hiv 2 years ago, I would just like to say, that reading Shelton's story as inspired me to keep on at my husband who is still in denial. But mostly I would like to add this comment -- Shelton I would have loved to have known you as a friend, your hiv status would have meant nothing to me, but by reading your answers in this article about you, you were a human with so much heart, compassion and love. I know with all my heart that tonight your with our Lord and maker safely tucked up in his arms. God bless and keep you safe now forever. Never knew you, wish I had, but like your Grandmother I'd have stuck fast to your side.
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Comment by: Kia Fri., Mar. 13, 2009 at 10:02 am UTC
Rest in peace Shelton!
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Comment by: Justin B Smith (Laurel, Maryland) Mon., Mar. 9, 2009 at 12:14 pm UTC
Shelton Jackson and I met a couple times though I did not know him very well I am truly saddened about this tremendous loss that the world has suffered. I wish I could've known him better. I know he is in a better place now. I feel that I have to pick up where he left off. WE NEED TO FIGHT THE GOOD FIGHT. Education, Awareness and Prevention. We as a people need to fight HIV -- it's killing our people. Our people meaning black, white, hispanic, asian etc.

For Shelton Jackson, my friends infected and affected by this disease, who are living and dead, I fight. We will miss truly miss you spirit, soul and smile. We love you Shelton and thank you for all those you have and will touch

Justin B Smith
Justin's HIV Journal
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Comment by: Trent (Brooklyn,ny) Sun., Mar. 8, 2009 at 6:29 pm UTC
I met Shelton 5 years ago. Ever since then we were friends. I never met a person that was as caring and warm hearted as he was. His smile brightened the room as soon as he walked in. Even when work was taking a toll on me being a NYC police officer, he knew how to make me smile. My heart feels heavy and saddened ever since i learned of his passing. I miss him already, our talks on the phone or our trips to the movies but i know he's in God's arms. Shelton I love you and you'll always be with me always may god keep you.
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Comment by: kareem clemons (nyc) Fri., Mar. 6, 2009 at 11:12 pm UTC
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Comment by: Kritzmoritz (lagos) Thu., Mar. 5, 2009 at 7:09 am UTC
I am ultra sad. I did not realize that AIDS is still a major menace...that it still strikes people at 28 years. My heart aches, cos it tells me what's ahead for me
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Comment by: Karima Jackson (Newark, NJ) Wed., Mar. 4, 2009 at 1:38 pm UTC
R.I.P Shelton "Snoop" Jackson. Your family loves you and honors your memory. You will forever live in our hearts. You are an inspiration and a constant reminder that life is precious enough to fight for and live to its limits. You have touched so many lives and given so many people a voice who probably otherwise could have never imagined being heard. We now all shout at the top of our lungs... "We Love You...And Miss You"
-Your Lil Cuz, Karima!!!
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Comment by: Keva Tue., Mar. 3, 2009 at 10:33 am UTC
Just wanted to say that Shelton passed away yesterday. March 2, 2009. He fought a good fight. He now has his wings to go anywhere he want to go. Rest in peace my dear
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Comment by: Dave (Washington, DC) Sat., Jan. 31, 2009 at 1:21 pm UTC

I have not seen you in over 4 years. The last time I saw you was when you were celebrating your birthday in a DC nightclub in NE DC. I am very glad you are still focused on your personal and professional ambitions. Have you investigated or the Foundation Center as viable funding sources? Since you live in Baltimore, MD consider buying a 4 unit apartment building. Live in one unit and rent out the remainng three.

Congratulations on the new relationhip. Stay strong. Stay Blessed
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Comment by: Miracle (NJ) Fri., Jan. 16, 2009 at 5:52 pm UTC
Can you please recommend the doctor that you used in NJ?
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Comment by: Luca (UAE) Wed., Nov. 19, 2008 at 9:52 am UTC
I just tested positive while applying to a job. Three month ago I have been to hospital because of what seemed to be food poisoning. I asked to be HIV tested and it was negative. Two days ago I tested positive. I resigned from my job because in this country you cannot have a residency permit if you are HIV+.

I will need to link with HIV+ people to know how to deal with all that. I already informed my sister who will support me. But I also live in a country where being HIV+ cannot be revealed. I will be going home asap and will see a specialist. I am 34 years old and I am confused and freaking out. I feel like I'm jailed in my own body. When I look around to people in the street I know and understand what a luxury it is to be in good health. I also say I will try to keep what I have at this very moment. I will do my best, but I need your support guys.

I admire your courage and strength. I will need to meet HIV + people like me and see that they are living.
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Comment by: clueless (nashville) Fri., Nov. 14, 2008 at 10:04 am UTC
Hey! I am really am proud of you and how strong you are. Remember life is always great as long as we have Jesus in it. No matter what you are going through, Jesus is on your side,believe that. I'm a woman with a lot of belief. I'm not positive for a desease, but I am positive that you are a blessing from God. No matter what you have done, we are all God's children and' yes' Jesus loves you. Continue to take care of yourself. love, clueless.
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Comment by: annette Tue., Aug. 19, 2008 at 5:54 pm UTC
im still dealing with myself of having hiv
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Comment by: Robyn Franklin Fri., Aug. 1, 2008 at 10:12 am UTC
Hello Shelton. You probaly don't remember me but I use to be the supervisor for POWER in Newark at UMDNJ. Jason, Whaeedah and I are still stay in touch. Jason told me you were doing well a couple of years ago. I loged onto thebody and saw you! I was like I know him!! I am so proud of you with your writing career and all. Represent for Newark! You go boy. I moved down to Maryland in 2003. I live in the Laurel Bowie area. I would love to hear from you. Please write back or call. I still have my NJ number.

Thanks for your inspiring piece as well. Sharing your story helps many people to stay strong and life is worth living. Hope to hear from you.
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Comment by: Fattflietly Tue., Jul. 1, 2008 at 4:30 pm UTC
this bonus ;)
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Comment by: Latisha Harris Sat., Jun. 21, 2008 at 10:29 am UTC
This story is so inspirational. I work with HIV positive transgender population and I look for ways to encourage them. I hope you don't mind but you will be the talk of group Monday. In Louisiana you have to be creative in your approach when it comes to HIV treatment. State government know we have a problem but they won't listen until the problem reaches their own back door. Typical of the south. Thanks again for the story. I know I won't be the first and surely not the last you are making a difference. Thanks again.

Latisha Harris
Baton Rouge, La.
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