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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

Terry Johnson

March 2007

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African-American Identity and HIV

When did you first realize that you were African American?

I first realized I was of color when I was called "negro" in 1969, at the age of six. I was called black in upper grades. I was singled out in the head count for the school's office demographics. This went on all through my years at school -- how many blacks and whites in each class, they wanted an equal ratio -- and it continues today in Birmingham. They count how many boys, girls and how many blacks, whites and others are in each class.

I still struggle with the term "African American" because I feel I am an American. I am a disabled U.S. veteran who fought in Operation Desert Storm as an American. I know nothing about Africa, and I don't know of any relatives from Africa. I am just an American. I think the term is another way to cause division among the races. We don't make it a habit of breaking Caucasians down into categories of whiteness such as Irish-American, English-American or Italian-American.

How have you learned to deal with racism?

I've confronted racism head-on since I was in the first grade. I was the only little person of color in my first-grade class out of 29 other little kids. It was the beginning of integration, and a lot of the teachers and the principal did not want the coloreds in the school. I learned early that I had to be twice as good, as well as stand out as a unique person, to get recognized. This really was not new to me because I had a similar competition going on at home: I was the middle child out of five, and sibling rivalry was fierce -- for the best grades, most points on the little league team and just getting our parents' approval.

When I say I dealt with racism head-on, I mean that if I even felt the teacher or anyone was discriminating against me because of my dark skin, I would just outright bring it up. I fought to be the line leader in my class. I fought to be first to read. I was determined to get my turn, and if I could not, or was not allowed to, I wanted an explanation. My parents kept me at the school because I would not be ignored based on my race. I had something to say, and I was going to be valued. It helped me later on in life to recognize the signs of someone who was racist, as well as how to deal with racial discrimination in the workplace.

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

"My fear for the next generation of African Americans is that the disease will get out of control. I fear they will ignore all of the prevention messages. HIV is still thought of in many circles as a gay disease, but we all know it is spreading among young African-American females at an alarming rate."

I do not think that there is one set answer in discussing the challenges facing African Americans; I think it is multi-faceted:

  • First, we need to start by letting go of the stigma related to HIV and start thinking of and treating the disease as a chronic illness just like diabetes.

  • Second, we should be letting people be honest about who they are as sexual beings, ridding the community of homophobia.

  • Third, the black church needs to properly address the issue of HIV as a health crisis and not a moral judgment issue, and begin educating the community about knowing their status and getting tested.

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

Overcoming adversity through struggle and my faith are two specific aspects of African-American culture that give me strength. I feel as a people we have had to go through some tough times to get across social, racial and economic barriers, but it is our faith and trust in God that sustained us through it all.

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

There needs to be a realistic approach from the abstinence base already in place in the U.S. The Bush administration and the U.S. Center for Disease Control and Prevention's current programs and policies stress abstinence-based HIV and STD [sexually transmitted diseases] education. In actuality, people are sexual beings, and they -- kids and adults -- are having unprotected sex. More advertisements, prevention efforts and education should emphasize consistent condom use each and every time you have sex from the beginning to the end. We need to talk more about safer sex and other alternatives to intercourse, and be more realistic about what's actually going on in society today.

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

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My fear for the next generation of African Americans is that the disease will get out of control. I fear they will ignore all of the prevention messages. HIV is still thought of in many circles as a gay disease, but we all know it is spreading among young African-American females at an alarming rate.

My hopes are that everyone one wakes up and gets tested and gets educated. I hope people wake up and realize God made many different types of people and placed them on this earth.

There are men on the down-low, homosexual thugs who are not going to be honest about their sexual behaviors and don't identify with being gay because of fear. A large number of young males, because of situational experiences, have unprotected same-sex experiences in jails and prisons but do not identify with the gay lifestyle.

Another category is guys who trick and hustle for money and drugs, and prey on gay men willing to pay but don't disclose their status. The message should be to:

  • Use condoms.

  • Protect yourself and your love ones.

  • Get tested and know your status.

When I hope for education, I mean learning about HIV and the fact that it does not discriminate based on race. People need to learn not to judge or criticize people's lifestyles or choices.

HIV, Health Care and Treatment

What has your health been like since your diagnosis?

"The VA system is the single largest provider of HIV care in the U.S., which is a little known fact, because no one wants to relate HIV with our military."

My health overall has been good. I went through 48 weeks of hepatitis C treatment and had one medication-induced diabetic episode, but other than that and a little depression off and on, it has been good.

My largest obstacle has been myself, with honesty issues and actively using substances. I have battled with an addictive personality and obsessive compulsive disorder all my adult life, coupled with bouts with depression. For years these mental health issues went undiagnosed, so I self-medicated with alcohol to ease the pain and tension. I tried to cover it up. I was in denial, and I explained away the devastation that alcohol was causing in my life, relationships and career.

Addiction -- chemical dependency or substance abuse -- is progressive, so I moved on to harder drugs recreationally. I was a functional addict, but my life was unmanageable because of actively using cocaine. My mental health improved once I had that spiritual awakening and made a commitment to a life in recovery. Self-help programs work; the 12 steps work, if you work them.

Why did you decide to start and then stop HIV treatment?

I started HIV treatment in 1997 because I was encouraged to do so by the U.S. Health Resources and Services Administration guidelines at that particular time -- my CD4 counts were still in the 1000's. I stopped in 2001 after hepatitis C treatment for a structured treatment holiday. I have been off treatment for six years now and doing well so far, thank God!

How did you choose your current doctor?

I did not; he was assigned by the U.S. Department of Veterans Affairs [VA].

Do you think you are getting the best care possible?

Yes, I think the VA provides veterans with excellent care. The VA system is the single largest provider of HIV care in the U.S., which is a little known fact, because no one wants to relate HIV with our military.

Do you think a doctor's race has an impact on the health of his/her patients?

No, I do not think a doctor's race or sex has an impact on the health of his/her patients. My doctor is not African American. I think the doctor being culturally sensitive, diverse and aware of the patient's individuality and different background is what's most important. Race is not the only bias that could have a negative impact on a patient. I think a homophobic doctor could have an impact, a right wing, conservative Christian doctor could also, and so on.

My doctor is just a polite gentleman who explains the reasoning for a six-month visit versus one every three months. He explains his way of treatment so that I can understand it. My doctor does not seem to be in a hurry, and he allows for questions. I just feel that I am in a partnership with the doctor versus him dictating a protocol to me. I educated myself to be able to have conversations with my health care provider and to be able to take an active part in making decisions. I advocate being proactive rather than being reactive when it comes to my health care.

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

I believe in a healthy diet -- you are what you eat. I also take multi-vitamins and immune boosters.

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This article was provided by TheBody.com.

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