The Problem of Stigma
By Rae Lewis-Thornton
February 7, 2012
This piece originally appeared in Rae's blog, Diva Living With AIDS.
Today is National Black HIV/AIDS Awareness Day and for me that's bittersweet. Let me explain. I'm happy that African Americans are coming together across the country to bring awareness to HIV/AIDS, but sad that it seems, no matter how hard we work, the number of HIV cases continue to rise.
The CDC says that Black folks are 44% of all new cases of HIV in the United States and nearly half of all cases of HIV in this country. It seems the more things change for the better around HIV/AIDS, the worst it gets in the Black community.
There is so much good news around HIV/AIDS. Treatment is so much better than that single treatment of AZT I started taking in 1992. Testing for HIV is a swab in the mouth with test results in 20 minutes. There are socially conscious condom companies like B Condoms promoting prevention and responsible sex. There are more Black organizations tackling HIV/AIDS than ever and even large numbers of Black churches are doing their part.
Yet the numbers of cases continue to rise. So what is the freaking problem? Now, I don't have all the answers, just some insights to this complicated issue. First off, there is still a lot of stigma and shame surrounding HIV/AIDS. This problem didn't start in the Black community, it started in American society as a whole. I remember the days of fear, when nurses refused to touch people who were dying of AIDS, funeral directors refused to bury and pastors refused to perform funerals and mothers and fathers left their dying child to die alone.
Those early days of AIDS set the barometer for AIDS. I remember Jeanne White, the mother of Ryan White told me one day that a rumor was going around in her small town that Ryan, who was a hemophiliac, contracted HIV because she was a nasty homemaker and didn't keep a clean house, rather than blood products he received for his condition. For Real, I couldn't make this shit up if I tried. I have countless stories that are just as mad as this.
The stigma around HIV created an enormous amount of shame for people living with HIV/AIDS and their family. This stigma is embedded in American culture. In the 21st century it's become politically incorrect to talk negatively about HIV and people living with HIV openly, but the whispers float in our society just like the air we breathe. I can understand at one level the Black community saying, "Not Me!" I mean who wants to admit that HIV is rampant in their community. Shoot, I kept my infection a secret for seven years because I was afraid that people would judge me. Still today, I get nasty tweets about my dating and sex life, but I tackle it head on.
Stigma for the most part drives this disease in many ways. Let me explain. People are afraid of going to get tested for fear that they will be judged. Many private doctors will ask their patient, "Why do you think you need an HIV test?" And by doing so, their behavior has been called into question. While other doctors have gone as far as to say, "You don't need a test, you're in a monogamous relationship" or "you're married." When in fact, everyone -- including the doctor -- needs an HIV test. Other options for testing are in a HIV clinic or at a Department of Public Health and many people are afraid of being "spotted" in one of these places.
Now let's take that as our baseline: Fear of getting tested for HIV because of being judged. Now, the CDC says that 38% of newly infected people are infected by people who didn't know they were infected. And contrary to belief, statistics show that most people with HIV don't want to deliberately infect someone. So, it stands to reason if more people knew their HIV status, less people would be infected.
That's why testing is important. Lets' take it a step further. New data shows that if an infected person is in proper treatment then the chances of them infecting their partner is minimal. So, knowing your HIV status is key.
Now let's take treatment. Many people are afraid of being seen in the AIDS clinic so they don't keep their appointments and some forgo treatment altogether, rather than being spotted. I can't make this stuff up. I have a friend in her early days of being told her HIV status who scooted down in the seat of her car in the clinic parking lot, because she saw someone she knew in the lot. I have yet another friend, who stopped being my friend because other friends of hers kept asking how did she and I become friends. And yet another friend, a doctor nonetheless, who wouldn't take her medication because she didn't want her colleagues to catch her taking it.
Another issue closely related to proper treatment and testing is disclosure. People live in fear; If they know their HIV status, how will people treat me and if I tell, will they still love me? There are many family members who instead of providing support, just simply gossip. Then there are other family members who never discuss it. If HIV is not a welcomed topic in a family, it isolates the infected person. Isolation leads to depression, and depression leads to noncompliance. When people are depressed they have no will or desire to take medication or make doctor appointments and for that matter disclose their HIV status to future partners for fear of rejection. I mean if I'm being rejected overtly or covertly in my family, why would I believe anyone else would want me.
I hope you get the point, it's a tangled web we weave with stigma and it helps to fuel the new cases of HIV in the Black community. But I believe we can change this with personal responsibility that starts with you and trickles down to the community. One that says HIV/AIDS is a medical condition and not knowing my HIV status is not taking the best care of myself.
At some point, we have to take ownership of this disease. The African proverb, "He who conceals his disease cannot expect to be cured," it true. If we don't own it, we can do nothing about it.
Taking ownership fuels personal responsibility and challenges stigma. Have a conversation with your boyfriend and girlfriend about condom use and testing. If you care enough about each other to lay in bed together, then you should care enough to go get tested together and honestly use condoms without judgments about what he/she may or may not be doing behind your back. Just understand that in the 21st century, shit happens and you need to be as prepared as you can be.
If we take ownership we challenge stigma. Sisters and brothers should go get tested together. Taking ownership is having that conversation within the family. If you have an infected family member, call them and have that conversation about how you can honestly support them. People with HIV/AIDS need more than prayer.
Take ownership, have educational programs in our churches, ask your pastor. What harm could that do? He/she may surprise you. All of our organizations should be talking about HIV/AIDS on a regular basis. The more we talk, the more we put to shame stigma. Black folks have never been this small. The things that affect our community, we have tackled them head on. We cannot allow the history of stigma in this country to fuel how we address this issue. To do so is condemning a generation of people to death. We are better and greater than HIV/AIDS and we can show that by fighting stigma at its core. I Am My Brothers/Sisters Keeper! Change will only come because we decide to make it so!
Rae Lewis-Thornton Speaks
Rae Lewis-Thornton is an Emmy Award-winning AIDS activist who rose to national acclaim when she told her story of living with AIDS in a cover story for Essence Magazine. She has lived with HIV for 27 years and AIDS for 19. Rae travels the country speaking and challenging stereotypes and myths about HIV/AIDS. She has a Master of Divinity degree and is currently working on her Ph.D. in Church History. Rae has been featured on Nightline, Dateline NBC, BET and The Oprah Winfrey Show, as well as in countless magazines and newspapers, including Emerge, Glamour, O, the Oprah Winfrey Magazine, Jet, Ebony, the Washington Post and the Chicago Tribune, to name a few. She earned the coveted Emmy Award for a first-person series on living With AIDS for Chicago's CBS News.
Rae is an active user of social media -- read "Long-Term HIV Survivor Discovers the Power of Twitter," an article on TheBody.com about Rae's social media activities.
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March 5, 2014 - Aging with HIV, Part Two: A Blog Entry by Rae Lewis-Thornton
March 3, 2014 - Aging With HIV/AIDS: A Blog Entry by Rae Lewis-Thornton
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