The Road Less Traveled
In 1989, when I was working for the South Carolina Department of Education, I met a State Senator from one of the most politically conservative regions. As we stood in the lunch line during a training, she pleasantly asked me about my views on HIV and our state's approach to our growing epidemic. Being a novice to politics, I was open in sharing my impressions, which were based upon my grassroots advocacy work with DiAna DiAna (a controversial hair dresser who created the first HIV prevention efforts done in a beauty salon) and what I had learned from students I met as a state health consultant.
She indicated that she wanted to talk more and invited me to meet at her office. When I did, I was escorted into a large board room and saw at least ten other individuals. I was taken aback to recognize several health officials. No introductions were made and I was invited to sit at the head of the table. I realized I was being ambushed.
I was questioned about my views on sex education and AIDS. Over an hour later, the interrogation ended with the State Senator basically questioning whether I wanted to keep my job.
That event continues to shape my HIV advocacy. It taught me never to go into a situation without asking questions about the who, what, and why. It solidified my understanding that in any struggle, we must each find our unique place. Some must be ready to take a direct hit, perhaps even committing civil disobedience. Others can work within the system. But everyone must ask: What type of advocate am I? What am I prepared to sacrifice? The answers to these questions will shape our thoughts, actions, and effectiveness.
I shared with my family that I would not deviate from my mission. I knew my employment might be the sacrifice, but my spirit would not let me move from what I knew was true. The fact is, I was competent in my subject matter and knew I was following the mandates of state law. But I was being asked to use my expertise and years of experience in human sexuality on behalf of a government agency mired in conflict. In addition to teaching students about HIV, STD, and pregnancy prevention, I was charged with educating school administrators and teachers on school health law. But I was challenged far too often by local school districts that had no intention of following a state law designed to curtail the spread of a highly stigmatized disease. So I let my final days at the department become my training field. I constantly addressed with my superiors the most effective strategies to inform teachers and students about HIV.
But whenever I left the state, I seemed to face a political crisis upon my return. It was as if the conservatives who hated sex education knew when I was out of town. In 1992, while attending an AIDS conference in San Francisco, I received a call from Dr. Nielsen, the State Education Superintendent, on a matter she deemed highly sensitive. She said I was to report to her office immediately upon my return. When I did, she informed me that I had been called to testify before the South Carolina Education Subcommittee to answer allegations that I was corrupting the morals of minors. The basis for the charge was my use of a penis model to demonstrate the proper use of condoms with high school students.
On April 22, 1992. I faced five members of the subcommittee to respond to allegations that my methods were creating "monumental risks". Dr. George Rekers, a behavioral science professor at the University of South Carolina School of Medicine, testified against me. He claimed that viewing a plastic penis posed significant risks for young girls. He said that seeing it could break down their "natural reluctance to view male nudity and make them more likely to have sex." He went to say, "Viewing the penis could even lead to sexual arousal or trigger post-traumatic stress disorder in girls with a history of sexual assault."
I was told to demonstrate my methods, but I respectfully refused, noting that it would only distort the purpose and context of the activity. I instead invited them to attend an entire health education session that evening for unwed teen mothers, during which I would use the penis model. Not one chose to attend.
But the media did show up in full force, resulting in a frontpage article. Numerous articles, letters to the editor, and personal opinion pieces were published in the months to come. Many were supportive, some not. More important to my survival were the number of professionals in the fields of health, psychology, and sociology who boldly and publicly supported me. Others, concerned about their personal job security, distanced themselves from me. In the end, the state Department of Education did not ban use of the model. They were aware of South Carolina's high rates of HIV, STD s, and teen pregnancy, and felt that detailed lessons were needed to prevent them.
I knew I had done the right thing. I never defined that moment as "advocacy", but I knew someone had to stand up and ensure that young people in South Carolina had an opportunity to get accurate HIV/STD information. So, several other African-American leaders and I created the South Carolina HIV/AIDS Council (SC HAC). I've served as Executive Director since 1995.
And we have never abandoned advocacy. It is not unusual for me to read the local newspaper to locate meeting spots frequented by legislators and leaders and then ensure that we are on the scene. We've spent over a decade nurturing relationships with legislators who have served as mentors. We can't afford a lobbyist, so we request advocacy help from lobbyists willing to get "the lay of the land" on our behalf. Pharma partners like Janssen, Gilead, and Brystol-Myers Squibb have provided skills training, underwritten advocacy expenses, and helped make our state mobilization efforts successful. We are not afraid to ask for help, because we know what happens to community-based organizations that have an ego bigger than their bank account.
Working with national advocates like the Ford Foundation, Southern RE ACH (AIDS United), and the Southern AIDS Coalition, we took on the task of increasing our state's ADAP funding. We orchestrated six local community forums with mayors, hospital administrators, business owners, political strategists, and neighborhood association heads, who had never entertained the notion of AIDS -related advocacy. In the end, we were successful, with funding rising from just $500,000 to over $5 million.
South Carolina remains one of several southern states that have made it clear that the expansion of Medicaid offered under health care reform will not be accepted. So last December, I spearheaded our state's first press conference and community forum on the Affordable Care Act and Medicaid Expansion. It was the result of a coalition of the South Carolina HIV/AIDS Care Crisis Task Force, the Harvard Legal Center for Health Law and Policy Innovation, and the newly formed Accept ME (Medicaid Expansion) Coalition, which is comprised of over 30 community health advocates.
Today, like many other community-based agencies, SCHAC faces tremendous uncertainty due to health care reform. I've committed myself to advocating for my agency. If I fail to advocate for those I serve, then I've taken the path of mediocrity. Instead, I'm taking the road less traveled -- a road I have often taken. I chose to stay in a southern state with a deep history of slavery and economic oppression. I chose to fight for people with HIV in a state that often ignored their needs. And I chose to fight for them when others said it was a losing battle.
My journey in AIDS advocacy has taught me that we must not take the easy road. Interruptions, hardships, and problems should be anticipated. And I've learned that the road less traveled actually has many positives. If nothing else, I know who does and does not have my back. I know that my choice to be an AIDS advocate will be my greatest achievement and that I went out boldly and gave it everything my soul could muster.