The Meaning of Leadership in HIV

The Human Immunodeficiency Virus: a retrovirus only 120 nanometers in diameter. It is 60 times smaller than a red blood cell and yet has killed more people than World War I, The Civil War and The Vietnam War combined. The most apt descriptor of HIV is that it is simply infectious and just in an epidemiological sense. HIV can take a community and eat away at it from the inside, leaving people bereft of hope and despondent. Theoretically, HIV doesn’t discriminate based on age, race, gender or socioeconomic status. And yet, here in Baltimore, we are disproportionately affected by this disease. We are in the top 5 in the nation in a category that you don’t want to on top of. In our own backyard, the 21201 zip code that houses The JACQUES Initiative and The University of Maryland-Baltimore, almost 6% of the population is HIV positive. Yesterday, leaders from the HIV, academic, business and healthcare communities came together to begin the arduous process of preparing a future where HIV is no longer a chronic and insurmountable public health issue, but is clarion call for neighborhood and city unity.

One of the biggest messages I took away from The Leadership in HIV Summit was that HIV in and of itself is not a bad thing; nor is HIV a good thing. It’s just a thing. A virus has no morals or diabolical intentions towards us. Any meaning that is ascribed to HIV is given by people to people as a way of labeling behaviors that are seen as deviant or improper. No one blames a woman with breast cancer for her circumstances and there is no stigma clouding the mind of someone with a bronchial infection. What HIV represents to us individually and as a community is up to us to decide.  I saw a huge assembly of people from all over Baltimore and other communities together who may have never experienced one another were it not for HIV. Would the deans and schools of nursing, medicine, social work, law, pharmacy and dentistry at the University of Maryland-Baltimore have all come together for an event without HIV as a driving force? How much attention and advocacy would severely impoverished HIV+ neighborhoods like Druid Hill Park or Union Square get without the catalyst of HIV care? Now that HIV is a chronic, treatable disease and not a death sentence, HIV has the possibility of unifying disparate communities not only for HIV care, but for a whole host of other psychosocial issues as well.

Our community, our city, our duty.

While I can only speak to the affinity and interdisciplinary sessions that I went to, I will say that there was a remarkable amount of passion and commitment among most everyone involved. Sometimes this took the form of brainstorming possibly revolutionary ideas about advocacy, education and treatment. At other times it was let out in spurts of disbelief and anger at the way people had seen HIV overlooked, ignored and mistreated in our community. Most of the participants were students, with faculty, healthcare professionals and JACQUES employees scattered among them. And even with this diverse grouping of people, it seemed like everyone had a personal or professional story about dealing with HIV, regardless of whether they worked specifically with HIV or not. HIV in no way defines us or anyone in our communities, positive or negative, but it does color our experiences. We close our eyes to HIV as a public health and social issue because, no matter where we open them, we will see HIV’s impact looking us back in the face.

This leadership summit was an event that signals the beginning of what we hope to be a movement, and I don’t use that word lightly. Sitting in the community town hall meeting that closed our event yesterday, I was heartened to see all manner of people together, united by a single cause and willing to change for it. From reverends to scientists and from doctors to patients, there was an overwhelming desire to restore the dignity of the individual in Baltimore and to lift up our neighborhoods as examples of togetherness and strength. Often, in the wee hours, it can seem like all of our efforts were for nothing; that we’ve been running on a treadmill for the past 30 years and no matter how fast we run, we always end up in the same place. People get burned out doing this work and we all need to get together every once and a while and let each other know that we’re doing good. We need to change and we need push through, but we’re all giving some small part of ourselves to one another in the process. The only way we get to zero new infections, deaths and discrimination is by becoming stronger as a community so we can draw strength and resources from one another. Leadership, within the context of our summit and our mission is not solely an individual attribute. One man or woman is capable leading, but progress only happens when everyone else joins them at the front.

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