The Intimate Act of Disclosure
A World AIDS Day wish for countering HIV stigma with earnest empathy
As we approach another World AIDS Day I find myself reflecting on one of the most troubling elements in our discussion moving forward. It is a barrier that continually hamstrings our efforts to create real change and fully actualize the turning point of the epidemic.
That troubling element is the stigma, discrimination, blame and collective denial associated with HIV infection. We must confront stigma and its chilling effect on prevention, care and policy. The active and meaningful participation of people living with HIV is essential to a comprehensive and effective response to HIV.
We can think of stigma as the idea of something being disgraceful, something socially unacceptable. This perception of shame prompts us to distance ourselves from the act, action or person associated with the stigma. That distance only reinforces the negative stereotypes of how HIV has entered people’s lives. The imagined belief of how HIV enters a person’s life is in many ways is the least important part of the conversation. But from the beginning of the epidemic we have judged transmission to the point that we erase the person and focus on acts, causing stigma and separation.
It is the judgment and mistrust created by stigma that affects policy, prevention and even public perception – with chilling results. Stigma hampers our ability to effectively implement programming to help us make the greatest possible strides in countering the epidemic. Stigma helps the epidemic spread, out of sight and underground. It prevents targeted populations from adequately addressing the impact of HIV/AIDS in their local communities.
One of the first things we must do is look inward and reflect on what we can do at the individual level to confront stigma. We truly can make a difference by rethinking and readjusting our approach, starting with one of the most basic and powerful tools for change: our interpersonal interactions and language.
Though it seems simple, sometimes it’s the simple things that have the greatest power to create lasting change in society.
Because language is what creates community, it is important to choose words thoughtfully. When we engage one another around issues of disclosure and understanding, we can see that stigma hinders our ability to create a clear picture of an individual. As a result, we rehearse time-honored scripts too often steeped in naiveté and ignorance. Examining the origin and impact of these scripts allows us to unpack old useless baggage and fill these new voids with compassion and understanding.
It’s when we begin to make ourselves vulnerable and open that we feel empathy, that we allow ourselves to understand the unique humanity that resides in each of us. In this understanding we gain the ability to see individuals not as the unknown mysterious other, but rather as sisters and brothers of shared commonalities that allow us to connect and engage beyond the divide created by mistrust, ignorance and our lack of understanding.
To break down this barrier to understanding, we must alter the way we view our conversations. When people disclose their status to you, they are opening outstretched hands and offering the keys to a very personal piece of themselves. They simply ask that you equally open up and reach back to bear witness to their inner truth. In this moment we let ourselves experience vulnerability, which is essential to making the transition to changing the course of the epidemic. This transformation in belief brings into question the basis of our fear and hatred of otherness. Only by adopting a politics of vulnerability can we escape the devastating condition that stigma causes.
Dec. 1 is a day when people are looking for action. Getting an HIV test is a powerful action. But equally powerfulIn that moment a person is holding sacred the vulnerability and trust given to them you during an HIV disclosure. Take time to recognize and affirm someone who does this, bearing witness to this great act of human compassion.
This is not call to simply reach out and embrace someone else. I am asking you to reach out and make yourself vulnerable to understand the shared commonality that you have with another individual. I ask you to look beyond the distinctions and remember that we are all humans trying to live, laugh and love in this world, more alike than different.
Matthew Rose is a member of the community advisory board that serves the Vaccine Research Center at NIH. He also serves on the organizing committee of the Young Black Gay Men’s Initiative. Follow him on Twitter @MTKRose.
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