In the context of HIV/AIDS, continuum of care means different things. In the US it begins with ‘testing’ and in Brasil starts with ‘promotion’ (of prevention information and testing services). Pretty close to the same starting point, yet in Brasil it’s called a ‘cascade’ approach. Explicit to both public health models is the idea of reaching people early and that one thing leads to another. Implicit is the need for these models and programs to reach people where they are, spanning-to-fit diverse age, race and cultural experiences — e.g. rural to urban — and deftly navigating the geographic and demographic crossroads that comprise ‘vulnerable ‘states’.
Over the past three years since I tested positive on a trip home from Brasil to NYC, I’ve been trying to watch my new self, wondering what would change in my head and my body. The body is much easier to survey. Different things can happen in the head. Sometimes meds will change a person…in the head. Stigma is an internalized thing that also sits in the head.
Just yesterday, I met with a professor from the University of São Paulo’s medical school who oversees a research group on ‘quality of care’. We speak across English and Portuguese. We are talking about her upcoming trip to intern at New York State’s AIDS Institute, and introductions I will make to help her research in NYC. In our comparing what I know about NYC and what she knows about São Paulo — including vulnerable populations and practices — she finds words for an oft issued idea: ‘they seem to want to get it’.
There is popular language for this like ‘bug chaser’ and there are sociological studies of the ‘bareback community’ in different measures. There is the term ‘zero conversion’ used when a man contracts HIV and aligns — or to align — with his lover. Phrases like ‘harm reduction’ or ‘harm avoidance’ are also used.
Back to changes in the head. I don’t remember ever feeling like a ‘chaser’ … this conscious looking for it that I hear referred to. But was I looking for something unattainable out of sexual intimacy? Did I underestimate its unattainability and exhibit the persistence of repetition? Did I enjoy myself despite its longitudinal failure to enlighten? And what was it I was looking for parallel to this incremental enjoyment?
Here is where we want the blur to create distance. Here is the place in the story that we do not directly indict our relatives and the extent to which their varied normativities prevent one from feeling at home within the family’s applied demarcation. Here is when we do not ask big questions like why live so far away from that elusive ‘home’ and/or birthplace? Or how the answer to one unasked question would compound that of the other? I remember reading Sarah Schulman’s Ties That Bind: Familial Homophobia and Its Consequences (2012) some years back when it came out. It started me thinking…on what a continuum of care might actually feel like.