On the disciplin of Caring Too Much

I’ve started, albeit slowly, to conceptualize my dissertation topic. In a recent meeting with my supervisor he told me, “You have two problems. You care and you care too much.” (I think he likes to pretend to be an academic drill sergeant.) He went on to rant about academic discipline….. blah blah blah…. I smiled sweetly and didn’t say what I wanted to say – that I can fake academic discipline if he wants and write a very objective dry dissertation but he won’t snuff the caring out of me. That I’m not afraid of “being too soft heart” when I’m doing field research with people living with HIV/AIDS, because I’ve already seen people both live with and die from it. I wanted to tell him how I decided on this topic, but I applied academic discipline and kept it to myself. Instead I’ll write about it here.

Firstly, this is my topic: Discuss how AIDS treatment policy in South Africa influences the distribution of the burden of care. (How very dry sounding… blah!)

Secondly, here is the story that led to it…… about four years ago, when I was first working at Emmanuel Center a young women, about 17 years old, showed up at the center. She said she had come to inquire if we had space for her brother. Her parents had just died of AIDS, and while she and her older brother were able to fend for themselves, they did not have enough to care for their youngest brother, Tim, who was just seven. I explained sadly Emmanuel Center was full and there was no room for another child. She broke down in tears and said she had walk over 12 hours to come ask us and she couldn’t face going back to the slum where she lived. I offered her lunch, and suggested she call back in a month in case we had space then. I felt horribly guilty for sending her back without more help.
Luckily, she was determined for Tim to get an education and continued to pester Emmanuel Center until we made space for him. When we took the boy for the routine health test we were not surprised to learn he was HIV positive.
This past summer I was back at Emmanuel Center when Tim’s sister showed up once more at the gates, this time to visit Tim for the afternoon. As I sat and watched her ask him about school I suddenly became angry that they were separated from each other (we had tried to arrange for Tim to live with her and Emmanuel Center just support his school fees, but since she was struggling to support herself she was moving every month or so, and so unable to provide him the security he needed).
Having worked with people with HIV/AIDS in Canada I knew that many people with HIV/AIDS were now able to live for decades with the virus because had access to anti-retroviral drugs and healthcare. I thought about how Tim’s parents had never even had access to medications, clean water or nutritious food. I thought – if they lived in Canada they would still be alive and caring for Tim, but because they were poor Kenyans Tim is an orphan. I thought about how in the Western world HIV positive mothers do not pass on the virus to their babies because they have the right medications and information. I looked at Tim and thought about how much longer and happier his life could be.

Tim is an example of what Paul Farmer terms, “inequality in risk, access and outcomes.” He was at risk of getting HIV because his mother was poor and had to breast feed, his parents did not have access to medications because they live in Africa, and the outcome (Tim being an orphan and HIV positive) is shaped by such inequalities. The injustice of this reality wiggled into my consciousness and never left.

So when, seven months later, my dissertation supervisor asked what I wanted to do I said – “I want to figure out how to get everyone living with HIV/AIDS in Africa effective treatment and care.” In other words I want to find a way to prevent children like Tim contracting AIDS from their mothers, and enable those mothers to live long enough to raise their children themselves. Of course there are many brilliant people (including my supervisor) working on this very conundrum, and the topic in it’s self is much too massive for an MA dissertation. So we began to discuss how to narrow it down. Since most policies now support the idea of universal access to AIDS treatment and care, I wanted to know why they were ineffective – why were most people living with AIDS in Africa still not on anti-retroviral treatment and getting the care they needed?

I have a photo of some of the children from Emmanuel Center in my dissertation note book. I keep it there for motivation – I can write with all the academic discipline I need to, but in my heart I don’t want to forget what inspires me – children like Tim and determined women like his sister.