What The Hell? A Call To Action
We have to take action to stop the social marginalization of anyone living with HIV. Now.
Earlier this week, I met a woman in clinic for an initial visit. The clinic nurses told me she was "ready to go" the minute she had been shown to her exam room. I walked into the exam room, and the energy there was overwhelmingly tense. I introduced myself and, in an attempt to get this woman to relax, began visiting with her about where she lived. Slowly, she began to let her guard down, and I thought we were making progress. Suddenly, she burst into tears and began shaking. "I hate change, I almost left, I'm so scared to be here. Nobody can ever know that I'm here." I stopped, reassured her about my absolute commitment to patient confidentiality, and she slowly began to calm down again.
After a few minutes, she told me that she had lost two professional jobs due to other people with healthcare jobs disclosing her HIV status. To help protect her privacy, she had travelled from another small town to be seen in the clinic where I was serving that day. She was terrified that her husband would lose his business in the small town where they lived if her HIV status were disclosed again. She used a pharmacy in another town as another measure to conceal her diagnosis. This woman told me something that I already knew - "people in small towns talk. There's no privacy at the Doctor's office." Even worse, "there's nothing I can do about it. If I take them to court, it's all over the papers. I just have to swallow my anger and do the best I can." When our visit was done, there was another patient in the waiting room, and this woman refused to leave via that route and literally ran out a side door of the clinic.
How I wish I could reassure my readers that this was an isolated incident. Sadly, I cannot even begin to count the number of times I've sat with patients, overwhelmed and exhausted by the hyper-vigilance that protecting one's HIV diagnosis requires here in the Southern US. During the 10+ years I spent at the Vanderbilt Comprehensive Care Clinic, I had a small but regular group of patients that would drive from Memphis or Knoxville just to protect their privacy. Can you imagine driving 6 hours in one day to see your doctor? Just to make sure that nobody knows you have HIV?
My work is rooted in the principles of Liberation Theology and Zen Buddhism. While I should be clear that I am in no way comparing myself to Dr. Paul Farmer, I'm very aware that he also found strength and clarity in Liberation Theology. In his book, "Pathologies of Power", Dr. Farmer wrote about his experiences treating people living with HIV in Haiti, noting that the Haitians use the word "stupid" to describe things that are clearly wrong, unjust, and immoral. As I write this, I can't get the word "stupid" out of my head, so I'm going to use it here.
The unnecessary, mean-spirited, marginalizing, and ugly experiences that many people living with HIV must endure in their daily lives here in the Southern US is stupid. Just plain stupid. We don't need fancy academic language or statistics to call this blight what it is - is it just plain stupid. Anyone working in any capacity in any healthcare or healthcare-related setting who reveals any patient's HIV status without that person's explicit written permission should be fired on the spot. End of story. While this will not solve the larger problem of social marginalization of people living with HIV, it would have the immediate and powerful effect of reassuring people living with HIV that their agency and dignity matter, and that violations of those freedoms have consequences.
This sentiment is an expression of one of my guiding principles. If I could write a prescription to end stupidity, I would happily do so, as would many others. Sadly, that's not the way things work. However, the fact that I can't do the grand thing is never an acceptable excuse to do nothing. I know, from years of clinical experience, that identifying people who are overwhelmed by HIV stigma, anti-blackness, poverty, and other structural ills and empowering them to better withstand these daily onslaughts works. I have seen it work, over and over, and I will be sharing the details of my work in upcoming posts.
We must all engage with everyone around us if we truly want a more equitable, loving, and just society. But that's not enough. We have to remember that people are stupidly suffering and stupidly dying now, today, while we work toward the distant goal of a better society. Empowering these suffering, marginalized people right now is my purpose, and I hope you'll return soon for my next post as I continue to explore this theme and offer proven solutions. We can do better. We must do better. Lives depend on it.
