A few weeks ago, while flipping through Instagram, I was surprised to see a photo of my friend referencing his HIV diagnosis. While it wasn’t a secret, I admit that I fell into the typical rhythms of “admiring his courage” and wanting to reach out to him and others to talk about what it’s like to live with the disease. Not wanting to offend, I first brought it up with some friends and family members who all asked me an important question, “Why?”
My response was that by being public with his HIV diagnosis, I felt that he was putting himself in a position where he could use his story to educate others about the daily experience of life with HIV, and Jaja in would be an ideal vehicle for doing that! Again, my friends and family asked me, “Why?”
So I went a bit deeper, saying that I believe there is value in being visible— with everything, but especially around stigmatized issues. Ignorance or incorrect opinions about unfamiliar topics are countered with exposure to the lived experiences of other people. And, hopefully, by sharing space with them, we can find ways to be more visible, in our own ways, to the people in our lives whom would benefit from it.
“So then, talk about that.” My mom said to me. “Stay in your lane.”
The question for me eventually became, Can we use stigmas as a way to explore our relationship with the issues that we feel, for whatever reason, we need to keep secret. And can we use those insights to be more visible to others in our lives?
So, with that in mind I reached out to a family friend, Dr. Duane E. McWaine, MD for some informed guidance. He’s a psychiatrist who has worked in the space of HIV, race, and stigma for 35 years, and had some very clarifying and actionable things to say on the topic.
In this post, we talk about:
Definition and Possible Origins of Stigma
First and foremost, Dr. McWaine says it’s important to always remember that “cultures define stigma.” And that even within cultures, there are differences among sub-cultures that can impact behavior. For example,
“If you’re Jewish in NY it’s almost expected that you’ll have a therapist. And if you’re Black in Mississippi, you shouldn’t even know the word. Those are both parts of Western culture, but the sub-cultures have a very different view.
Or even within the Black community:
“Black folks from NY are a little different than Black folks in California and in the South. There’s this thinking that you don’t put your business in the streets. And that causes folks to stay silent about all sorts of things, from hypertension and taking medication, to the fact that they have prostate cancer, to the fact that they have a sister who’s gay.”
With that in mind, he defined stigma as “a social disapproval or opprobrium that comes with a particular thought, behavior, or quality of a person or a person’s life.” And where do these social disapprovals come from? Well, “there’s probably not a blanket reason for that. We’d probably have to look at each one and figure it out.”
But let’s take two examples: Epilepsy and sexual orientation:
“For a while it was believed that people who had epileptic seizures were possessed. And if you’re possessed—if you have demons—that’s something to be ashamed of. You don’t want people to know that there are demons that take your body over. Hence, having epilepsy became a stigmatized experience.”
“When it comes to sexual orientation. There we look at Western culture compared to other cultures, where sex and nudity aren’t intertwined the way they are in Western society. You know, people walk around naked in certain cultures and it has nothing to do with sex, but in our society what people have in mind is that you’re somehow being sexual. In some cultures that would just be weird. So it has to do with the evolution of the culture, and again what the particular thing is that we’re talking about. So in Western culture, we happen to have a preoccupation with things that are sexual, and so we grab other things and put them into the same bucket: whether it be nudity, sexual orientation, or even gender identity.”
Take these two natural events that were once misunderstood, and you’ll also be tapping into the protective instincts of a society:
“If you go to the base urges of a person and of a society, then one of the things that a person and society wants to do is propagate itself. And if there’s some bad thing that’s happening that you don’t understand, then you keep that bad thing away. So absolutely, that is a sensible view of how societies protect themselves, and the form that can take that begins to look like stigma.”
Making Space to Come Out