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
Making space to come out
Consequences and dangers of staying silent
Why it matters
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
I am a black, gay, male in America and frankly, have had no real issues in terms of occupying any of those identities. I come from a supportive family and supportive community and I feel like I can bring all of myself into my spaces and feel supported and welcomed. This is a privilege, and it’s obviously not the case for many people.
“The ability to “come out,” come out about being gay, being HIV positive, having epilepsy, whatever—the ability to come out is, in many cases, a luxury. And those of us who enjoy that luxury, really need to bear that in mind. And I think, those of us who can “afford” to be out, have an obligation to at least consider what our coming out versus not coming out does for others in society.”
But not everyone has that luxury to come out into a safe and welcoming environment. Some people should think about protecting themselves emotionally before having risky conversations. If you’re thinking about coming out about something, and you feel like you’re at risk of being hurt, make sure you have your support system ready. Your family of choice can be your place of acceptance, so you’re not left hanging in case you face rejection.
That said, when it comes to changing minds, proximity matters:
“So, let’s talk about HIV. HIV was absolutely anathema to any proper person, or any proper conversations, polite society conversation. If you had HIV you were gay, you were promiscuous, all that stuff and you were gonna die.
So what began to change that? A lot of things happened that began to change that. And among the things that helped change that were two very important, I think essential, things; One, people who were known to greater society came out; and two, respected people— what we now call advocates— advocated.
The fact that [famous people] were out and known, made a tremendous difference in people’s willingness to at least say the word. And that had a tremendous impact, on then, the ability for researchers to get money to figure out what the hell was going on, and to begin to prevent and then ultimately, we hope, fully prevent and cure this illness.
It went from a death sentence within months, to what is now a manageable illness. And along with that, the amount of stigma within HIV has changed. It’s not absent, but it has certainly changed. People walk around freely talking about being HIV positive. Even on dating sites people talk about their HIV status, that’s huge. And that’s because there were everyday people who began to come out and to make real for other everyday people— that they did know somebody who was HIV positive, and that their lives didn’t end because this person was proximate to them.”
Like proximity, context matters. How can we create safe and welcoming spaces for people to feel comfortable being their whole selves? How can we also make these spaces safe for people who have misunderstandings about things? How can we use these conversations as opportunities to educate and de-stigmatize?
“One of the best ways to be a safe space, is to not be an unsafe space. By that I mean, being aware of how, what can be an off handed comment, can have an impact on someone who’s struggling. Like when people say someone just “needs to get over it.” Well, that may not be the thing that person needs to hear, because that person may have just been thinking about the fact that there’s nobody to talk to about this experience they’re having, because everyone tells them that they should just get over it. It’s that kind of thing that caring people can do that makes it safer for others to talk about, or be who they need to be.
And by the same token, it makes it safe for people who have jaundiced view of things to express them so that then you get to have a conversation and address those misconceptions or biases that they may not have felt comfortable addressing otherwise.
So I think that it’s possible for those of us who enjoy the luxury to make it easier, or to pave a way or set some guideposts or light posts for people who are not quite where we might want them to be, based on how we conduct ourselves.”
And a little tidbit for those who feel like they don’t have to come out, or feel they have nothing to come out about. For example, gay people who say, “Straight people don’t have to come out, so why should I have to? or, “Having diabetes is not something to come out about…” or, “Yea, my situation sucks, but it’s not as bad as theirs so…”
“It strikes me as a cop out. I’d say, “You’re right. You don’t have to come out as gay. You don’t have to do anything at all. So what are the consequences of coming out versus not coming out? How do you look at it, and feel about it yourself? Where are the areas in your life where it will make a difference coming out versus not coming out? What conversations are you willing to sit through when people might be making denigrating comments about something that you are? At what point is enough, enough?”
And saying people who have diabetes don’t have to come out…well, I actually encourage people with diabetes to come out. Because, there again, you save lives. Talking about how you developed type two diabetes may make it easier for that person two seats down to talk about how she’s been struggling with her weight and worried about how she’s going to get diabetes. These are things that people ought to be able to talk about because lives will be better, and lives will be saved. So whether it’s gender identity, diabetes, hypertension, HIV, left handed-ness—it all helps.
The Consequences and Dangers of Staying Silent
Just as there are risks to being visible, there are risks to remaining silent:
“Those generally have to do with self-esteem. If the reason for not coming out has something to do with shame, then not coming out makes that shame even more real, and that can cause people to have the illness of depression, anxiety disorders and that increases the likelihood that they’ll die sooner—whether that’s by suicide or hypertension or any number of other things that come with a poor sense of self and increased levels of cortisol, anxiety, and inflammation. Those are some of the physiological downsides.
I believe there are quality of life downsides as well. One misses out on the opportunity for interaction, support, and fellowship by not bringing their entire selves to their experiences. And that’s a loss.
Life can be really, really, really cool. Life can be really wonderful. And for me, one of the most wonderful parts of life have to do with working closely with others around something that’s shared. Relating closely, and with the feeling that there aren’t barriers. All of those things are less likely if there’s a part of one’s self that is not shared.”
Why This All Matters
At the end of the day, this is why it matters to Dr. McWaine, to me, and maybe to you, too:
“I believe that as a human being, one of my responsibilities is to make life better for people. Whether it’s affirmative things that I can do like say things that convey my openness to hear from people and talk to people, to being out myself and to doing the professional work I do. I believe I have an obligation to leave things better than when I found them. I take that seriously for myself. I can’t put that on other people, but I certainly encourage it.”
By the way, visibility shouldn’t be limited to stigmatized issues. For instance, in starting this writing project, I’ve exposed parts of myself that before I had the luxury of keeping private. And let me tell you, it is a uniquely disorienting experience: Exhilarating, liberating, and isolating all at the same time. And even though nobody can relate exactly with everything I’m experiencing, in exactly the way that I’m experiencing it, being in dialogue with trusted family and friends soothes the struggle and strengthens our bond. In fact, if there’s something I know for sure (and there’s not much), it’s that things get better when we talk.
Seattle, Washington, USA
I invite you to leave a comment below with your thoughts about this piece, or any other.