Disclosure and Stigma


The following is a post that I’ve adapted from a comment I left on a Facebook thread about forcing disclosure of people living with herpes, in the acting industry where kissing is a norm.  It was a valuable conversation and I learned a lot about how to articulate my ideas on this issue. 

If we lived in a world without a fear of STIs, disclosure would look very different.

We cannot effectively talk about disclosure about STIs without also considering stigma about STIs, and how to build safer spaces to have that disclosure.

A lot of the general conversation around herpes has been about the rights of people not living with STIs to be “protected” from STIs and, by extension, to be protected from people living with STIs. This further exacerbates stigma towards people *already* living with STIs  by making them be the sole carriers the burden of stigma of living with an STI.

This is therefore not a holistic conversation about health; for example, if we’re talking about fearing the stigma that may come with a blemish for actors not living with herpes, what about actors *already* living with it? Shouldn’t our policies and frameworks to address stigma, and disclosure, and an industry that so prizes a certain type of aesthetic start there or include them in the conversation? Or are we saying that this industry simply deserves to have blemish-free people because it always has had that, and tends to prioritise that, and so people living with herpes should just “make do” in that framework, somehow, even if it invisiblises them, and further stigmatises them?

Instead, I’d ask that we move towards a culture that respects individuals regardless of their STI status, and which promotes safer spaces to disclose. This is not just a question of “should people disclose or not”, it’s a broader discussion around why we consider disclosure to be important. When we talk about risk, what is this “risk” we are talking about? Risk of an illness? Or risk of something that people tend to go “ugh” at (ie: stigma)? Why is being blemish-free prized by this industry, and how does it harm people living with herpes?

For me, empathy recognizes why people choose silence and the social determinants that go into silence around diclosure. And that is very much tied to stigmatizing, violent, and emotionally hurtful backlash.

Suppose other stigmatizing or marginalizing conditions were passed through kissing – like say: a certain size. or how about a certain race. Would we sit here and say, welll you have to disclose that you can pass on these things, because it’ll affect someone else’s job prospects, or would we be trying to instead change a culture to one that actually respects different sizes, different races?

People (should be allowed to) live, and thrive, while being not white.

And people (should be allowed to) live, and thrive, while being not skinny.

Similarly, I ask that we move to building a world that actually respects different people’s health conditions – people (should be allowed to) live, and thrive, with herpes and HIV.

Calling someone else’s STI a weapon that ends where your lips begin, or equating transmission of STIs to sexual assault, or saying that you have a right to their medical information where your lips are concerned is not an empathetic response to people living with STIs. In fact, weaponizing an STI is precisely the kind of fear-mongering-based stigma that people living with STIs live with on a regular basis: that they’re predators going around “infecting” others out of ill will. Furthermore, that analogy of the fist and the nose originally came from a bit on free speech, ie: you get to say what you want so long as you don’t hurt me. But that is my question here: what about living with herpes is hurtful – other than the stigma? What are you at risk of “catching” – other than the stigma? What are you at risk of living with if you get it – other than people looking meanly at you? 

And if it’s just stigma, why is this conversation about forcing disclosure?

And why is this conversation not about challenging stigma in these industries, and in our lives, and in our wider social world? 

Why do you assume that knowing someone else’s health status will make it easier for you to protect yourself, instead of just taking those measures to protect yourself *anyway, regardless of someone else’s health status*?

In fact, there is no legal pressure to disclose for herpes precisely for this reason: it’s not life threatening, it does not reduce quality of life by enough medical standards despite a study or two linking it to the equivalent of the effects of a regular hamburger, and it is a minor nuisance that is exacerbated by social stigma. So no, your right to someone else’s medical information does not begin where your lips begin – not in this current context of our world where disclosure *also comes with its own risks of retaliative hurt*. And your right to someone else’s medical information doesn’t begin with your fear of herpes. Your fear of herpes starts and ends with a culture that stigmatizes it no end.

 

Informed consent doesn’t mean you suddenly have access to people’s private healthcare information; people who are not living with STIs can still choose to make disclosure a safe option without demanding it, forcing it, or assuming that people they meet are STI-free unless they disclose. Indeed “the prevalence in young adults is 20% to 40%. Each year beyond age 29, another 1.5% of patients reportedly contract the infection, up to age 50.[3] By age 70, the prevalence approaches 90%.”  Instead, I encourage people to take responsibility for their sexual health, to ask questions that are compassionate towards people living with herpes or any other STI, without cloaking their desire to know under “informed consent”. No. You want to know because you don’t want cold sores because, like so many things, the world has told you it’s an ugly thing to have. So admit that to yourself first. And work from that place of compassion – to yourself and to others: that someone has a thing that you’ve been taught your entire life is ugly, and something to avoid, and that they should tell you if they’re carrying the ugly to protect you. That’s why you want to know. It has nothing to do with health, and everything to do with image.

Indeed, the single best way to actually make disclosure happen more often,  is to do everything in our power to make it happen *safely* and in a way that respects people living with STIs. If we cannot ensure disclosure happens safely, disclosure likely will not happen, unless it’s forced. And forced disclosure only protects one set of people: those who are not living with an STI. And if it only protects one set of people, it’s not an option that values equity. And if we are not having a discussion about safe disclosure, if we are only talking about how much of a right we have to each other’s medical information, we are having a discussion then about how much we want to protect a status quo that marginalizes those living with STIs while elevating those who do not.

Bluntly put: If we lived in a world that viewed cold sores like a birthmark that you could transmit, disclosure would neither be a question of stigma or fear, but just an element of daily life, precisely because herpes itself would be seen as just a part of daily life. 

So the next time you feel you have a right to know, the next time you feel betrayed that someone didn’t tell you something about their health, think to yourself: How am I reducing this person to their illness? Why do I feel I have a right to know this information about them? What must it be like to live with something that is essentially harmless, but which the world hates, and which I have been taught to hate? What do I find threatening about cold sores, and why? Why do I feel fearful of this condition? What can I do to change this culture of fear – this culture that I’ve bought into?

I understand my opinion isn’t popular, but it was necessary to talk about stigma when it comes to disclosure because without that, people live with that one-sided burden of disclosure. And quite frankly, this is atrociously unfair as we’re *all* responsible for participating in a culture of STI-related stigma so forcing or demanding disclosure when we all perpetuate this stigma is deeply, cuttingly, cruel.

And I want to move to a model where we can talk about disclosure as a shared responsibility, a collective task, a framework that doesn’t judge, and I’d ask that we collectively move towards shaping a world without that stigma, where arguments for disclosure aren’t solely about protecting “the hallowed uninfected”, as it were.

[edit: on Facebook, this post has generated a lot of questions around criminalization, sexual assault, informed consent, stigma, and the impact on/intersections with immune deficiencies. I am in the process of writing follow-up posts that discuss these issues in more detail, so please stay tuned!]

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One Response to Disclosure and Stigma

  1. Pingback: (dis)closure | Kshyama's Attic

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