`Twas brillig, and the slithy toves
Did gyre and gimble in the wabe:
All mimsy were the borogoves,
And the mome raths outgrabe.
Lewis Carroll, Through the Looking Glass
It being some time now following my sero-conversion, I need to consider not only about my sero-status, but also how I will relate to others. Shall I sero-sort or sero-position? Should I enter into a sero-discordant or a sero-harmonic relationship? Will other MSM understand that my sero-status being undetectable and my high normal CD4 counts lessens the possibility of transmission, and should I be concerned about other blood borne pathogens being a PHA on antiretroviral treatments?
Most people who read the blog postings on this site will understand (or mostly) what that meant. But to the general population – even most people living with HIV, it’s all a bunch of gibberish and gobbledygook.
Jargon. It’s not confined to the AIDS industry, but the industry is rife with it. Jargon is insider language: acronyms and phraseology that are used to talk within a specific trade.
It can be useful, but only to a point. Jargon can inform a discussion between and amongst professionals, but once it seeps into general conversations used with a broader audience it can create a division and a dangerous way in which those same professionals view complex people. We are no longer individuals with kaleidoscopic lives that shift and change from moment to moment; we are now become a set of words and letters that clinically describe our social linkages and behaviours with the emotional bond a scientist might have to a lab rat.
And that makes it easier for health authorities, governments and professionals to distance themselves from any real human connection.
Several years ago, when the term “marginalized” became popular, I heard it used at meetings, but my gut was twisted in knots when I heard a woman involved on the street using it to describe herself. Now, it might be true that she is marginalized (although I believe everyone lives on the page with me – there is no “margin”), but when we use that language to describe ourselves, something shifts in our brains and we become and perpetuate that thing.
When I first heard the term MSM, (men who have sex with men) I didn’t know what it meant and when it was explained to me I was incensed. I am not an “MSM”, I’m a gay man and was a part of the struggle to rip the doors off the closets. MSM is a demeaning term to me and slowly a number of us have been trying to change that to be “gay, bi and other men who have sex with men”. It’s a challenge when you’re faced with professionals and health care providers who get used to terms to describe a diverse group with one easy acronym.
Once I was leaving a needle exchange office and right by the door on the way out was a large red stop sign that read “stigma free zone”. Sounds like a very friendly way to bring people into the circle, but I believe it’s very damaging because it points out to the people there that they are stigmatized. Not that stigma and discrimination don’t exist and aren’t harmful – they do exist and they have clearly wrecked havoc on people. But when we are constantly reminded that we are less than perfect creatures we wear that mantle of imperfection and internalize the message which in turn can contribute to feeling stigmatized, discriminated against and ashamed.
I think we need to change our language, or at the very least be careful how and where we use it.
In the broader population of people living with HIV, we need to create space where terms like “stigma, discrimination, MSM, sero-this and that” aren’t even mentioned, where jargon is banished and we speak in real words that people understand. And we must learn that if we want to change the “system” we have to insist that the system sees the whole of us – not just our blood work and test results or our socio-economic status.
We must insist that we are complete and perfect just as we are and we don’t want terms and phrases that diminish our complex, crazy and beautiful human-ness.