DON’T START WITH ME!
-Email from a HIV Charity Support Worker
With a roll of my eyes, I copied the woman’s name and email and slapped them into Google. I instantly saw she worked for a UK-based HIV charity, which I have never heard of so was impressed she took the time to read my book and the trouble to bother me. I spent around an hour more to find out if she lived with HIV and came to the conclusion, she does not.
I clicked the link she had taken the trouble to send although I knew what it was going to open as I’d seen it before. It was the George House Trust HIV Language Guide that they ordained as being appropriate language to use around people with HIV. And to clarify this woman did not work at this particular HIV charity.
One or two of the alternatives being suggested I felt would come to people naturally given society has progressed significantly and/or would be more appropriate. But, still, does society need lecturing on what language to use which over recent years we’ve seen only gets their backs up?
NEW HIV LANGUAGE: By George House Trust
Ok, it makes sense but is it really going to cause offence?
I’d rather have ‘HIV positive person’ as opposed to ‘Person living with HIV’ as it alludes that I and HIV are friends/lodger as opposed to an unwanted squatter.
This gets everybody, even me but what does it matter? It’s not that deep.
After all it’s not:
HIVV - Human Immunodeficiency Virus Virus
Acquire /əˈkwʌɪə/ verb
buy or obtain (an asset or object) for oneself.
Contracted /kənˈtrakt/ verb
catch or develop (a disease or infectious agent)
Need I say anything more?
Most people know the difference and use HIV as a more popular word and one you’ve most likely shared for them to refer to someones status in the first instance.
If someone refers to HIV as AIDS [context] then this is a deliberate act therefore malicious and weaponising someone’s HIV status, not stigma.
I didn’t read any further as I found it all just too ridiculous. And while I am always happy to listen to ‘feedback’ all I did in my book is refer to my HIV as I do in real life, when the situation permits, as “My AIDS”. My career alone has taught me there is always a time and a place. And my personality has always been to put people at ease, and when I’m talking about HIV then let’s kick the elephant out of the room. I find, especially with the Lost Boys of Soho that referring to my HIV as “the AIDS” immediately put them at ease and they knew they could engage on the subject as opposed to tip-toeing around me.
RIVERS: “Life is tough, make a joke”
Therefore, I didn’t need a lecture from someone who thinks she’s Princess Diana, telling me what language I should use when referring to ‘my HIV’. Attending a one-day seminar in a Holiday Inn on the M25 doesn’t qualify you to tell me about how I am to conduct myself while living with HIV for the remainder of ‘my life’. As for HIV charities making guides on HIV language, I ask, why put up barriers to make people more fearful of saying the wrong thing than the virus itself? Why make people fear engaging in conversation around HIV?
- Joan Rivers
This blog post has been sat in my drafts for many weeks while I questioned if I should share it or not. I decided to post it after seeing the drivel on the right today from one of my Instagram followers. He’d been on the “Fighting HIV stigma” march with an estimated 200 people organised by Terrence Higgins Trust and who he has associated himself in the past.
It was clear from this post that he was attempting to muddy the lines further around HIV language. So much so I was confused and stumped, in equal measure. “Replace: - living with HIV and HIV” before going on to state. “With:” followed by an incoherent list of what appeared to be references to protected characteristics under the Equality Act 2010?
I sent it to 14 people living with HIV who stated they had no idea how to interpret this despite having spent some time to perhaps try and decipher what he intended to say.
BAFFLED: Totally ‘woke’ and not' ‘inclusive’
He concludes “Some may call it #Woke - I call it #inclusive.” I’d argue it is far from inclusive if nobody can understand what it is he is trying to say. I would like to think there was a serious and sincere message there but on the whole, it appears to be nothing but #Woke nonsense in a bid to manipulate language around HIV. Society does not have to burden the ‘self-stigma’ of those living with HIV by changing the language around HIV/AIDS. To such a degree that it becomes so confusing and makes them fearful of saying the wrong thing. If it aint broken don’t fix it, and why do some PLWHIV not credit society for the gains made around HIV stigma?
66 million people live in the United Kingdom, and around 106,000 people are living with HIV, that’s 0.2% of the population living with HIV. If language matters then I suggest HIV charities pick ‘fights’ that need “fighting” today as opposed to the ‘fights’ already won.
See my blog post “HIV stigma” is so last century, literally.
THT: Headed a coalition in “Fighting” HIV stigma
Did I reply? No, I was tempted. I considered something short and sweet like “when you, yourself are living with HIV then feel free to come back to me”. She had entered her full name along with her work email on my website ‘contact me’ page. So she was clearly not hiding nor attempting to share her unqualified opinion anonymously, I did take a couple of weeks to mull it over, should I respond to her and/or the director of the charity? Do I share how lecturing someone living with HIV with the language they use when in context, was always in reference to ‘my HIV’ and in an engaging and humorous way as per my personality? Should someone object to my use of language around ‘my HIV’ then the burden is on me at that moment to rectify or clarify my position and the language I use. It is not the burden of a contrived PDF by George House Trust then delivered by this self-righteous, moronic individual.
I shared the email with several other people living with HIV who were all equally annoyed. Some stated there was no consultation on the word ‘Queer’ that was allegedly reclaimed and slapped on the gay community despite it being a slur of historical homophobia. There is no consultation when ‘cis’ and endless pronouns are forced upon us in daily conversations often met with a hissy fit, tantrum, or being labeled ‘phobic’ in a defamatory rant if you don’t play along with the troubled narcissist. This and so much more, ‘forced’ upon its own community [LGBT] that I don’t object to (do whatever you feel makes you happy) and equally I don’t ‘buy into’ so don’t include it in my vocabulary. Yet here I am being told to ‘stop’ using language that relates to HIV/AIDS, a virus I have to live with until the day I die. My death certificate no doubt in the event of a ‘natural’ death will give way to having the cause listed as an ‘AIDS-related illness’ or ‘Advanced HIV’ as they now term it. No doubt confusing society when telling them there is a difference between HIV and AIDS when allegedly “fighting” HIV stigma, yet AIDS is just HIV but ‘advanced’. Confused?
However, the people living with HIV I reached out to spoke, and one phrase that repeatedly came back when sharing the email was, “don’t you ever change” and ‘change’ I won’t!
