"Fear and prejudice over HIV/AIDS means people are reluctant to get tested"

[snackprof]

I found this old article about Japan and their destigmatization efforts.  It's yet another way where Japan's functional, practical approach to maintaining a society embarrasses us (Americans). 

What I quoted in the title is so simple and common-sensical - I don't get why our "get tested" campaign seems to be based on something else besides this principle.  Even before my diagnosis, I found our get tested campaigns frustrating because they didn't answer the obvious questions that would follow.  "Knowing is beautiful"?  Uh, no it's not.  I always thought I wouldn't want to know - since I always have safe-sex anyway, behaving as if it were possible that either of us could infect each other, why would I want the burden of knowing that I have such a fearsome diagnosis instead of letting it eventually take me out in blissful ignorance.  And here I am now, the the unfortunate pointless burden of knowing I'm positive when the infection has yet to affect me physically in any way, and it seems like it's going to stay that way for a long time.  The PSA's are drafted from the POV of wanted to spread transmission - know that you're positive so you won't infect others.  But that completely ignores the personal interest of the individual.  The closest I've seen American PSA's address why somebody might want to personally be interested in knowing that they're positive is because they can take action to ensure they can live longer, but so what?  Live longer as a modern day leper?

The get tested campaigns would be much more effective - and it's the only way they'd make sense - if they were coupled with a destigmatization campaign.  In fact I haven't seen any public attempt to destigmatize an HIV/AIDS diagnosis in my adulthood.  What's the deal?

[Ann]

snak,

I don't know about you, but I don't consider myself to be a leper, modern-day or otherwise. I'm just a person who happens to have a viral illness.

I don't think we're going to make much headway into changing the stigma until we ourselves start accepting our hiv positivity and stop using terms like "leper" to describe who we are. And damn right I want to live as long as I can - life's to be enjoyed and joy can be found in the simplest of things.

But that's just my opinion, I guess. ~sigh~

Ann

[snackprof]

That you yourself can accept your infection is commendable, but I'm talking about the viability of our current prevention campaign.  Our current strategy as parlayed through PSAs can be translated as "identify yourself so that we can avoid you", and that's not going to sway anyone to want to get tested.

[Iggy]

What I quoted in the title is so simple and common-sensical - I don't get why our "get tested" campaign seems to be based on something else besides this principle.

I'm going to suggest that principle is fine and dandy when it comes to theory but amounts to squat when it comes to getting people to do something or to change their behavior.

I agree that fear and prejudice are two bottom line problems with people getting tested, but I think you also miss the old Ignorance is Bliss rationale too.  People don't want to know simply because they are afraid of being discriminated against or facing prejudice - they (particularly in the U.S.) don't want to know because of the possible crinkle it would have in their own perceptions of the future.

You are right about the self interest angle, but wrong (in my opinion) that it is so simple.

[snackprof]

I agree that fear and prejudice are two bottom line problems with people getting tested, but I think you also miss the old Ignorance is Bliss rationale too.  People don't want to know simply because they are afraid of being discriminated against or facing prejudice - they (particularly in the U.S.) don't want to know because of the possible crinkle it would have in their own perceptions of the future.

You are right about the self interest angle, but wrong (in my opinion) that it is so simple.

The Ignorance is Bliss rationale is exactly what I'm talking about, and what's simple is that this should be obvious to those behind the PSA's, and that they're completely naked without acknowledging it.  As it stands, the negatives of knowing outweigh the positives, from a pure self-interest point of view, so whenever anyone sees someone telling them that they should get tested, we can't help but to think "Why?  I feel fine.  Why would I want to know that I have HIV if I'm not sick?".  Until someone answers that question, the entire campaign can't help but to fall flat.

[Iggy]

Sorry Prof, didn't get that from your previous posts.

What are you proposing to do on the issue?

[Ann]

As it stands, the negatives of knowing outweigh the positives, from a pure self-interest point of view,

I really don't understand how you can think that way. Many people feel just fine until they collapse with an OI. I'm grateful I found out my status while I was still relatively healthy.

And even the issue of knowing your status so you can be sure of taking steps to make sure your virus stops with you can be construed as being in "self-interest" - just ask anyone who goes through the guilt of knowing they infected someone else before they knew their status.

Ignorance is NOT bliss; knowledge is power.

Ann

[komnaes]

AIDS is not a disease that you can ignore. It's also not a disease that can kill you instantly without any early signs. With current meds, one can have an IO, be treated and still lives, only with all the damages that have already been caused to one's body and immune system that could have been avoided with proper medical attention. It's not the 80s anymore where folks like us dropped like flies while nothing could be done.

Social stigma and my health I see as two entirely different issues. I can only confront the former as much as I can as an individual, and I know in many situations I have to hide my HIV status. But the least I can do is NOT to let myself internalize those social prejudices and take cure of my physical and mental well being as much as I can.

I have seen people died slowly and painfully because they found out their status too late. And more importantly, their deaths were not inevitable. I am sure some of them would like to live longer even knowing all the social stigmas. It's your life if you want to be "blissfully ignorance" about your HIV status, but why take away other people's choice.

[Iggy]

AIDS is not a disease that you can ignore. It's also not a disease that can kill you instantly without any early signs.

The problem, I believe, lies between those two issues and how most HIV education efforts rely on either point for their strategy.

[snackprof]

AIDS is not a disease that you can ignore. It's also not a disease that can kill you instantly without any early signs. With current meds, one can have an IO, be treated and still lives, only with all the damages that have already been caused to one's body and immune system that could have been avoided with proper medical attention.

Were you aware of that before you were infected?  I had no idea, or at least wasn't fully convinced, that there was some sort of treatment deadline (before death itself, of course) for HIV.  Seems like something of obvious import that ought to be emphasized more. 

As for what should be done, I think that the state, when granting funds for prevention efforts out of interest of controlling the epidemic, should require destigmatization messages to be married to get tested messages as the latter is worthless without the other (and make certain that the importance of early treatment is understood).  I'm sure I'm not the only one who reads the current get tested campaigns as "identify yourselves so that we can avoid you" - or am I wrong about that? 

[komnaes]

Were you aware of that before you were infected?  I had no idea, or at least wasn't fully convinced, that there was some sort of treatment deadline (before death itself, of course) for HIV.  Seems like something of obvious import that ought to be emphasized more. 

As for what should be done, I think that the state, when granting funds for prevention efforts out of interest of controlling the epidemic, should require destigmatization messages to be married to get tested messages as the latter is worthless without the other (and make certain that the importance of early treatment is understood).  I'm sure I'm not the only one who reads the current get tested campaigns as "identify yourselves so that we can avoid you" - or am I wrong about that? 

I am very aware of that as I saw 2 of my close friends plus 1 family member died that way - finding out too late. Other than myself I am also taking care of another HIVer, who found out early more than a decade ago just in time for HAART and is to this day doing fine. So what was your question? That I am not qualified to say that AIDS is not a disease that one can ignore?

I don't dispute the importance of destigmatization, but I don't see why encouraging more to get tested must only be done when AIDS is somewhat more accepted by the society. Cos you know what, THAT will never happen as long as there's no cure. It's a deadly STD. But even with the lesser ones, folks still cannot open it because of social prejudices. When was the last time you heard someone freely admitting of having syphilis? The best that we can hope for is that people get more educated so they know we won't infect them unless they want to fuck with us without condoms.

So if your point is more should be done on destigmatization/education, I am all for it. But if your point is we should all stay in a blissful state of ignorance and not get treated just because other people can deal with us, I think you're spreading some really harmful BS.

[snackprof]

I am very aware of that as I saw 2 of my close friends plus 1 family member died that way - finding out too late. Other than myself I am also taking care of another HIVer, who found out early more than a decade ago just in time for HAART and is to this day doing fine. So what was your question? That I am not qualified to say that AIDS is not a disease that one can ignore?

What?  No!  I was asking to see whether you were familiar with the possibility of permanent yet preventable damage being wrought by an undetected HIV infection because it's public knowledge that I happened to miss for some reason or because you happened to have had experience with that circumstance.  The latter I see - and my point was that that's not a well-known consequence of being ignorant of your status, and that it's something that should be emphasized during "get tested" campaigns. 

And I of course wasn't advocating staying ignorant - I was explaining why someone might want to stay ignorant from the POV of someone who is in a high-risk group and is the audience of the current crop of campaigns urging people to know their status.  I did so to make the point that such campaigns are ineffective, not that the intent behind such campaigns are undesirable. 

[Iggy]

As for what should be done, I think that the state, when granting funds for prevention efforts out of interest of controlling the epidemic, should require destigmatization messages to be married to get tested messages as the latter is worthless without the other (and make certain that the importance of early treatment is understood).  I'm sure I'm not the only one who reads the current get tested campaigns as "identify yourselves so that we can avoid you" - or am I wrong about that? 

That's not proposing to do anything to be honest.  I think the state should have free medical care for all and that there should be gay marriage rights and a whole slew of other items.  The question though is what are YOU proposing to do about this?

[snackprof]

I don't think I'm required to have drafted a comprehensive action plan before even daring to discuss a problem.  Is this something you demand from every conversation?

[komnaes]

I don't think I'm required to have drafted a comprehensive action plan before even daring to discuss a problem.  Is this something you demand from every conversation?

No, but giving it a bit more thought before criticizing a campaign that is helping a lot of people to get the medical attention they need to stay alive is probably a good idea. I still don't get your point - so maybe you can enlighten me by answering these:

(1) a person in a high-risk group should be told that s/he should not be tested if s/he is not ready to deal with the social stigma, right?

(2) and if that person is not ready because society still cannot accept HIVers, and if there's no visible sign of any health issues, s/he should just wait for a OI to pop up and THEN deal with it?

And yes, as far as I know, there are permanent but preventable damages. The first sign of one of the cases I know of was dementia. When he was taken to the hospital he didn't tell anyone that he was in a high risk group and no one for the first 3 months of his admission in the hospital thought of giving him a HIV test. When they finally found out he was already suffering from TB and died. He could have been given HAART as it was just made available.

The choice is simple to me - for me, I knew I was stupidly fucking around without protection, and when I felt I was having a bad flu I immediately got tested. Yes, I wouldn't have to deal with a lot of emotional issues (brought on also by social prejudices) if I didn't know as I felt mostly fine now and still not on meds, but still I would prefer to know and have my conditions monitored so I can get treated when the time comes, i.e. when my CD4 drops to a certain point, not at the time my mind begins to fade or get taken down by a serious OI.

So what's your point then? Is it since the society is still hostile to us, people should at all cost stay ignorance until such a point when they just about to have OIs?

[Iggy]

I don't think I'm required to have drafted a comprehensive action plan before even daring to discuss a problem.  Is this something you demand from every conversation?

You are not required to do a thing (and I wasn't demanding,) but I think that's a funny vibe to put out for someone who initiates a thread in the Activism forum.

I agree with discussing an issue with others is a first step in order to affect change, but to be frank you don't appear to be very welcoming, and in truth I think you are being somewhat dismissive, of most everyone's points and posts raised here.

Maybe it is a language issue, and maybe I am reading it wrong, but just letting you know how you are coming across to me, and hoping that perhaps you can clarify what you are looking for from others in this discussion.

[hartiepie]

Snak's questions and assertion that the state (or whoever is coordinating campaigns) need to understand the intended audience made sense to me.

I am familiar with studies that show people tend to read postings and other writings in their own "voice" since there isn't anything to clue them into the writer's physical expressions. Angry readers assume angry writers, generous readers assume generous writers, etc. Emoticons try to address this problem by providing some sort of visual to accompany text.

Knowing that, campaign designers should be aware that readers have a tendency to read what they want to read. With HIV/AIDS stuff, it is very easy to say "That doesn't apply to me" when it really does.

[Ann]

Knowing that, campaign designers should be aware that readers have a tendency to read what they want to read. With HIV/AIDS stuff, it is very easy to say "That doesn't apply to me" when it really does.

That's why I always thought the message should be along the lines of:

"Have you EVER had anal or vaginal intercourse without using condoms? If you have, then YOU NEED TO TEST FOR HIV."

That pretty much covers it.

Ann