Stigma and HIV/AIDS Intervention Structures
David Patient & Neil M. Orr
30 June 2004
INTRODUCTION: FUNCTIONS VERSUS STRUCTURES
To what extent is the method of delivery of HIV and AIDS services contributing to the perpetuation of stigma?
If stigma is a set of ‘isolate and separate’ perceptions and behaviours, then are we not perpetuating stigma by having ‘separate’ structures such as HIV policies, HIV programs, HIV Champions, HIV peer educators, HIV NGO’s, public officials with HIV portfolios, HIV awareness campaigns, HIV condom distribution, ABC, and AIDS day talks. We even have AIDS orphans! Don’t get us wrong: These services are critical to our efforts to deal with HIV and AIDS.
Instead, what we are asking is: To what extent are we confusing the need for these functions, versus these potentially stigma-reinforcing structures? We fail to recognise that we are perpetuating a state of separation by setting HIV/AIDS on its own platform, particularly in delivered interventions. We unintentionally isolate those living with the disease in our desire to help and do the right thing. Is it not time to normalize HIV/AIDS by striving to include these HIV AIDS functions within existing health, policy and service structures?
Let us use VCT sites (i.e., specific testing offices) as an example: Let’s just walk through this process. First, you need to enter the VCT office (or building). Anyone in the vicinity has seen you do so, and will probably speculate to the reasons. You sit in a waiting room with other nervous people, each knowing full well why the other is there. After the counselling and testing process, you receive your HIV status. You then either walk out with a big grin, or in shock or tears, right back into the waiting room, with everyone looking at you, reading your face and back out on the street. When a person walks out of a VCT site crying it is a pretty clear indication of that persons’ HIV status.
STRUCTURAL STIGMATISATION
This issue of structural stigmatisation has emerged from two sectors: The first group is typically non-HIV-infected, who have expressed resentment at the ‘special’ attention given to HIV and AIDS. It appears there is a backlash to the ongoing efforts to deal with HIV and AIDS. Questions raised are: What is the difference between an ‘ordinary’ orphan and an ‘AIDS’ orphan? Don’t they deserve the same care and attention? Why are there no equal efforts for cancer, TB, malaria, high blood pressure, and diabetes? Do they have a point?
The second group is the infected and affected themselves: Often, we hear of people either refusing to enter HIV AIDS structures, simply because this forces them to disclose their condition, by virtue of their presence at such structures. There is no privacy in such situations. The standing conundrum in HIV/AIDS awareness campaigns is: How do we get people to attend? If you attend, you are concerned. Then people wonder why you are concerned. The stigma begins.
MAINSTREAMING HIV/AIDS FUNCTIONS
If there were no solutions, we would have no problem with simply ploughing ahead, doing the best we can, hoping that the benefits of helping those infected and affected outweighs the price they pay, in terms of stigma. However, there are alternatives, which – quite frankly – make more sense, from a logistical, cost, and capacity perspective:
If HIV was mainstreamed - at least in terms of its social marketing and delivery structures - this normalization would in and of itself start to address stigma. Why not incorporate HIV within the broader context of chronic and life threatening illnesses? For example: In the VCT setting, if a person is in a ‘wellness/health’ clinic, where people with all sort of illnesses are being treated, and they are there for their HIV test, then nobody in the waiting room can speculate as they could be there for any number of reasons and tests. At the very least, have a back exit out of the building so that if a person does receive life altering news, like their HIV status, that they can exit without having to walk back into the waiting area, for everyone to see their emotional reaction.
SPECIALIST PERSONNEL VERSUS EXPANDING EXISTING CAPACITY
Are we being effective in maximising capacity by creating specialist counsellors, or do we simply need to increase the number of health personnel, and capacitate them all to counsel and test for HIV? Do we need to create specific HIV AIDS policies, or do we simply need to re-examine existing policies concerning potentially life-limiting illnesses? Can we increase the community coverage of awareness and health-promoting behaviours by expanding the knowledge and skills of peer educators to include other health concerns, and let them deal with a wider range of community issues? Quite bluntly, is it not more effective to remove the term ‘HIV AIDS’ from awareness efforts, and rather include it as one of a range of modules in ‘Wellness’ efforts, where other issues include hepatitis, malaria, TB, breast-feeding, nutrition, and other common concerns? How many more people would we reach this way? We suspect that the ‘footprint’ of such Wellness educators would be much wider.
Why is business not investing in the over-all health of its workforce and their communities? Why is business trying to replicate what already exists and not putting its money into capacitation of what structures already exist? When an employee gets ill, more often than not, they will seek support within their community long before they will step forward and seek help from an employee assistance program, especially if they know or suspect their HIV status. There is a significant portion of employees who would rather die without help and support than be identified as HIV-positive.
WORKING FROM THE KNOWN TO THE UNKNOWN
One of the problems with HIV is the fact that you cannot see it. It is, for many people, an intangible, except as a symbol on a test result. However, AIDS is quite real: We know what it looks like – it looks like TB, cancer, skin conditions, pneumonia, wasting, diarrhoea, and so forth. The reason we know what these look like, is that they have been around for a long time. The only difference now is that we see it more in people who normally did not get these serious illnesses. Therefore, when we focus upon identifying and dealing with such illnesses – and make it clear that HIV may be a key factor in it’s presence and treatment – HIV becomes relevant to those who would normally not be concerned. When we try to deal with HIV as a separate ‘special’ entity, we are working from the unknown (perceptually) to the known (AIDS). However, when we focus upon wellness (and existing structures), we are working from the known (various illnesses and health concerns that affect anyone and are familiar to them) to the unknown (HIV).
COMMUNITY INTERVENTIONS: ‘HIV’ VERSUS ‘WELLNESS’
Our work has taken us all over Africa and when we do an HIV program, few people show up unless they are within the HIV network (HIV industry: ASO’s, NGO’s, CBO’s and FBO’s). Yet when we do community wellness training – which includes HIV and AIDS, but is not the sole focus - we more often than not run out of space for the amount of attendees. When we do the same process where HIV is the stated focus, we struggle to fill the room with members of the broader community.
What have we learned from this? Quite simply, we need to mainstream HIV and AIDS as one of a range of health concerns, at least in its delivery aspects. Yes, we plan and strategise as normal. We know full well that we are plugging an HIV intervention. However, we simply market it differently, as wellness. Is this deceptive? No: Every single component of health – nutrition, immune strengthening, hygiene, intestinal parasites, regular medical check-ups, breast-feeding issues, identifying and preventing common infections - are all of primary concern to those infected. However, they are equally important to the uninfected, and affected. Most people want health and wellness. It is a simple matter of starting where people are, and not where we need them to be.
Our results? On day one or two of a five-day program, we ask who has been tested and who is open to being tested and a handful of people put their hands up. Once we have covered health, food and nutritional security, explained how improving immune function affects over all health and what people can do to ensure effective immune function against all diseases (and how to live with HIV, Cancer, etc) everything changes. When we ask who would be willing to get tested now for HIV, most hands in the room go up. When placed within a wellness context, people see the reasons why they need to get tested. But if we pitched up, did a few hours on ‘know your status’ few if any would come forward for testing.
CONCLUSION
So our approach is to work within wellness, which includes - but is not exclusive to - HIV, a broader context of health and we are getting amazing results. By downplaying HIV and up-scaling overall health and wellness, we achieve more than we ever did making HIV a stand alone process. If we keep doing what we have always done, we’ll keep getting the same results. If we want different results, we have to change what we are doing.
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