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Frerichs, R.R. Normalization of HIV.

SEA-AIDS Network, July 26, 1999.

Posted in response to:

SEA-AIDS, July 19, 1999

From Katharine Landfield, Vietnam

Sujaya Misra's posting on human rights and discrimination in Cambodia made me think of one very powerful lesson that I have learned here in Vietnam.

Although stigma, rejection, and discrimination are definitely part of the landscape that make AIDS different from most other diseases, there is another dimension - many families and friends ARE providing loving care to people living with AIDS (PLWAs), but they are doing it "in secret" or without any assistance from "professionals," and certainly without any media attention.

It is incredibly important for us all (especially media) to highlight, draw out, and learn from these otherwise unreported acts of care and love (note, I am saying highlight the acts, not drawing attention to private people who are just going on with their lives). When people constantly hear about doctors, families, and others rejecting people with HIV or AIDS, they don't have any other model for interaction EXCEPT rejection. When, by contrast, they learn that average people like themselves are not afraid, not rejecting, and not forsaking their loved ones, then they begin to see that it is in the range of POSSIBLE reactions to HIV.

I have been told by many medical workers that "all people with HIV are being rejected by their families." However, when I began to meet with patients, I found that many of them were at home, being cared for by their families. It was fascinating to me that despite the family acceptance which some PLWAs were experiencing, the observers/professionals were blind to the reality because they so deeply believed that HIV [leads to] rejection.

Highlighting that some people ARE being accepted, cared for, and loved seems to be a useful tool for addressing the overwhelming stigma and discrimination that many others are facing.

Katharine Landfield

HCMC, Vietnam

SEA-AIDS, July 21, 1999

From Daniel Halperin, University of California, SF

I found Katharine Landfield's posting to be one of the more useful ones I have read for some time, on this or other AIDS discussion groups. Landfield is insightful in pointing out that by constantly harping on the (unfortunately all-too-frequent) instances of rejection and discrimination against PLWHA, inadvertently we only reinforce that "model" of (non) care.

In my fieldwork and consulting work in places such as Brazil, the Dominican Republic, South Africa and California, I am often told by people living with HIV that the most effective "IEC" (information, education, communication) have been materials such as TV broadcasts showing famous people physically touching and otherwise caring for people living with HIV. Such images, as opposed to angry editorializing against human rights discrimination, are experienced as making more of a positive impact on societies' typically erroneous, fear-driven misperceptions of HIV and its victims.

Daniel Halperin

Community Health Systems Dept., UCSF

R.R. Frerichs Posting

The recent posting by Katherine Landfield in Vietnam and the responding posting by Dr. Daniel Halperin raise very important points about normalization of HIV infected persons that all too often are overlooked as nations struggle to address the AIDS epidemic.

There are two major ways to reduce HIV transmission. The first is by mass education to reduce high risk behavior. The second is testing and case-finding and if married or in a long-term relationship, partner notification. Neither approach is easy, with problems and solutions discussed regularly in the popular and research literature.

For the second approach to work (i.e., testing and case-finding), people who are infected with HIV cannot be made fearful of having their status known to others. When this occurs, people avoid testing programs, the epidemic continues, and society in a collective way absorbs the consequences. What needs to accompany widespread testing programs is an active effort to promote normalization of HIV. This means having society view HIV infected persons as having a chronic disease, similar to forms of cancer, diabetes, hypertension and the like. Where HIV and these other diseases differ, of course, is that HIV infected persons harbor a virus that is transmissible while those with other chronic diseases do not. Fortunately, with knowledge and adherence to simple prevention methods, HIV transmission can be easily avoided. Thus the HIV infected person who's status is known so that prevention methods are routinely followed, is no threat to the family or community.

Efforts to promote normalization often involve prominent sports or social figures, who are seen to have close social contact with others, without generating fear. To move in this direction, public health officials need to become involved with the media, first to reduce sensational stories that constantly link HIV with commercial sex workers, drug addicts and homosexuals -- groups that are often marginalized in the eyes of the public. 

Second, they need to get the media to put forward positive stories as suggested by Katherine Landfield, pointing to family members and others who are generous in their behavior towards those who are infected. Most societies hold in high esteem persons who reach down and help others. When HIV is made to look awful and dangerous, such helpers seem foolish. When HIV is normalized, such helpers appear noble.

Further details on testing and normalization can be found in my 1995 article, "HIV Winners and Losers."