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|It is not as simple as ABC|
A critique of the rights-based approach to HIV and AIDS
Presentation to the Dialogue on Stigma and HIV/AIDS in Africa
23-27 June 2003 at University of Sussex, Brighton UK
By David Lush
Designed to balance public health needs and the rights of people living with HIV and AIDS, the rights based approach to HIV and AIDS has gained currency within the United Nations (UN) system, and among member states during the past decade. However, if the case of Namibia is anything to go by, it would appear that the rights based approach is not filtering down to a community level, where stigma and discrimination around those living with HIV is still entrenched. This is particularly so within families, as well as the health care system. This presentation looks at why the rights based approach appears to be having little impact at a community level in Namibia. It goes on to propose that participatory advocacy and communication initiatives – those that involve those directly affected by HIV and AIDS, and to embody African values and beliefs - are needed for a rights based approach to take root where stigma and discrimination are most potent.
“We as a community (Africans) are prepared to accept that nature will have its enigmas which are beyond our powers to solve.” Steve Biko (1971 : 44)
It is difficult to argue with a human rights based approach to anything. Human rights are universal and enshrined in international law, and therefore only despots take issue with them. This notion may perpetuate the moralistic discourse that has surrounded HIV and AIDS, as it determines rights and wrongs in an arena in which nothing is clear cut.
As I have seen the rights based approach to HIV and AIDS unfold in policies and programmes in Namibia and elsewhere in southern Africa, I have had an increasingly uneasy feeling that, in practice, the rights based approach is not having an impact where perhaps it is needed most. The more I have sat in HIV support groups and listened to the stories of other HIV+ people, the more I have realised how far apart the reality of living with HIV is from the discourse of the rights-based approach.
On the other hand, instinct also told me that I should be extremely grateful to those who advocated for a rights based approach early in the epidemic, as without them I and the 40 million other people in the world who are HIV+ probably would have been locked up in quarantine centres, or had plus-signs branded on our foreheads long ago.
However, it is because that battle against extreme oppression through national policies and laws has, by and large, been won that we have the space to critique the rights based approach in the context of HIV and AIDS today, and in particular with regards the nature of stigma and discrimination that surrounds the epidemic in Namibia – and by example, the rest of southern Africa, if not the continent as a whole.
Defining the rights-based approach
I need to qualify anything I say from this point forward with a disclaimer: I am not an expert in human rights issues, and I am certainly not a lawyer, so my interpretation of the rights based approach to HIV and AIDS, and the human rights culture in which it is rooted, may be naïve and, in places, even misinformed. Before preparing this presentation, I could not say for sure what the rights-based approach to HIV and AIDS is. And very few people other than experts in the field (and I am lucky enough to know one) seemed to know either. So therein lies my first criticism: very little attempt seems to have been made to popularise the rights based approach which, like the clinical-medical response it seeks to succeed, is shrouded in mystery and jargon that is conceived by small groups of specialists in far away places.
Although the right to the highest attainable standard of health (the “right to health”) first emerged in the World Health Organisation’s (WHO) constitution in 1946, and was enshrined in the Universal Declaration of Human Rights (UDHR) two years later, it has only been in the last decade that health and human rights have been linked in any explicit manner (Mann et al 1994, Gruskin S and Tarantola D 2000: 1). And it was the HIV/AIDS epidemic that acted as a catalyst in bringing together these two domains previously segregated by professional divisions and Cold War politics (Gruskin S and Tarantola D 2000: 1).
In the late 1980’s, the WHO embodied a call for human rights and for compassion and solidarity with people living with HIV and AIDS in its global response to the disease (Ibid). For perhaps the first time, a public health strategy had been framed in human rights terms, and was thereby anchored in international law, making government and inter-governmental organisations publicly accountable to their actions towards HIV+ people, and ultimately responsible for issues relating to the health and well being of their people in general (Ibid).
Leading advocates of this rights-based approach were Jonathan Mann and his colleagues at the WHO’s Global Programme on AIDS (GPA). They believed that HIV and AIDS was not solely a clinical and medical problem, but required a much broader perspective; one that took into account the relationship between the disease, the provision of health care, and human rights (Barnett and Whiteside 2002: 72-3). In so doing, their rights based approach recognised that coercive and repressive measures for trying to control the spread of HIV were ineffectual and counter-productive (Jackson 2002: 345).
The intention of linking health and human rights was to “contribute to advancing human well-being beyond what could be achieved through an isolated health or human rights-based approach” (Mann et al 1994). In the context of HIV/AIDS, this approach sought “to maximise the realisation of public health goals, while simultaneously protecting and promoting human rights” (Ibid). Applying this to health in general, Mann and his colleagues devised a three-part framework that:
Illustrating the last point, Mann et al (Ibid) pointed out that women’s vulnerability to HIV was integrally connected to sexual discrimination and unequal rights. Therefore, legal and societal changes that protected women’s rights would strengthen their ability to negotiate safer sex, and thereby improve their health, as they would be less vulnerable to contracting HIV (Ibid).
UNAIDS took up the cause when the agency was formed in 1996, incorporating social and economic aspects of the epidemic into its work (Barnett and Whiteside: 2002: 73). This no doubt contributed further to the realisation that “the ways that we think of our bodies and what they can do, the ways that bodies behave and, above all, the ways that they desire each other, are products of history, culture, society and economy” (Ibid: 72). As Gruskin and Tarantola (2000: 21) put it: “Looking at health through a human rights lens means recognising not only the technical and operational aspects of health interventions, but also the civil, political, economic, social and cultural factors that surround them.”
The rights based approach today
Today the right to health “extends to all things which promote health and well-being and prevent illness and disease, not just access to medical care” – including the right to education, food and shelter, freedom from discrimination and persecution, information, and the benefits of science (PFHR 2003). The rights based approach to HIV and AIDS in particular, and to health in general, now guides thinking at the highest level of the UN. Noting that the HIV/AIDS epidemic needs to be addressed “through a broad range of efforts, including human rights strategies”, UN Secretary-General Kofi Anan said that “human rights provide a legal and ethical framework for addressing the social and
development impact of HIV and AIDS, as well as introducing accountability under international law for the actions or inactions of duty-bearers” (Anan 2003). Meanwhile, WHO Director-General Gro Harlem Brundtland described the “human rights discourse” as “an inspirational framework as well as a useful guide for analysis and action” (WHO 2002: 5)
Resolutions taken at the recent session of the UN Commission on Human Rights gives an indication of the extent to which the rights-based approach has taken root, at least within the UN system. The session saw the tabling of the first ever report by a Special Rapporteur on the Right to Health, Paul Hunt. Hunt’s approach during his three-year mandate will be to look at the right to health within the context of health and poverty, as well as discrimination and stigma (Hunt 2003: 2). And he had this to say with regards HIV/AIDS:
“Stigma associated with HIV/AIDS builds upon and reinforces prejudices related to gender, poverty, sexuality, race and other factors. Fears related to illness and death; the association of HIV with sex workers, men having sex with men and injecting drug use; and beliefs that attribute moral fault to people living with HIV/AIDS all contribute to the impact of stigma and often give rise to intolerance and discrimination. Stigma and discrimination against people living with HIV/AIDS affects the spread and impact of the disease in several crucial ways. For example, fear of being identified with HIV/AIDS stops people from seeking voluntary counselling and testing, which is vital to prevention, care and treatment efforts. The Declaration of Commitment on HIV/AIDS calls on States to take measures to eliminate all forms of discrimination against people living with HIV/AIDS and members of vulnerable groups, and commits States to developing strategies to combat stigma and social exclusion connected with the epidemic.” (Ibid: 17)
This year’s session of the Commission passed a specific resolution on HIV and AIDS requesting and urging member states to take a wide range of measures underpinning the rights based response to HIV and AIDS. Resolutions on the right to health, as well as the right free expression, also addressed HIV/AIDS.
But such resolutions are not binding, and appear – to an outsider at least – to carry little weight with the states they are directed at. Just eight member states – only one, Tunisia, from Africa – responded to Anan’s request for information on measures taken to implement a resolution taken by the Commission in 2001 that recognised the need for “intensified efforts to ensure universal respect for and observance of human rights and fundamental freedoms for all so as to reduce vulnerability to HIV and AIDS and to prevent HIV/AIDS-related discrimination and stigmatization” (Anan 2003: 4). Meanwhile, the UN’s International Guidelines on HIV/AIDS and Human Rights are just that – guidelines on the integration of human rights into the HIV/AIDS response.
Rights based approach – the Catch 22
The UN system and international law that underpins the rights based approach focuses on individuals in terms of the enjoyment of rights, and on governments in terms of compliance with and promotion of these rights. Human rights principally involve a relationship between the state and the individual, although increasingly they also apply to other institutions and systems, such as multi-national businesses (Mann et al: 1994). But, by and large, States are not the main problem when it comes to upholding the rights of people living with HIV. Rather, the stigma and discrimination that undermine these rights are strongest at a community and family level. This is a domain over which national governments have little control, certainly when it comes to determining the history, culture, society and – in developing countries where HIV and AIDS are so prevalent – the economy; elements which, according to Barnett and Whiteside (2002: 72), have such a strong bearing on the behaviour that influences the spread of HIV.
Herein lies the Catch 22 of the rights based approach as far as the way it is currently conceived and implemented is concerned. By recognising, quite rightly I believe, that HIV and AIDS cannot be dealt with simply through a clinical-medical response, and that coercion is not an effective way of getting people to change behaviour that causes the spread of HIV, the UN neutralises its own authority. It is preaching to the converted – or at least the compliant. The place where a rights based approach is needed most is within the communities and families on the frontline of the HIV/AIDS epidemic. But these are areas over which the UN system and its inevitable global, top-down mechanisms have little or no influence. In short, the UN is the wrong body to be driving the rights based response to HIV and AIDS if we are to address the most potent forms of stigma and discrimination against those living with HIV and AIDS that exist today.
The rights based approach in Namibia
Namibia has one of the highest HIV-prevalence rates in the world, but is generally recognised having a progressive policy and legislative framework that conforms to the rights based approach to HIV and AIDS. By interpretation, the constitution outlaws discrimination against HIV-positive people, as does labour legislation that prohibits, for example, mandatory HIV testing of employees. While this does not apply to recruits to the security forces, the latter cannot be turned away or, once recruited, demobbed simply because they are HIV+. Meanwhile, the Namibian government has gone further than many of its African counterparts in providing services for HIV+ people. The government is in the process of providing anti-retroviral drugs at state hospitals, and this month announced that it was assisting with the establishment of a pharmaceutical factory that will manufacture anti-retroviral drugs locally. Meanwhile, HIV+ people with a CD count below 200 qualify for the government’s disability allowance.
A lot more could still be done, as the findings of the research outlined below show. But on the whole, the Namibian government has demonstrated a great deal of commitment and goodwill towards protecting and promoting the rights of those of us living with HIV. At the same time it appears to conform, in principle at least, to the rights based approach outlined by Mann et al (1994).
Yet research recently conducted by Lironga Eparu, the network of people living with HIV in Namibia, showed that stigma and discrimination remain rife in Namibia, and that we are a long way from enjoying the rights that the rights based approach is supposed to uphold and guarantee. The research (Lush, Samaria, Petrus and Elago 2003) was based on focus groups discussions with around 200 HIV support group members countrywide. Participants were well aware of their rights, in particular the rights to employment, health, education, reproduction, free expression and access to information, own property, religion, and to receive support from the State. They were also clear about the responsibilities that went with these rights; responsibility to remain healthy, not infect others, provide each other with mutual support, look after their children and other family members, and to provide their families with basic needs.
Fulfilling your responsibilities and playing a role in society lies at the core of any human being’s self esteem and well being, and the research’s respondents were no exception. But socio-economic circumstances prevented most participants from fulfilling their responsibilities, much to their distress, as the following excerpts from focus group discussions illustrate:
“One of our group members died because there is no food. There is no work so it’s difficult to feed ourselves.”
“We have the will power but because of the lack of funds we cannot do what we would like with regards positive living – this reduces our will power.”
“We need income generating projects so that HIV+ can support themselves. We don’t want to beg. But when we go for a loan, we are told – ‘You are HIV+, you are going to die’.”
“It’s a problem of staying healthy because we don’t have resources and money to buy food. I have to maintain my wife and child, I have to pay for school fees. So there is no money left for treatment.”
Meanwhile, the research showed the extent to which families and the health care system – places where as an HIV+ person you look most for support and care - were epicentres for stigma and discrimination – real and perceived - that further eroded the respondents’ self-esteem:
“If people stop discriminating against us then we will have the will power to fight AIDS.”
“I disclosed to my family because I wanted to be free so that they know about my situation. But this just brought me problems because they just chased me out of the house.”
“My baby was sick, but at the hospital they simply said: ‘What do you expect us to do?’ My baby died in my hands while I was at the hospital.”
Such extremes of discrimination and stigma contradict the rights based approach to HIV and AIDS, and illustrate the ineffectiveness of positive, rights based measures being put in place by the government.
Participants in the Lironga Eparu research attached great importance to their families. As a result, families have a huge influence on the well being of HIV+ people, and thus our attainment of our right to health. Therefore, families must be a crucial component in the HIV/AIDS response. Many of the focus groups considered family members to be their preferred caregivers, as well as a major source of love and support. In return, participants had a strong sense of responsibility towards providing for their families. Some saw the health of their family members having a direct impact on their own health, thereby suggesting that the health of HIV+ people cannot be dealt with in isolation from the health of their families.
Arguably, governments could do more to address stigma and discrimination within the health care system by way of stricter enforcement of policies and professional codes of practice. But at the end of the day, medical personnel are family and community members too, and hold the same fears and prejudices as other family and community members. Following the logic of the rights based approach, coercion is unlikely to rid health care workers of these discriminatory attitudes, but simply repress them.
At the national and international level, the rights based approach cannot hope to deal with the conflicts and contradictions that arise from its application at a family and community level: for example, conflicts between the right of an HIV+ people to privacy, and the right of their partners to be informed; the contradiction between veil of secrecy that still surrounds the disease, and the need for, and importance of HIV+ people being open about our status.
The dilemmas that come with the rights based approach are perhaps most pronounced around the issue of reproductive rights. It is generally assumed that HIV+ people should not have children once they have been diagnosed, as the conventional means of conception would expose uninfected partners as well as their babies to the risk of contracting HIV. But little consideration is given to the urge and desire of HIV+ people – men and women – still to have children; a desire that is difficult to suppress, as this young HIV+ Namibian woman explains:
“My desire to have a baby is a burning fire. And it will remain so. I have thought about adopting children, but I have always asked myself: ‘What is wrong with me that I cannot have my own child?’” (‘Waundjua’ 2003: 20 – see also Anon 2003: 22).
As a result, many HIV+ people continue to conceive and have children, thereby running risks of transmitting the virus to others, as well as compromising their own health further. Faced with this dilemma, Waundjua (Ibid: 22) felt women should be provided with information and options that allow them to have children at the minimum risk possible. “We can decide for ourselves what is best regarding our rights and responsibilities concerning reproductive health” (Ibid).
Rights based approach and HIV/AIDS communication
Waundjua’s affirmation of the right of HIV+ women to have control over their reproductive rights seemed to focus more on their ability to receive and use information to make informed decisions, than on the drafting and implementation of policies and laws. Lush and Gunter (2000) argued that HIV/AIDS media and communication strategies in Namibia have failed to provide HIV+ people, and the population as a whole with the kind of information needed to make such informed choices. This was largely because HIV/AIDS communication in Namibia had reflected what Seidel (1993: 176) termed a “medical discourse”. This takes the kind of medical and moralistic approach to the disease that the rights based approach sought to replace at a political and legal level. More recently, an “ethical discourse” (Ibid 182) has emerged. Based on the public health mandate of governments, this aims at “promoting the greatest good to the greatest number” (Ibid). This has reflected the Namibian government’s shift to a rights based approach, but nonetheless contains a tension between the public health needs of the majority, and the rights of the HIV+ minority (Lush and Gunter 2000: 5).
However, even the ethical discourse lacks the voices of those living with HIV, and therefore remains narrow and unrepresentative of the lived reality of HIV and AIDS. This only begins to emerge through what Seidel terms an “activist discourse” (Seidel 1993: 183). The activist discourse seeks to empower and give voice to those living with HIV. Such a discourse is captured through “alternative AIDS media” (Juhasz 1995), which in essence required “the positioning of producer, subject and audience … in a similar place” (Ibid: 7). This occurs as a result of the producers having personal experience and understanding of what is being communicated. Alternative AIDS media is participatory by nature, and gives authority to the voices of communities affected by AIDS (Ibid: 7-9)
Inspired by this notion, I compared the production and reception of media by two groups of HIV+ people and two groups of professional journalists (Lush and Gunter 2000). I found that involvement in the production of media seemed to have an empowering effect on the HIV+ participants, not least because the process allowed them to discuss issues around living with HIV with other HIV+ people, and to seek solutions to their problems. It also resulted in HIV+ participants producing media that was different in terms of content as well as presentation to that of the journalists, the HIV+ participants producing media that reflected their personal experiences of HIV and AIDS; the kind of experiences so desperately lacking from the dominant HIV/AIDS communication discourses. When it came to the reception of HIV/AIDS media, the participants - both the HIV+ people and journalists - interpreted media messages in ways that suggested a complex interaction of both cultural and personal factors influenced the reading and understanding of HIV/AIDS communication by audiences.
Apply these findings to real life, and they would suggest that participatory and localised communication that actively involves people living with HIV, recognises the highly-fragmented socio-cultural nature of audiences, and stimulates and allows for informed interpersonal communication, is the key to a more effective use of media in the response to HIV and AIDS. Certainly it sheds doubt on the efficacy at a communal and individual level of national and global communication campaigns such as those developed by various UN agencies and governments, many of which now aim to promote the rights based approach.
Africanising the rights based approach?
This brings me to my opening quotation by Steve Biko. Biko made this remark in reference to the view expressed by then-Zambian president, Kenneth Kaunda, who argued that, being a “pre-scientific people”, Africans “do not recognise any conceptual cleavage between the natural and supernatural” (Kaunda in Biko 1971: 44):
“They (Africans) experience a situation rather than face a problem. By this I mean they allow both the rational and non-rational elements to make an impact upon them, and any action they may take could be described more as a response of the total personality to the situation than the result of some mental exercise.” (Ibid)
Perhaps the AIDS epidemic is the kind of “natural enigma” Biko refers to in his response to Kaunda’s theory. And, if accurate, Kaunda’s analysis of the response of Africans to such an “enigma” may need applying in responses to HIV and AIDS in Africa. To date, responses have tended to be modelled on Western approaches that Kaunda, for one, may have argued are antitheses to his fellow Africans1. In particular, Western models of linear, top-down HIV/AIDS communication campaigns have failed to take sufficient account of the cultural environment in which they take place (Airhihenbuwa, 1995; Airhihenbuwa, Makinwa & Obregon, 1998; Crimp, 1988; Tulloch & Lufton, 1997). Which may explain their lack of efficacy in African contexts (Lush and Gunter 2000, Tomaselli & Shepperson, 1998). Echoing Kaunda, Airhihenbuwa (1995: ix) argued that many African cultures embraced “multiple truths relative to health, education, politics, religion, valuation, and thus decision-making processes”:
“This ideology, which shuns the “all or nothing” mentality of Western culture and its attendant promotion of universal truths, should be understood not only for its counterpoising principle and quality, but as a different genre.” (Ibid)
For all the apparent weight attached by the UN system to the rights based approach, “until very recently the main focus of UNAIDS, and the focus of all national and regional programmes to do with HIV and AIDS, has been on the clinical-medical and behavioural levels” (Barnett and Whiteside 2002: 73). As a result, little attention has been paid to the “broader factors” that contribute to the development of “social and economic environments … in which infectious disease can expand and develop rapidly into an epidemic” (Ibid).
In which case, we need to go further in understanding these “broader factors” within various African contexts, and developing responses that are more in tune with the values and beliefs systems that Biko, Kaunda and Airhihenbuwa point to. We need to understand, for example, the fatalistic attitudes young Namibians have towards HIV and AIDS; fatalism that has resulted in 60 per cent of young people in the Namibian capital Windhoek believing it possible that they could become infected with HIV in the subsequent 12 months, despite being highly aware of how HIV is transmitted and how transmission can be prevented (JHBSPHCCP 2003: 12). Meanwhile, other studies (Talavera 2002, Fox 2002, Tersbol 2002 and LeBeau 2002) have indicated that current responses to HIV/AIDS in Namibia, notably communication campaigns and their prevention messages, have failed to take into account the cultures, beliefs and value systems of various indigenous Namibian communities.
A rights based approach for Namibian communities
Perhaps the answers to such dilemmas lie with the communities themselves. In its HIV/AIDS communication framework (Airhihenbuwa, Makinwa, Frith and Obregon 1999), UNAIDS called for participatory approaches to HIV/AIDS communication that embrace culture, spirituality, economic resources, gender and family relations, as well as “the policy and rules that govern interaction in the home”. But this approach focuses on global application, and needs to be translated into initiatives at a more local level; something UNAIDS and governments may not be best placed to do.
With the UNAIDS communication framework in mind, Lush and Gunter (2000) proposed an “empowerment cycle” model (see diagramme below) for advocacy and communication which a consortium of Namibian NGOs is now looking to apply in pilot communities in Namibia (Lironga Eparu et al 2003). This model looks to involve HIV+ people in advocacy and communication initiatives that seek to influence attitudes, behaviour and perceptions that prevent people from addressing HIV in their lives (Ibid). After all, “as the carriers of HIV, HIV+ people are well placed to prevent the further spread of the AIDS virus” (Ibid).
The project recognises that a whole host of cultural and personal factors influence whether or not HIV+ people are able to avoid and / or prevent behaviour that results in the further spread of HIV. Such behaviour extends beyond practising safer sex, to include:
‘Empowerment Cycle’ (Lush and Gunter 2001)
Therefore, through a series of research-based advocacy and communication activities in pilot Namibian communities, the project seeks to “promote the creation of a supportive environment that encourages and enables community members to: be tested for HIV; accept and ultimately disclose their HIV status (positive or negative) to others, in particular to their partners and family members; and adopt behaviour that prevents the further spread of the virus and prolongs the lives of those already infected” (Ibid). In so doing, the project looks to develop an approach to advocacy and communication that could be applied elsewhere in Namibia and beyond.
This project recognises the relevancy and importance of a rights based approach to HIV and AIDS, but seeks to apply it at the levels at which stigma and discrimination are most potent. In so doing, it seeks to give space to an “activist discourse” that is influenced by those living with HIV. By their very nature, such participatory approaches should take into account the historical, cultural, sociological and economic dimensions of the African communities in which they take place. They may also give voice to the notions of Black Consciousness espoused by the likes of Biko three decades ago, and thereby counter the double-edged stigma attached to being black and HIV+ that doubtless so many HIV+ Africans feel in post-apartheid, post-colonial African societies. Such stigma contributes to the perception, illustrated by the findings of the Lironga Eparu research (Lush et al 2003) that HIV+ Namibians are at worst outcasts, and at best helpless victims. Reversing such perceptions is crucial given that “victims can have no point of view for precisely as long as he thinks of himself as a victim” (James Baldwin quoted in Watney 1989: 147).
This critique, therefore, recognises the importance of the rights based approach, and salutes those who are promoting it at a national and international levels. Advocacy around the rights based approach needs to continue at these levels. Governments constantly need to be held account to their rights obligations, and encouraged to do more to implement the rights based approach at a national level. Also, great deal more needs to be done to hold multi-national bodies – drug companies in particular – accountable to their universal rights obligations. Meanwhile, the immunity of the Global Fund to international politicking has to be boosted. But all this should done with a clear understanding that such efforts alone will not address stigma and discrimination at the level at which they are most potent, and that local and community based initiatives are the key to the rights based approach succeeding.
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1 “He (the Westerner) is vigorously scientific in rejecting solutions for which there is no basis in logic. He draws a sharp line between the natural and the supernatural, the regional and non-rational, and more often than not, he dismisses the supernatural and non-rational as superstition.” (Kaunda quoted in Biko 1971: 44)
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