RETHINKING AIDS AS SOCIAL RESPONSIBILITY: Report of a Workshop at the Asian Social Forum January 2003, Hyderabad, India

Dialogues on  Strategies for AIDS Control in India/South Asia

Organised by: Swasthya Panchayat ¡V Lokayan 13, Alipur Road, Delhi-110054
Centre for the Study of Developing Societies  29, Rajpur Road, Delhi-110054
ActionAid India -88, N.D.S.E.-II, New Delhi - 110049

Acknowledgements

All of us owe a debt to the organizing committee of the Asian Social Forum for providing the opportunity to organize such a workshop and relate to wider issues and socially committed people.

I am grateful for the trust reposed in me by Prof. Dhirubhai Sheth and Vijay Pratap of the Centre for the Study of Developing as well as Shri Harsh Mander and Sandeep Chachra of Action Aid-India. Their active support in suggesting and mobilizing speakers as well as organizing the logistical support merits a big thank you.

Without the active involvement of the participants, the workshop could not have been as enriching as it was. The enthusiasm of all the speakers when initially approached gave me the energy to persist in the endeavor of organizing this workshop and I am grateful to them for giving their serious input and time.

 

The Concept Note

Rethinking AIDS Control Strategies: Social Responsibility, Pluralism and Mutuality for Optimizing Social and Medical Interventions

AIDS control efforts reflect the best and the worst face of globalization.  How are the dual sides manifest in relation to AIDS and how can we capitalize on the positive and counter the negative implications?  These are the central concerns while conceptualizing the workshop.  Discussions will be focused on the issue of creating a conducive macro-environment for:

(i) Care and Support for People Living with HIV/AIDS in India/South Asia, highlighting the reasons for the problems being faced by the PLWHAs and how to overcome them, and

(ii) The notion of Responsible Sexuality for control of HIV transmission.

The massive mobilization that occurred globally to deal with this health problem so early after its recognition in human populations is unprecedented for any disease.  The use of ¡¥human rights¡¦ so centrally in AIDS discourse is also for the first time in relation to any disease control programme.  Both these are positive elements of the AIDS control efforts.

However, the violation of rights of the affected groups in the South Asian context, despite the proclaimed pursuit of human rights, reflect the negative elements. Stories in the newspapers, experiences recounted by HIV positive persons and medical colleagues, all tell of how doctors turn away patients who are HIV positive, using some pretext or other to avoid treating them.  Worse still, many are told by the doctor that they should just go home to die! The public health system is often unreachable by patients and when reached, is unable to provide adequate treatment for the opportunistic infections they suffer from time to time (like T.B., fungal infections, diarrhoeas, pneumonia etc.) due to lack of drugs.

The community often stops interacting with, if not actively ostracizing, persons known to be HIV positive.  Even the programme which talks of ¡¥rights¡¦ and ¡¥de-stigmatization¡¦ does ¡¥targeting¡¦ of socially marginalized groups.  While the condition of women in prostitution has become an area of concern (which is a long overdue issue needing attention), their numbers are increasing rapidly and girls of younger age are being brought into the trade as a direct fallout of the focus on ¡¥sex workers¡¦ as spreaders of HIV.  Efforts at awareness raising¡¦ about AIDS added to the stigma rather than decreasing it. 
Some widely recognized questions, which are often not answered, arise from such negative outcomes 
Why have we promoted the fear and stigma through our IEC?
Why was care and support a low priority for the programme? 
Why have the medical professionals not been trained to respond to HIV 
               ¡¥scientifically¡¦ and ¡¥rationally? 

Why is ¡¥gender sensitivity¡¦ not an issue for the progamme? 
All this and many more such issues pose challenges for AIDS control efforts today.  They make it imperative that we rethink the conceptual basis and value positions that underlie and shape the larger approach of AIDS control. 
It can be argued that these negative elements stem from the monolithic, homogenizing nature of the response shaped by perspectives of the ¡¥north¡¦.  It has isolated HIV/AIDS from other public health problems, promoted technological and managerial solutions ignoring the social and culturally rooted humanistic dimensions (such as emphasizing condoms while ignoring responsible relationships, focusing on anti-retroviral drugs and ignoring access to treatment of opportunistic infections or simple ways of preventing them, promoting disposable syringes ignoring the practice of universal precautions by the medical system, or behavior change through ¡¥communication techniques¡¦ without addressing the structural causes of vulnerability to HIV).  It promotes neo-liberal and market-friendly perspectives not only in the biomedical sphere of drugs and medical equipment but also in the social sphere, such as the commodification of women as sex objects. This is at the cost of a holistic 
 approach suited to the local social, economic and health situation.
Lack of accountability to local peoples and undermining of a sense of responsibility towards any relationship as a social value can be viewed as a major source of these negative outcomes. From the global, to the national, to the community, and the individual HIV/AIDS prevention and care demands ¡¥responsibility¡¦ while the dominant AIDS discourse uptil now has only undermined its validity. ¡¥Human Rights¡¦ as individual freedom has been the value frame and ¡¥Responsibility¡¦ has been posed in opposition to it.
Recognizing the central importance of ¡¥Human Rights¡¦ in AIDS discourse, a basic proposition, which is open for discussion at the workshop, is that in addition to Human Rights an environment of ¡¥Social Responsibility¡¦ is essential for care and support to PLWHAs as well as for practice of responsible sexual behaviors.  However ¡¥Social Responsibility¡¦ can become patronizing and coercive, therefore also essential is the idea and  practice of ¡¥Pluralism as a social asset¡¦ as well as ¡¥Mutuality of responsibility¡¦ in the various related spheres.  The challenge is how to knit them together and translate them into ground reality in the South Asian context.

What would Social Responsibility mean when knit together with Human Rights and Pluralism in the specific context of HIV/AIDS in South Asia? In the era of globalization, can it help us rethink the responsibility of the following:--
the state towards wellbeing of its citizens,
the public health system towards society for providing epidemiologically
         rational and socially contextualised democratic programmes,
the medical system and professionals towards  the patients,
the media communicators towards socialization processes,
the community towards its members, andfn
partners in interpersonal relationships including sexual relationships.

Care and support of PLWHAs and the practice of ¡¥Responsible sexuality¡¦ at individual level can be envisaged only in an environment where social responsibility is also evident in other spheres. The challenge is to develop an environment of social responsibility without a constriction of creativity, diversity or individual freedom and well-being. We hope the discussions will help us all develop our ideas for promoting a societal environment that effectively minimizes the suffering caused by AIDS and its control strategies. Such a conceptualization challenges the very basis of present day globalization. Any vision of ¡¥Another Asia¡¦ can become ¡¥Possible¡¦ only through tangible alternatives to dealing with people's problems.

¡V Ritu Priya
E-mail: <ritupriya@vsnl.com>