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Rethinking AIDS as Social Responsibility

Asian Social Forum, Hyderabad; 4th January 2003

(Organised by Swasthya Panchayat-Lokayan, Centre for the Study of Developing Societies, ActionAid India)

 

 

 

 

 

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Dialogues on Strategies for AIDS Control in India/South Asia

Dyscounts, Discounts or Recounts? The mismeasure of HIV in India

Vijay Thakur, Psychotherapist & Coordinator for a Network of HIV Related Community Based Interventions

"Not everything that can be counted counts, and not every thing that counts can be counted"

– Albert Einstein

Abstract

It is more than a decade and a half since the specter of HIV looms over India and we have seen but two types of counting, one count tells us how many will be affected in the next millennium and then what will the epidemiological figures for HIV reveal in the first decade, the other count tells us, how many dollars or sterling pounds have made their way into India in the name of ‘ AIDS’, and how much more may be available.

On the other hand there is discounting of those who are already affected and reaching out for care and support. But there is another discount the kind that is usually seen during festival seasons. This, in the name of AIDS has been made available to AIDS managers, researchers, experts of a sundry kind and trainers.

The dyscounts are in the area of projecting success, of constructing and then projecting the success of policies, plans and projects.

The presentation argues that it is time to reorganize the types of counting and measure the discounts that have been doled out, and also challenge the claims presented by the discounts and remeasure the success or failures before charting the course for actions in the future. Despite the tenor of the alliterative title of the presentation I have prepared this essay not with the intention of calling up fraudulence or to transfix any blame, a common reflex evoked by HIV/AIDS, but to demonstrate that mismeasures are a reflection of the social and cultural class of the persons in control of both what they do and what they measure. I have drawn from case examples and personal experiences and anecdotal reports from the print media to weave them into the format of the presentation.

If at all we are to salvage the rapidly narrowing window period for a sensible response to the epidemic then we will need to measure the values of what has happened from another locus and also plan for the future from another platform.

For the sake of brevity I will shortlist recounts that I feel may assist us to be not only saner but also more effective:

  • Instead of counting the AIDS-Budget let us have the count of the budgets for Health, school education, poverty alleviation and civic amenities of the central and state governments.

  • Instead of projections for the future of HIV infections let us collect the number of persons who have been rejected from the health care services on the grounds of HIV infection.

  • Instead of infrastructures for AIDS Societies and NGOs let us have an infrastructure of a legal and social framework for separated, divorced and widowed women (not necessarily HIV related), prevention of discrimination in care and penalty for those who obstruct self-protection.

  • Process evaluation reports of all organizations made public every year and effectiveness evaluation every 2 years on a central database along with the agencies and methods of evaluation. (not self-reported stories of success).

  • Instead of a moratorium on NGOs, let us ensure community participation from planning stages and place a moratorium on researchers and transnational technocrats (actually ideologues, which I hope to have demonstrated).

  • An independent study of the effectiveness and impact of VCTCs and antenatal antiviral treatments must be a top priority since these are the largest HIV related programmes enforced in India today.

  • Empower and certify graduate nurses to prescribe a short list of about 40 drugs which are sufficient for good medical practice and permit them to engage in private and family practice like the so called general practitioners in India. This will be much more effective than trying to push reluctant doctors into the villages and towns.

  • A State level citizens group which will be empowered to collect and collate information and make public their discoveries. This should be allocated funds to hire services of recognized academic institutions to conduct quantitative as well as qualitative studies.

  • Instead of numbers, research with the method of oral history and publish narratives of individuals as the key instrument of an awareness that has a face.

  • Finally recall all the ideologues that misguided the nation and make them accountable for their words and deeds.

Conclusions

I might have very well borrowed the title of my talk from Leonard Cohen’s song "Everybody Knows", since most of what I have said is well known to almost all connected, in anyway with HIV in India.

What happens in the name of HIV is also not unique to it alone. The survivors of the Union Carbide negligence in Bhopal still await justice and succor, traditional fisher folk wage a flail battle with rich trawlers and prawn farmers, those displaced by a dozen large dams and projects still await resettlement and compensation, environmentalists continue to catalogue the dismaying degradation of our natural ecosystem, reports of the debasement of women seem to be treated as a literary enterprise, hunger deaths are passed of as enteric fever, indigenous races, the so called tribes, face either covert eugenics or genocide. It will be too much to ask for a different fate for management of HIV.

All these and similar man made catastrophes, in India, emerge from the same template cast by the polity, administrative, business, professional and trader classes, and a servility to experts local or transnational of our country, now for over 4 decades.

Most of the suggestions that I have offered are also not original, and are well known to any person interested in development for the underprivileged and stigmatized populations. Since most treat HIV as a health issue I may add that my words are as yellowed as the Bhore Committee Report and are likely to meet the same fate.

Yet I must speak and, with the belief that perhaps a moth will flutter in this hall and resonate into a storm in some hearts, somewhere, in hearts that will count.

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