Understanding HIV/AIDS As a Social Responsiblity

[Guest guest]

Dear Forum,

The following is a brief report of a workshop we had organised at the Asian

Social Forum, Jan 2003. We could also post published copies to anyone

interested.

Best wishes,

Ritu Priya

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 organising committee of the Asian Social Forum for

providing the opportunity to organise 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 organising 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 endeavour of organising 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 Optimising Social and Medical Interventions

AIDS control efforts reflect the best and the worst face of globalisation. How

are the dual sides manifest in relation to AIDS and how can we capitalise on the

positive and counter the negative implications? These are the central concerns

while conceptualizing the workshop. Discussions will be focussed 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 ostracising, persons

known to be HIV positive. Even the programme which talks of ¡¥rights¡¦ and

¡¥de-stigmatisation¡¦ does ¡¥targetting¡¦ of socially marginalised 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 recognised questions, which are often not answered, arise from such

negative outcomes

¡P Why have we promoted the fear and stigma through our IEC?

¡P ƒnWhy was care and support a low priority for the programme?

¡P ƒnWhy have the medical professionals not been trained to respond to HIV

¡¥scientifically¡¦ and ¡¥rationally?

¡P ƒnƒnWhy 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,

homogenising 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 emphasising 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 behaviour 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 behaviours. However ¡¥Social Responsibility¡¦ can become patronising 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

globalisation, can it help us rethink the responsibility of the following:--ƒn

¡P ƒnthe state towards wellbeing of its citizens,

¡P ƒnthe public health system towards society for providing epidemiologically

rational and socially contextualised democratic programmes,

¡P the medical system and professionals towards the patients,

¡P the media communicators towards socialization processes,ƒn

¡P ƒnthe community towards its members, andƒn

¡P ƒnpartners 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 wellbeing. We hope the discussions will help

us all develop our ideas for promoting a societal environment that effectively

minimises the suffering caused by AIDS and its control strategies. Such a

conceptualisation challenges the very basis of present day globalisation. Any

vision of ¡¥Another Asia¡¦ can become ¡¥Possible¡¦ only through tangible

alternatives to dealing with people¡¦s problems.

¡V Ritu Priya

E-mail: <ritupriya@...>