INTERVIEW - Meena Seshu, Director, SANGRAM

[Guest guest]

INTERVIEW - Meena Seshu, Director, SANGRAM

" The risk of getting HIV is a gendered risk which places the burden

of the epidemic on the woman. "

Can you tell us about your journey working on HIV/AIDS in India, and

especially with women?

The HIV/AIDS epidemic has singled out people-in-prostitution and sex-

work as `carriers and vectors of the spread of HIV'. Apart from the

stigma already attached to their work, society has further

marginalised them as core transmitters of the HIV infection.

It fails to understand and recognise that they are but links in the

broad networks of heterosexual transmission of HIV. And that they

constitute a community that bears and will continue to bear the

greatest impact of the HIV epidemic. Propagating the myth that

people-in-prostitution and sex work are core transmitters of HIV

serves the purpose of `prostitution bashers' imbued with the moral

and judgmental attitude that reinforces the prejudice that AIDS is

an 'impure' disease that afflicts immoral and evil persons. The net

result is to further target the women which:

- Increases public and police violence against them;

- Decreases their ability to assert themselves;

- Allows customers to demand and force unsafe sex upon them;

- Increases the rate of HIV among sex workers, customers and the

families of the customers and;

- Denies them access to health care services.

The truth is that, women who are in prostitution and sex work are

very vulnerable. They are very often subjected to sexual abuse at

the hands of authorities, including local criminal gangs, petty

political leaders, immigration and police officials. Given the fact

that HIV transmission is most efficient in a situation of repression

and abuse, women in prostitution who have been trafficked are at a

greater risk of contracting HIV.

Women in any community usually have the least access to information,

including information on taboo topics like HIV and sexuality. At the

same time, it is difficult to access women through schools,

colleges, and at public village meetings, since women constitute a

key constituency for the District Campaign, SANGRAM has evolved a

special strategy to reach women and provide them information in a

comfortable setting. The maitrin program recruits women from

villages who can take on a role of a maitrin or girl friend. A

friend is someone with whom one can openly discuss intimate matters,

and this is the role that each maitrin fulfills. Each maitrin

carries the message of HIV awareness to other women in her village,

gets women together to attend village programs and maintains close

contact with the mahila sanghatikas. While the 20-25 maitrins are

voluntary links in the information chain. By the end of 1998, the

District Campaign had organized maitrin meetings in 25 village

clusters - about 1000 women collectively attended these meetings.

Women who are thus informed are likely to pass on their knowledge,

informally and socially in their villages. Some of the experiences

narrated by the maitrins have been touching, in that they depict the

extreme vulnerability of women living within marriages where they

have no control whatsoever on their lives much less on the means to

protect themselves from ill health. The effort is to build support

groups for women in each village such that they can at least address

their grievances to some extent. In the community of women in

prostitution it is seen that infected women get positive support

from the other women in the community. Collectively women contribute

their efforts to get medical, social and economical support for the

infected women. Many a times they do funeral of the person who dies

with AIDS Related Complications. We have yet to see such responses

in the general population.

Women living with HIV carry a double burden. Do you see the

situation improving?

One of the major lessons learnt by SANGRAM's intervention is that

the HIV epidemic is being fueled by society's inequalities. While

poverty, caste, class and sexual minority have a great impact on the

spread of HIV, gender places the burden of the epidemic on women.

The risk of getting HIV is a gendered risk, one that strongly

depends on the actions and behaviors of individual men and women

playing out gender roles that society has constructed for them. If

women face a disproportionately high risk due to their social

status, women also face a greater share of the HIV burden. All women-

single, married, pregnant, widowed or in prostitution-face the

whiplash of gender when it comes to HIV. The discrimination and

stigma they face is much more than that faced by their men folk. The

burden of care also falls squarely on their shoulders. In fact,

HIV/AIDS remains yet another arena where traditional gender

struggles continue to be played out at all structural levels- in the

family, in the community, and in society at large.

Did you face any resistance as you were working on sensitive issues

like sex work and HIV?

Initially yes. But the problem was not with the community; it was

with us as outsiders.

Working with women in prostitution and sex work for the past twelve

years in the HIV/AIDS prevention programme has helped address our

own double standards and bias while dealing with issues related to

sexuality and prostitution.

As our involvement with the women we worked with deepened, our

beliefs, ideas and notions about prostitution and women in

prostitution underwent a sea change. Our perception of prostitution

as 'exploitation, victimization, oppression, loose, immoral,

illegal', was shaken to the core.

Indeed, it was not merely our ideas and beliefs that had to be

questioned and reformulated but even the very use of language to

describe the women had to be transformed. 'Whore 'harlots 'veshya'

have been used as abuses for the 'fallen woman' the subject of much

public discourse. We have toiled to reclaim some of the terminology,

and assert our identities with positive meaning.

We revised our vocabulary to weed out words, which reinforce the

stigmatization and marginalisation of women in prostitution. Hence,

the importance of the use of terminology like 'women in

prostitution' instead of the commonly used term 'prostitute'. Women

who practice prostitution use the term 'women in business' while

referring to themselves. Now after much discussion among ourselves

we have adopted the term People in Prostitution and Sex work [PPS]

to include all persons who 'make money out of sex.'

What do you think are the most important issues confronting the

people living with HIV/AIDS today? In your opinion what all steps

should be taken to empower HIV positive women?

Women in prostitution have not just been stigmatized by society they

have been criminalized.

1. With AIDS, the stigma has increased ten-fold. Manuals on AIDS

control refer to them as `vectors in the spread of AIDS' or `the

bridge population'. This thinking diverts us from coming up with

holistic strategies, involving all sections of society, to combat

AIDS and criminalizes these women further.

2. The most important lesson learnt by SANGRAM is that those trusted

by the community at risk do the most effective education on HIV

transmission. This means that sex workers have the best chance of

helping other sex workers protect themselves from HIV and the

collectives of women in prostitution are most successful at

combating problems within the sex industry, including HIV and AIDS.

There is an immediate need to recognize the lifesaving work done by

the collectives that are non-coercive and promote respect for

marginalized members of society. SANGRAM launched a highway health

outreach program through which smaller women collectives educate

women in prostitution to protect themselves, and access and

distribute millions of condoms a year to sex workers.

3. " When we first came, so many women were going in for abortions.

Many had sexually transmitted diseases. The general wisdom was that

if you took a penicillin shot would help prevent diseases. Today,

the rate of abortions has dropped drastically. SANGRAM through VAMP`

Veshya Ananyay Mukti Parishad' helps women in prostitution to

protect themselves and others " .

The voicelessness of women and increasing violence against those

most affected by the epidemic.

4. Policy makers cling to the idea that the epidemic is limited

to " high-risk groups " as sex workers, drug users and Men who have

Sex with Men and that targeting these groups with information about

condoms and how AIDS is transmitted is the best strategy to contain

the epidemic.

5. Yet this no longer reflects the reality of AIDS, at least for the

Indian states like Maharashtra where it is in the general

population. In these states, women who have sex only with their

husbands may be the group at highest risk of HIV transmission.

6. The long-standing subordination of women and girls in Indian

society takes on lethal dimensions with the rapid spread of HIV.

Though men can experiment with sex outside of marriage without any

social stigma, women do not even have the status to demand that

husbands who may bring sexually transmitted diseases home use

condoms.

7. Many Indian women are experiencing what their African sisters

have known for years: that being left a widow by a man who dies from

AIDS is a ticket to abandonment by his family and dire poverty and

discrimination. And although they are a high-risk group for HIV

transmission and the worst consequences of AIDS, most programs

ignore married women.

8. Even in those Indian states where the epidemic may still be

contained among traditionally vulnerable groups, violence undermines

HIV and AIDS programs. Women in Prostitution and sex work are

continually subjected to violence by police officers, who take their

cue from society's condemnation of these women. The violence of AIDS-

related stigma also confronts AIDS educators, homosexual men and

other marginalized people.

9. The most effective education on HIV transmission is done by those

trusted by the community at risk. This means that sex workers have

the best chance of helping other sex workers protect themselves from

HIV. But peer education is not getting a fair chance in India. The

police apparently do not recognize the lifesaving work done by AIDS

educators, and these people face consistent abuse.

Access to treatment the biggest challenge.

10. Another major lesson learnt has been that HIV prevention alone

cannot succeed, ignoring the needs of millions already living with

HIV and AIDS. Positive people continue to face abuse and

discrimination in the health-care system, and unless they are rich

they can hardly hope for the basics of treatment of even secondary

infections, let alone medicines for HIV itself.

11. Access to health care and treatment services is fast becoming a

dream for people affected and infected with the HIV virus. The

stigma and discrimination is adding to their agony in a real sense

when they realize that the medical establishment refuses to treat

even simple opportunistic infections.

12. India is one of the biggest producers of the drugs that have

transformed the lives of people with AIDS in wealthy countries, yet

millions of Indians cannot get these medicines.

What changes would you like to see in India's AIDS prevention

measures?

A holistic approach is the need of the hour:

• We need a collective review of strategies, policies, laws, legal

institutions and implementing structures.

• Any framework of action must have a bottom up approach.

• Confidentiality must be maintained in order to create services for

sex workers and women in mainstream society to access treatment

especially for HIV related illness.

• Peer education and training programs have proved that the

impossible is possible.

• Sex workers do reach out to sympathetic social workers with the

right attitude.

• Special efforts to build coalitions and alliances must be made to

advocate for change: social, political and legal.

• It is imperative that interventions are influenced by an approach

that places human rights, dignity and the status of vulnerable

groups as the core value.

Are perceptions on sex work changing?

Not really. There is such a judgmental attitude towards sex work

that it will take the prostitutes rights activists a long time

before we can see change in the general public.

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