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Discriminated to death

A young Indian couple in Saudi Arabia, a 15-year-old boy in Ahmedabad, a farm labourer in Surat and many others have committed suicide to escape the stigma and discrimination that HIV-positive people face. Why does discrimination continue despite crores of rupees spent on awareness campaigns in the past two decades, asks Ranjita Biswas

Early this April, a young Indian couple committed suicide by hanging from a ceiling fan in their home in the Eastern Province of Saudi Arabia. The police told Arab News, according to a PTI news item, that a suicide note left behind revealed that they were upset after finding out that the wife was HIV-positive.

Back in India, in March this year, a man committed suicide by hanging himself in the bathroom of a Surat hospital after learning that he was HIV-positive. Sandeep Sonar, 35, was a farm labourer.

In July 2006, 15-year-old Santosh Baniya died of burn injuries in Ahmedabad after setting himself on fire when he came to know that his parents, both vegetable sellers, were HIV-positive. He was apprehensive of social ostracism once the close-knit community came to know of this ‘shame’.

Instances of people committing suicide due to HIV/AIDS or related issues keep cropping up quite regularly in the media. Comprehensive information on the number of HIV-positive people who have committed suicide is hard to get. However, in a review article on HIV and psychiatric disorders in the Indian Journal of Medical Research in April, 2005, Prabha Chandra, Geeta Desai and Sanjeev Ranjan note that “HIV infection with all its negative connotations and discrimination can be a harbinger of future suicidal ideation (thinking about suicide) or completed suicide.” They also refer to a study by an MD student of 100 HIV infected persons admitted to a care centre in Bangalore that found that 41% had thoughts of suicide. “An important finding of this study that has implications for policies and training was the finding that healthcare-related stigma was highly correlated with suicidal ideation and its severity.”

The disturbing thing is that more than two decades after AIDS infection was first detected in the country in 1986, and after crores of rupees have been spent on awareness campaigns, the stigma and discrimination around the disease persists to a large degree. A decade ago, in 1998, a 26-year-old widow suffering from AIDS set her two children on fire and committed suicide in Bhiwandi, Maharashtra. And more recently, in Orissa, a woman was hounded out of her home after her HIV status became known. Even a woman getting infected due to her husband’s risky behaviour is not spared. If the husband dies, the woman becomes even more vulnerable to torture -- physical and mental -- and it is very likely she will lose the roof over her head -- cause enough for desperate action. The above-mentioned review article also notes: “Stigma has been considered as an important variable in predicting suicide and has important implications for India.”

The situation is no better among the so-called educated populace in urban areas. Medical doctors refusing to treat AIDS patients or nurses refusing to attend to them is quite common. A 2006 UNDP study (‘The Socio Economic Impact of HIV and AIDS in India’) found that 25% of people living with HIV in India had been refused medical treatment on the basis of their HIV-positive status. Evidence of stigma was rampant in the workplace, with 74% of employees not disclosing their status to their employers for fear of discrimination. Of the 26% who did disclose their status, 10% reported having faced prejudice as a result. It is more pronounced among people in marginalised groups like female sex workers, hijras (transgenders) and gay men. They are often stigmatised not only because of their HIV status, but also because they belong to socially excluded groups.

A study by the Kerala Health Studies and Research Centre (2000) identified 37 types of stigma and discrimination, “including mandatory testing during employment, lack of confidentiality, denial of employment and also expulsions, towards HIV/AIDS-infected persons,” according to Dr Joy Elamon, who did the study along with Dr Jayasree. Kerala was selected for the study because of its high educational and health status and awareness levels.

No wonder then that many HIV-positive people choose to end the misery themselves rather than continue living.

“It is not just the disease but other pressures -- societal, economic, and mostly ignorance plus stigma, that drive them to choose the option of ending their lives,” says Pawan Dhall, director of SAATHII, an NGO in Kolkata. He cites the example of a transgender member of MANAS Bangla (MSM Action Network for Social Advocacy), a network of MSMs in Kolkata, who committed suicide after a bad experience in a government hospital in 2005. First, he was under tremendous pressure at home for his apparent ‘femininity’. Then he was diagnosed with HIV when he was admitted for surgery. He went into depression apparently when he overheard the doctors discussing his case with remarks like ‘What’s the point of operation? He’d die anyway’.

Adds Anis Ray Chaudhuri, director, programme, MANAS Bangla: “He was a member of our staff. He was in tremendous pain most probably from cancer in the stomach when his HIV-positive status became known. We had even taken along the injection needed but there was no one in the hospital willing to give it to him. He came home and committed suicide.”

Dr Elamon’s study, too, found cases where the hospital staff refused to attend to patients. “Moreover, there is no facility in most hospitals to maintain confidentiality,” he elaborated.

“The whole attitude, even among medical professionals and paramedics, is eta oder hoi, amader noi (it happens to ‘them’, not ‘us’), and this ‘otherness’, imposed by society, puts tremendous pressure on the community of Lesbians, Gays, Bisexuals and Transgenders (LGBT). In any case, we observe a marked tendency towards self-destruction among members of this community. Vulnerability is already there -- the feeling that ‘I am not accepted by society’ -- and when one comes to know about the HIV-positive status, the vulnerability increases manifold,” Ray Chaudhuri says.

This is important. In a 1988 study conducted under Dr Peter Marzuk, a psychiatrist at Cornell University Medical College, New York, the findings of which were later published in The Journal of the American Medical Association (JAMA), it was found that the suicide rate in AIDS patients was markedly higher than the rate in cancer patients and in patients with many other chronic and eventually fatal diseases.

The study examined data on suicides and AIDS patients in New York City in 1985. Of 3,825 individuals who were alive with AIDS in all or part of that year, 12 were known to have taken their own lives. This data indicated that men with AIDS were 36 times more likely to commit suicide than the entire population of men 20 to 59 years old, and 66 times more likely than the general population. The study included both men and women, but none of the women with AIDS committed suicide. The researchers said there were too few women with AIDS in the study to draw any conclusion on a suicide rate.

People may contemplate suicide more seriously as the illness progresses. In another study on suicide and HIV infection published in JAMA (December 4, 1996), A L Dannenberg and others of the Johns Hopkins School of Public Health suggest that "Because suicide risk is reported to be greatly increased after symptomatic HIV disease is present, clinicians should consider asking persons with HIV infection about suicide risk factors during both initial counselling and subsequent medical care."

Another point that Marzuk made in his study was that some AIDS patients who killed themselves might have done so because their cries for help went unheeded. ''Most of the time, suicide is very preventable if you catch people early,'' he had commented.

This finds resonance in Dhall’s observation that the care and support services provided for HIV patients should include “distress counselling as an essential part”. Shuru, a film made by SAATHI as support material to allay the stigma attached to AIDS, tries to show people living a ‘positive’ life even after contracting the disease; this helps to allay the desperation in some. The fact that availability of ARV has dramatically changed the lives of many HIV-positive people can be a useful component in counselling sessions, assuring patients that life is not about to come to an abrupt end after all.

Ray Chaudhri also says that at the Drop-in Centres (DIC) of MANAS Bangla where field workers conduct health education sessions, the emphasis is during counselling sessions is on building up self-confidence. “To instil the confidence to live like any other person in a society that is largely homophobic, is the first step. Even in HIV/AIDS awareness campaigns, this attitudinal change is very important,” he feels.

As psychotherapist Jolly Laha of Kolkata, points out, “Terminal diseases can cause huge stress in anyone. He/she wants to live, which is basic to human beings, and now everything turns topsy-turvy for the person. ‘Waiting for death’ can be very traumatic and suicide might give a sense of being in control of one’s fate. Counselling at these times needs to emphasise the importance of the ‘quality of life’. We have seen that positive thinking adds to a patient’s sense of well-being, even physically.”

Care-givers can make a huge difference if they lead by example. This can be seen at the Mar Kundukulam Rehabilitation Centre near Trissur in Kerala, which has been giving shelter to and treating patients discarded by family and friends because of their HIV status. Many of the inmates learn to live again after contemplating suicide, according to one of the founders, Father Varghese.

A positive step could be the long-awaited AIDS anti-discrimination bill that the health ministry plans to table in the coming monsoon session of Parliament. The bill seeks to prohibit any social or financial discrimination against those affected by the virus. It has underlined provisions like right to equality, right to autonomy, right to privacy and health, right to safe working environment and right to information for all HIV-positive people.

(Ranjita Biswas is a journalist based in Kolkata writing mainly on women and gender issues, HIV/AIDS and environment. She is also Editor of Trans World Features)

InfoChange News & Features, May 2008