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)
