Stigma
Suniti Solomon,
M.D.
2000 years ago leprosy had a great deal of stigma. 2000
years later the stigma persists in parts of the globe, e.g., in India. Since then there were hundreds of infectious
diseases unearthed. In the 1950s about
8 million people died of Small Pox every year and many millions more were
severely disfigured. Yet there was no
stigma, only fear, because it was a highly contagious airborne disease. While the plague that had terrorised and
killed millions of people down the years had been brought under control, the
battle between microbes and people was far from over. The Great Pox, which we now know by the name syphilis, was
transmitted by sex. A quarter of a
century after Columbus’ return to Spain in March 1493, his crew was treated for
Great Pox, which was believed to be a disease of the barbarian native tribes of
America. Today we have treatment for
syphilis, but its stigma, though reduced, is still present.
AIDS was first detected in the gay
community and was called GRID or gay-related immune deficiency. The community heaved a sigh of relief that
we don’t have such a community, so AIDS will not set foot in India. Twenty years later the workers of Bharosa
Trust and NAZ foundation International in Lucknow were arrested and put in the
prison on the 7th of July 2001 for working on issues relating to
HIV/AIDS with the MSM (men who have sex with men) community. The charges levelled against the workers
include section 377, violations of the obscenity laws. The workers have been denied bail by the
Chief Judicial Magistrate and the Sessions Court on the grounds that they are a
“curse on society.”
First negative messages on AIDS
In the early period of the epidemic, it
was said, “prostitutes get this disease due to multi-partner sex. Prostitutes spread the disease. They are
immoral – hence ‘we’ are not such persons – we are safe.” Around the same time we had messages that
long-distance truckers get this disease because they have multiple sex partners
along the highway. “So you and I will
not get it.” The third message was from
North East India that those who were Intravenous Drug Users get it by sharing
needles. The belief was: “They deserve
it. We are not IDUs. So we can relax.” This has made an impact on the community that this is a disease
of gay, IDU, prostitutes and people who have MPS. Two decades into the pandemic now, unfortunately, our studies
clearly demonstrate that 90% of women who attend our clinic have only a single
sexual partner, i.e. their husband.
Thousands of children are infected.
All strata of our society are infected and affected by HIV. But now it is too late to undo what has been
impregnated in the minds of the society.
The stigma stays on.
Imagine, HBV is spread by the same routes as HIV but a person with HIV infection is treated with Tender Loving Care because when it was first detected and described it was called as ‘serum hepatitis’ and it was said it spread by blood and unsterile needles. Society uses terms such as ‘innocent victims’ for children and those who get it through blood transfusions, which adds to the stigma. None of us are saints and hence we have no right to call anybody else sinners.
Dominic D’Souza, a regular blood donor while employed by the Goa branch of the World Wildlife Fund (now Worldwide Fund for Nature) was taken to a local hospital under armed guard in February 1989. It was only when he saw a register with ‘AIDS’ written in bold across the cover that he realised he was positive. He was held at a tuberculosis sanatorium under armed guard to ‘protect him’. No one touched him and food was left at the door of the cell. But through demonstrations and protest marches his family and friends pushed Dominic’s plight into public focus. He was released after 64 days in the sanatorium but WWF sacked him.
Man lynched, burnt alive by
mob
A news article on the front page of a local daily:
Chennai, Apr 26: An unidentified man in mid-thirties was
lynched and then burnt alive by a mob in Cheneerkuppam, about 25 km from the
City today. This was in wake of rumours
floating around that a gang, which had threatened to poke people with
AIDS–infected needles was doing rounds in that area. The angry villagers stated that the unidentified man was seen
with a syringe, a cell phone and a pager in his hand and acting in a suspicious
manner. Since he was from a northern
state in India, he did not speak the local language – Tamil. The man was dragged to a tree and tied. His cries of innocence fell on deaf
ears. The agitated mob thrashed him and
later dragged him in a bleeding and unconscious state, pored diesel over him
and set fire to him. This was done to
prevent the infection from spreading.
Stigma within the public
sector
When Chiranjeev died, the doctor pronounced “Death due to
AIDS.” Nobody wanted to touch the
body. The wife bundled him up and
carried him to the crematorium grounds.
The pujari who had heard about it asked her to burn the body
herself. Left with no recourse, she
picked up bits and pieces of wood left out from the previous cremations and
took it off to a far-off space and paid the last respects to her beloved
husband. On going home she was shocked
to note that the electricity and water supply had been cut and her two children
were crying outside. The family and
neighbours had deliberately done this because they did not want them to live
there as her husband had died of AIDS.
Do not spread your infection to us, they screamed at her. Abandoned by one and all, she felt all
alone. No husband, no home and no
family, she took her children and walked on, never looking back once.
Stigma within the
hospital
28-year old Malathy was extremely excited. Her second-born child was a son, too. Now she had everything in the world. She opted to undergo the tubectomy, little knowing how this decision would affect her life forever. Pre-operation, the hospital drew blood for various tests. Immediately post operation, the doctors were distressed and informed her husband that she had ‘AIDS’. They threw her out of the hospital and told the husband to keep her isolated and not to allow her to touch the baby.
Malathy, distressed beyond knowledge, sat alone for three days. The servant gave her food and water. She did not eat anything. On Day 3, there seemed like a foul smell coming from her room. Her husband thought, “This is it, this is AIDS, she is going to die.” He called for her parents and they were shocked to see their daughter’s condition. Her brother, a pharmacist, touched her and hugged her. Malathy had not been touched for five long days. This act from her brother brought her out of her feverish state and she begged her family to do something. Her brother picked her up, put her in the car and drove down to Chennai. At the YRG CARE office the smell was indeed bad. The nurse checked it out. S he pulled out a cotton swab, which had been left it in the vagina post delivery. The swab was dripping in blood and pus. The hospital had discharged the patient without proper care.
Stigma at the workplace
Support systems do not exist for young women who become
widowed so early in life because of untimely death of the husband infected with
HIV. Discrimination in employment, a
means of livelihood, was denied to Mrs. K, whereas if it was given it would
have been a source of income for living as well as medical care, and would have
restored her confidence and esteem.
Despite the fact that her husband had worked for the Government of
India, on his death, the job, though applicable to her, was denied on grounds
that she would be incapable given her HIV status. Very often people are dismissed from their jobs because of
AIDS. An HIV test is mandatory, without
the employee’s informed consent. The
test result when found ‘positive’ is issued to the employee with orders for
their termination. This stigma at the
workplace from the management is reinforced by colleagues who often put
pressure upon the management to dismiss the person.
Stigma in the school
BK was a happy lively child. He went in and out of hospital — a regular routine for hemophiliacs. At times, he was unable to play with the other kids and sometimes missed school. One day, the doctor informed his parents in the presence of the child, “BK has AIDS.” The parents were shocked. They had been taking such care of the child. Coping with all these stresses, they finally broke down. Unable to comfort them, BK, six years old, kept asking them what had happened. On seeing his friends in the colony, he screamed, “Mama and Papa are very upset, I have AIDS!” The neighbourhood buzz spread like lightning. The kids were forbidden from playing with BK. The news spread to his school. The principal gave in to the pressures from the parents and asked BK’s parents to take him home as there was no place in that school for an “AIDS student.” This seemed like the last straw. Now BK is 14 years old. He has been through much. He has two life threatening conditions to bear with. “HIV and Stigma.”
Stigma within the
family
This is the plea of a mother who was driven to despair because of perceived social ostracism for her family because of her son’s HIV positive status. In India, a woman cares for her young one much past their adult life. Moreover, a son is a blessing from the Gods. For a mother to reject her firstborn son is the ultimate response to all issues related to stigma and discrimination within the family. Faced with the task of getting her daughters married, the mother was anxious lest her daughters would be rejected on grounds of her son’s HIV status. Also she feared discrimination and stigma from the community. She pleaded, “Kill my son, it will save six lives.”
“I live in the hope of a world that will be free not only of disease but of fear and discrimination” – Dominic D’Souza, Late HIV/AIDS Activist.