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In
2005, India
received the dubious distinction of having the largest HIV infected population
in the world overtaking South Africa.
While
trials for HIV vaccines are going on in Pune, India and in other parts of the
world, it is important for the world to understand that what was illiterately
and ignorantly known as the “gay plague” in the early 1980s in the USA, is
now proving to be the fastest growing killer disease in the world.
Life
is a struggle for many Indians. But for children who are HIV positive, have full
blown AIDS or whose parents died of AIDS, they are unable to defend themselves
against the social prejudices. Fear and cruelty that exist due to the lack of
awareness and the social taboo surround the words “HIV/AIDS” in India. Have you ever wondered what happens to these children? Manorama Pinagapany did
and decided to do something about it.
Mahatma
Gandhi once said “You must be the change you wish to see in the world.” It appears Manorama decided to follow it to the letter. A doctor by profession,
Manorama was the assistant surgeon in the Pediatric Gastroenterology Department
at the
Institute
of
Child Health
—a hospital for children in Tamil Nadu, the Indian state which recorded the
first AIDS patient in India. In 1993, two orphans were admitted because they had Hepatitis B and who also
tested positive for HIV. Once the two children were known to have HIV, the
orphanage which was caring for them didn’t want them back. When the other
doctors hesitated to treat the children, Dr. Manorama became angry. She says,
“I decided to rear both these children because they were discriminated so
badly.” After six months, she quit her job to take care of the children full
time. At her friend’s suggestion, she formed an NGO to care of not just these
two children but other children who are discriminated against or don’t receive
proper health care because they either tested positive for HIV or were AIDS
orphans. She called her NGO—CHES (Community Health Education Society). Seeing
the children get better with the tender loving care she showered on them, CHES
got more referrals and over 20 children in the first year itself.
With
the increasing number of children, Manorama couldn’t manage to attend to all
the 20 children. Hiring others to take care of the children was not an option as
CHES was not funded at that time. So she came up with an innovative idea.
Dr.Manorama says, “We took in women who were HIV positive, destitute and
thrown out of families. We made both ends meet. The women were offered shelter
and food and in return they took care of the children. This worked well.”
Manorama
Devotion
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Helping
children with AIDS is a full-time job, yet Dr. Manorama seeks to promote
awareness for everyone
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Born
in Chennai, the capital city of
Tamil Nadu, the southernmost state of India, the younger of two children, Manorama became interested in medicine at
the tender age of six. According to her, “When I was in the second standard,
my father showed me a front page newspaper clipping of a doctor from Madurai
called Manorama who got first class in M.B.B.S. [Bachelor of Medicine/Bachelor
of Surgery], which was rare those days. He also told me the story of Florence
Nightingale. Both of this inspired me to do medicine.” Unlike many children
who give up their dreams as they get older, Manorama persisted and became a
doctor. Today she is Dr. Manorama, M.D., DCH, DM (Gastro).
She
chose to give up her lucrative practice as a pediatric surgeon to take care of
socially stigmatized children who didn’t receive proper medical care. Why?
Because the doctoral profession is all about saving lives and community service,
mainly to those who are sick and dying. “The best aspect about my job is when
I bring back a life from deathbed and provide quality life till he/she dies—a
death with less pain and suffering and with dignity,” says Dr. Manorama.
However,
Manorama Pinagapany was not satisfied with just helping children. Some of the
HIV positive women she hired to take care of the children turned out to be sex
workers. They told her about how they had contracted AIDS due to low
condom usage by the male clients as the men refused to wear them. She was irked
by this as she realized working hard on helping the affected was not enough and
that creation of awareness was more important, which could lead to prevention.
So
CHES began to conduct mass awareness programs in Tamil Nadu, to increase
awareness about high risk behavior. They roped in film celebrities for
entertainment combined AIDS awareness programs in rural and urban areas. In
between the songs and dances, they talked about sexual transmission of HIV. This
sort of awareness campaign was unique and the response was tremendous. “After
the program, we had a lot of men asking whether they need testing. We tied up
with government general hospital for counseling and got many of our staff
trained as counselors through the famous
Christian
Medical
College, Vellore.”
As
more people came forward for testing, the number of people infected began to
grow and CHES soon started a home based care program for children and their
parents in the community besides the orphans care program in Chennai in 1997.
From then, Manorama has increased the prevention program and as well as the HIV
care program, thanks to partial funding from Family Health International and
private donations. However, getting funding for orphans with AIDS is still a
major challenge she says for according to her many ask, “These children will
die soon why we should spend on them regularly?” So she came up with
innovative ways of raising funds like the “A Donor A Day” where people can
donate small amounts of money on their birth day, wedding anniversary,
Independence day, Festival celebrations like Holi, Diwali, Ramadan, Christmas,
New year, etc.
Longing
for a Home
Today,
CHES not only takes care of over 500 children who are HIV positive and over 680
families in their orphan care and home care programs but are managing to put up
the kids for adoption. Dr. Manorama says, “As we started to grow, I realized
that children were longing for a family more and more. It was my dream to put
these children back in to the community in some way or the other.” So CHES
began to look into foster care and AIDS sensitization. They invited community
members who wished to adopt children to visit the orphan shelter. Those who
visited the home realized the pain and sorrow the children were going through.
The way children rushed to them longing for love moved them. Manorama says,
“One woman came first to take a child, then came the second and soon we had 22
families willing to take children. We were slow, waiting for them to drop out in
case they had made a hasty decision but they stayed.”
However,
CHES has a strict screening procedure to ensure that the children won’t be
mistreated or abused after adoption. So people from CHES went to enquire about
the families, meet with them every day to test their AIDS awareness, counseled
the would-be foster parents, etc. In the first adoption of its kind in India, CHES successfully let three HIV positive children be adopted. CHES workers
visit them every third day to make sure the children are treated right as all
these foster parents have children of their own. Processing is going on for the
other 19 families who also sought children.
At
CHES, children, 80% of whom are HIV infected are provided a safe space to live
in, given routine medical care and treatment of opportunistic infections. All
the children are provided education, of which eight children are studying above
the 4th class, are going to regular school after informing the school
authorities. All children are provided recreation like games, picnics, free
medical treatment, and specialized counseling through trained counselors besides
love and care. They also go through life skill education sessions to meet the
challenges in this world and are encouraged to discuss about AIDS and their
anxieties.
Dr.
Manorama says her work isn’t over yet. She hopes to get enough funding to
provide the expensive Anti-Retroviral Therapy to all her children as this would
help increase their life spans considerably and boost AIDS awareness among the
masses through a slew of programs right from the school level. Unfazed by
challenges, Manorama Pinagapany is determinedly moving towards her goal.
For
more information on CHES, you can contact them at:
198,
Rangarajapuram Main Road,
Kodambakkam, Chennai 600 024
Tamil Nadu, India
Tel: +91-44 -24731283
Read
Also:
**
Deepa Kandaswamy
is an award winning writer, political analyst and engineer based in India. Her articles have been published in six continents and some of her writing
credits include ABC News, Ms., Truth Out, Data Quest and
Middle East
Policy. She is the founder–moderator of the International Gender Lobby which
is a global networking platform for individuals, organizations and activists who
are interested in working for human rights, peace and development worldwide.
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