Prejudice in HIV-positive woman's death

Prejudice in HIV-positive woman's death

By Husein Habsyi

JAKARTA (JP): Innalillaahi wa Innaa Ilaihi Rooji'uun (We are
truly Allah's and to Him we return). In the first week of this
fasting month, a woman from Karawang, West Java, died in a
private hospital in Jakarta from complications of HIV/AIDS.

Two weeks earlier, the woman, "Mia", was taken to the workshop
of the Pelita Ilmu (Light of Science) Foundation (YPI). As soon
as she got out of the car, Mia lay on the ground because she was
already too weak from infection to stand up.

YPI volunteers immediately took her to Cipto Mangunkusumo
Public Hospital. Upon their arrival at the hospital, they were
told that all the beds for patients with HIV/AIDS were occupied.
Mia, whose husband is a driver working in a neighboring country,
could only afford to pay for treatment at the public hospital.

The volunteers worked hard to find loans so that they could
send Mia to a private hospital. In the hospital Mia was
accompanied by her mother. Once in a while, Mia's daughter, Pia,
also came to the hospital. Pia, only 3.5 years old, is also HIV-
positive. YPI volunteers took turns sitting with Mia and helping
the nurses treat her.

Informed of Mia's death at about 6 a.m. one day, YPI's
workshop team got to work. In the absence of telephone contact, a
volunteer left for Karawang to tell Mia's family of her death.
Other volunteers booked an ambulance at Cipto Mangunkusumo
Hospital because the rental was much lower than that of a private
hospital. Ibu Upi, an employee of YPI's workshop, was contacted
and told to prepare to bathe Mia's corpse. She immediately went
to the market to buy a piece of unbleached cotton, cotton wool, a
plaited mat, gloves and other materials for preparing the body
for burial. She brought with her two elderly women, her neighbors
in Kebon Baru, South Jakarta, in the neighborhood of YPI's
workshop, to the hospital.

The hospital turned out to be unprepared for the bathing of
the corpse of someone who died of HIV/AIDS. It said it did not
have a room designated for the bathing. The hospital management
argued that it could not allow Mia's body to be bathed on the
premises because it would take extra work to sterilize the site.
"The place must be specially sterilized which will be costly,"
argued one head nurse.

After tough negotiations, the hospital management finally
relented and allowed the use of a room in the rear part of the
hospital. But the management did not want to be involved. No
nurse would lend a hand when Mia's corpse was to be moved from
the hospital room where she had been treated earlier to the
makeshift bathing room. The hospital management even refused to
lend a gurney to transport the corpse.

"Just use the equipment of the ambulance from Cipto
Mangunkusumo Hospital," the nurses said.

To save time, the YPI volunteers complied and immediately took
the stretcher from the ambulance to carry the body. Mia's mother
sobbed hysterically as the corpse of her daughter was taken to
the bathing room.

In front of the room, Ibu Upi and the two elderly women
accompanying her sat on the plaited mat, sewing the piece of
unbleached cotton. When everything was ready, they came into the
room and bathed Mia's body. Ibu Upi and her friends previously
bathed the body of someone else who died of HIV/AIDS. Ibu Upi
works as a cook at the YPI workshop and is close to many people
with HIV/AIDS.

She shows great empathy and kindness to the people. When she
heard that the hospital would not allow Mia's corpse to be bathed
in the hospital compound, she said firmly, "OK, if that is the
case, just take her body to my house. It's all right. I can bathe
the corpse there". The volunteers were deeply touched by Ibu
Upi's sincerity.

After the body was bathed, some volunteers lifted it and
placed it on the bleached cotton spread on the floor. In the
meantime, several other volunteers played with Pia to keep her
occupied.

After being neatly wrapped, the body was carried to the
ambulance. Mia's mother and a volunteer sat beside the driver. It
took 2.5 hours to reach Mia's village. The body was not placed on
a bier and it moved several times during the journey. "Well, we
had to keep holding the corpse," said two volunteers. Another car
taking other volunteers escorted the ambulance. Pia, who was in
this car, played with the volunteers and seemed unaware of what
was going on.

Village

At noon they arrived in Mia's home village. Many of Mia's
neighbors had gathered, waiting for the arrival of the corpse.
But most of them stayed outside, keeping a distance from Mia's
house. When the corpse was taken out of the ambulance, none of
the neighbors came forward to help. YPI village station
volunteers lent a hand. Mia's mother began crying hysterically
again.

Mia's body was laid in the living room. Two local religious
elders led the midday prayer and a special prayer for the corpse.
Not many locals took part. Then the body was carried, without a
bier, to a graveyard, about 200 meters away. A few more locals
gathered around the grave which was in a family plot. When Mia's
body was already interred, some locals threw clumps of earth. "To
drive away bad luck," one of them said.

They knew three years ago that Mia was infected with HIV/AIDS.
At first they were hostile to her; when they found out that Mia
was pregnant, they prohibited her from giving birth in the
village. Mia, helped by volunteers, gave birth to Pia at Cipto
Mangunkusumo Hospital. The volunteers took Mia home to show the
neighbors that Mia's baby appeared normal and could not infect
others HIV through regular social contact such as being held,
touched or kissed on the cheek.

To increase HIV/AIDS counseling activities and support for
people with HIV/AIDS, a YPI village station was set up in 1996 in
the area. The result was that the neighbors slowly came to accept
the presence of Mia and her baby. When Pia had her birthday, for
example, other children in the neighborhood came to celebrate it
with her.

Unfortunately, the stigma and ignorance remain strongly rooted
in the community. Of course, is not limited to villages; many
people, including health workers like those at the private
hospital, living in urban areas do not understand HIV/AIDS and
react with prejudice to people infected with the virus.

One of the religious elders recited a prayer for the dead body
on top of Mia's grave. Little Pia watched the burial procession
sadly even if she did not really know what was going on. Pia
played with her friends close to the grave of her mother.

At 2 p.m. the volunteers returned to Jakarta. They took with
them some coconuts given by Mia's mother "for fast-breaking at
home". Pia waved them goodbye.

In the car the volunteers felt a little relieved. Yet, there
was something else to attend to; payment of the loans used to pay
for Mia's hospital treatment which the woman's family cannot
afford to pay.

The volunteers would appreciate assistance in helping repay
the loans and also for contributions toward Pia's living
expenses. The volunteers only hope that Pia's life will be filled
with happiness. Her grandparents, little friends and neighbors
are keeping her company after her mother's death.

Interested donors can contact the YPI workshop at 837-95480.

The writer is program manager of Pelita Ilmu Foundation.