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.