Rato Dero outbreak: ‘It is not HIV but stigma that is killing us’
The residents of one village have demanded that families of HIV-positive children leave and set up their own town
RATO DERO:
Perhaps the most heartbreaking part of living with HIV, even more than facing the spectre of an early death, is being shunned into isolation for the years one has left.
For some families in one village near Rato Dero, where hundreds of children were infected with the incurable virus through no fault of their own, that prospect has come to pass. Still reeling from the ramifications of the tragedy, the parents of the HIV-infected children now find their own near and dear ones ganging up against them, demanding they leave their hometown or live with a social boycott.
The village of Subhani Khan Shar lies some six kilometres from the town of Rato Dero. It houses some 600 families in total, 30 of whom have been forced by the rest into a pariah status for the last six months. The reason? The 32 children who were infected with HIV during the recent Rato Dero outbreak belong to these families.
Despite many vigorous uninterrupted campaigns by health authorities, the parents of these HIV-positive children are being constantly pressured by the rest of the village into keeping them away from the remaining ‘healthy’ kids.
“All of us parents of HIV-positive children have been asked to leave the village and establish a separate one,” revealed a distraught Shahzado Khan Shar, a 32-year-old police constable. “Our own relatives even. They hate us,” he told The Express Tribune as he broke down in tears. “Where should we go with our innocent kids?”
Narrating the isolation he and others in his predicament were already facing, Shar said his own relatives have stopped even shaking his hand. “I am not HIV-positive but the other villagers believe I will infect them simply because my son now lives with this disease.”
“They throw away kitchen utensils which we use and our children are not allowed to play with the ‘healthy’ kids,” he said, heartbroken. “Even those who understand that they will not be infected by eating with us or by touch alone hate our children. Instead of receiving moral support, all we face is contempt.”
“Most of us, the parents of these kids, are facing mental, social and financial problems ever since the [Rato Dero] outbreak happened. But it is the social isolation that kills us. It is killing us daily,” Shar added. “We die every time we face the attitude which our fellow villagers have developed for us. We are devastated.”
Outside Subhani Khan Shar, the parents of HIV-positive children in other parts of Rato Dero are also being made to feel like outcasts. Some families have even moved out and migrated to smaller towns as a result of silent pressure.
“The other parents tell their kids not to play with my son,” lamented Dil Murad Ghanghro, who runs a small spare parts shop on Larkano Road just outside Rato Dero town. “My son is too young to understand social gap being created now,” he said as he kissed and embraced his two-and-a-half-year-old son, Abdul Samad.
“From Madeji and Shikarpur, my relatives in this situation are facing the same attitude. Our kids are innocent. It’s not their fault.”
But even as others around him turn against him and his family, Murad said his love for his child had grown exponentially. “I feel the hatred my son will have to face when he is old enough to understand. I cannot leave him,” he said as he wept.
Dr Imran Akbar Arbani who visits and interacts with the parents of HIV-positive children told The Express Tribune that such families were connecting with each other after being shunned by their own blood relatives. “I see a close relationship developing among the parents. They have same pain,” he elaborated.
Dr Arbani believes money could help reduce some of the stigma these children and their families face. “I think the government should insure these children. It could help create some acceptance for them,” he suggested.
According to the recent figures shared by the health department the number of infected persons has crossed the 1,200 mark, including 950 children.
“Yes, I understand the severity of the issue the parents have been facing in Rato Dero,” said Dr Sikandar Memon, the head of the Sindh AIDS Control Programme. “We have even involved clerics to convince people not to hate the children and others infected with the virus.”
Dr Memon said that the Sindh government was working on the community mobilisation. “But social taboos are stronger than our campaigns.” He said that through different organisations, his department has tried to connect the parents of these children with each other.
Rato Dero is hardly half-an-hour’s drive from Larkana city – a bastion of the ruling Pakistan Peoples Party (PPP). It is the constituency of PPP chairman Bilawal Bhutto, who has been elected on the National Assembly seat from the area. It is also the constituency of his aunt, MPA Faryal Talpur.
Perhaps the most heartbreaking part of living with HIV, even more than facing the spectre of an early death, is being shunned into isolation for the years one has left.
For some families in one village near Rato Dero, where hundreds of children were infected with the incurable virus through no fault of their own, that prospect has come to pass. Still reeling from the ramifications of the tragedy, the parents of the HIV-infected children now find their own near and dear ones ganging up against them, demanding they leave their hometown or live with a social boycott.
The village of Subhani Khan Shar lies some six kilometres from the town of Rato Dero. It houses some 600 families in total, 30 of whom have been forced by the rest into a pariah status for the last six months. The reason? The 32 children who were infected with HIV during the recent Rato Dero outbreak belong to these families.
Despite many vigorous uninterrupted campaigns by health authorities, the parents of these HIV-positive children are being constantly pressured by the rest of the village into keeping them away from the remaining ‘healthy’ kids.
“All of us parents of HIV-positive children have been asked to leave the village and establish a separate one,” revealed a distraught Shahzado Khan Shar, a 32-year-old police constable. “Our own relatives even. They hate us,” he told The Express Tribune as he broke down in tears. “Where should we go with our innocent kids?”
Narrating the isolation he and others in his predicament were already facing, Shar said his own relatives have stopped even shaking his hand. “I am not HIV-positive but the other villagers believe I will infect them simply because my son now lives with this disease.”
“They throw away kitchen utensils which we use and our children are not allowed to play with the ‘healthy’ kids,” he said, heartbroken. “Even those who understand that they will not be infected by eating with us or by touch alone hate our children. Instead of receiving moral support, all we face is contempt.”
“Most of us, the parents of these kids, are facing mental, social and financial problems ever since the [Rato Dero] outbreak happened. But it is the social isolation that kills us. It is killing us daily,” Shar added. “We die every time we face the attitude which our fellow villagers have developed for us. We are devastated.”
Outside Subhani Khan Shar, the parents of HIV-positive children in other parts of Rato Dero are also being made to feel like outcasts. Some families have even moved out and migrated to smaller towns as a result of silent pressure.
“The other parents tell their kids not to play with my son,” lamented Dil Murad Ghanghro, who runs a small spare parts shop on Larkano Road just outside Rato Dero town. “My son is too young to understand social gap being created now,” he said as he kissed and embraced his two-and-a-half-year-old son, Abdul Samad.
“From Madeji and Shikarpur, my relatives in this situation are facing the same attitude. Our kids are innocent. It’s not their fault.”
But even as others around him turn against him and his family, Murad said his love for his child had grown exponentially. “I feel the hatred my son will have to face when he is old enough to understand. I cannot leave him,” he said as he wept.
Dr Imran Akbar Arbani who visits and interacts with the parents of HIV-positive children told The Express Tribune that such families were connecting with each other after being shunned by their own blood relatives. “I see a close relationship developing among the parents. They have same pain,” he elaborated.
Dr Arbani believes money could help reduce some of the stigma these children and their families face. “I think the government should insure these children. It could help create some acceptance for them,” he suggested.
According to the recent figures shared by the health department the number of infected persons has crossed the 1,200 mark, including 950 children.
“Yes, I understand the severity of the issue the parents have been facing in Rato Dero,” said Dr Sikandar Memon, the head of the Sindh AIDS Control Programme. “We have even involved clerics to convince people not to hate the children and others infected with the virus.”
Dr Memon said that the Sindh government was working on the community mobilisation. “But social taboos are stronger than our campaigns.” He said that through different organisations, his department has tried to connect the parents of these children with each other.
Rato Dero is hardly half-an-hour’s drive from Larkana city – a bastion of the ruling Pakistan Peoples Party (PPP). It is the constituency of PPP chairman Bilawal Bhutto, who has been elected on the National Assembly seat from the area. It is also the constituency of his aunt, MPA Faryal Talpur.