In a country where HIV and AIDS patients meet a fate worse than death -- socially ostracised and denied basic human rights -- Seema’s story comes as a breath of fresh air, hopefully giving hope to thousands of others like her, heart wrenching as her tale is. Seema (name changed) lost both her parents to AIDS when she was just two. Her elder siblings, a sister and a brother, escaped unscathed, but Seema caught the dreaded virus from her parents.
But it was not the Anti Retroviral Therapy (ART) that dragged her down, but the rejection and humiliation she faced from her own teachers and classmates who once loved her, after they discovered that she was HIV positive.
But here’s the sunshine story, the silver living in the cloud: Seema refused to give up. Two years after discrimination in the municipal school in Dadar, where she studied, forced her to drop out of school when she was in Class VIII, Seema underwent several counselling sessions. She received tremendous help not only from her aunt and grandparents who take care of her, but from social workers and doctors at Sion hospital who made sure she was confident enough to face the world again and continue with her education.
Today she is back, having changed her school and set to tackle her first board exams in less than two years time. “I used to dread going to school. I had been studying there since I was five. But suddenly everything changed and snide remarks about my illness began when I was in Class VII, two years ago,” she recalled, speaking to SUNDAY MiD DAY on the eve of World AIDS Day.
The tragic turn of events happened when her older cousin, who studied in the same school, revealed to her classmates that Seema was undergoing treatment for HIV for the last four years at the Sion hospital. “While my aunt and grandparents who I live with have always been supportive and encouraging, after my secret was revealed to my peers in school, my class teacher made me sit alone on the last bench. Everyone refused to sit next to me because of my disease and I was forbidden from using the drinking water facilities in the school as well,” recalled Seema.
Her ordeal did not end there. But even in these trying circumstances, Seema found her first ray of hope -- a lone friend who was not afraid of sitting next to her, until the other students warned her against interacting with Seema. “I felt like everyone in my school hated me. My teacher once told me that I was lucky to get admission despite having HIV. I wasn’t allowed to go outside my classroom and play with other students. During lunch break, everyone refused to share food with me,” she said.
Luckily doctors at the Sion Hospital realised she was suffering from depression when she refused to go back to school in 2011. While she was undergoing ART at the hospital, she started undergoing counselling sessions in the Child Palliative Care (CPC) unit of the hospital in the HIV care centre.
“She was deeply traumatised. Our social workers intervened and approached the school principal. Following that, an AIDS sensitisation programme was held in the same school by the Maharashtra District AIDS Control Society (MDACS),” said Dr Sana Shaikh, a medical officer at the hospital’s ART centre.
Light at the end of the tunnel
But persistence finally paid off. “After several counselling sessions, she has finally joined a night school next to her home in Wadala. Physically too she is responding well to the treatment,” said Dr Shaikh. A social worker from the hospital who spoke to SMD narrated how even educated people, including teachers, still harbour serious misconceptions about HIV and AIDS and think one can get the virus by merely touching someone. “Even after we organised a sensitisation programme for the students, she was subjected to the same behaviour and denied food and water and barred from taking part in extra curricular activities,” he added. But finally things seem to be improving. Seema is now studying in the ninth standard in a night school and she says she is now taking each day as it comes and concentrating on her studies. So what does she want to be when she grows up? Seema laughs. “I have decided I want to study science after my board exams. But I haven’t decided which profession I want to pursue. I take life one day at a time.”
The number game
around 2,180 children are registered with Sion Hospital’s Paediatric Centre of Excellence HIV Centre. They come in every month for Antiretroviral Therapy (ART).
>> India reports around 1.16 lakh new HIV cases every year among adults and around 14,500 new cases among children.
>> Around 1.48 lakh people died of AIDS in 2011 across India and HIV infected children account for 7 per cent of the deaths.
>> Maharashtra has 1,11,663 HIV patients registered in the different centres, the highest among all Indian states
(Source : National Aids Control Organisation)