In a world where people are judged by the way they look, acid attack survivor Shirin Juwaley is helping those whose faces and bodies have been scarred beyond recognition.
Attacked by her disgruntled ex-husband with acid in May 1998, 37-year-old Juwaley had to undergo 16 surgeries in India and abroad. "I received third degree burns on my face, right hand and chest. My features were destroyed. It was difficult for my close friends to recognise me. My eyelids had shortened, and I could not close my eyes. This made it very difficult for me to sleep," she recalled.
Although the battle so far has been immeasurably tough, Juwaley has somehow found it in herself to take a stand through her newly formed NGO Palash Foundation to address the issue of social acceptance for the "visually different". "Burn is not considered a social issue. On a policy level, disfigurement should be treated as a disability. I'm not looking for reservation. All we want is some preferences in a work environment so that we can be allowed to live with dignity," explained Juwaley, who herself found it difficult to find a job because of her scars.
"There are people who don't leave their homes for fear of being ridiculed by society. People used to cringe when they saw me. It took me four years to get out of my house. We need to educate society and caregivers on how to deal with this," said Juwaley, pointing out that there are over 9,000 burn surivivors in Mumbai alone.
According to Anil Tibrewala, consulting plastic surgeon, PD Hinduja Hospital, it's not just lay people that need an education, but also doctors who deal with burn victims. "Doctors need to be trained in sensitivity. There is no accountability if the doctor is rough or rude to patients. There is a huge influx of patients in government hospitals, no doubt, but that doesn't give some doctors the right to be unkind to people."
Authorities need to be sensitive to the fact that a burn victim, much like a rape victim, is deeply traumatised. According to Tara Verma, who heads the Department of Medical and Psychiatric Social Work at Sion Hospital, patients often don't tell the truth for fear of alienation from their families. "They keep on changing the story about how the incident happened. Ironically, most attack cases are registered as 'stove blasts'. In many cases, survivors know they have to go back home to the perpetrators of the attack," Verma said.
The overwhelming amount of paperwork soon after the attack can be daunting too, said Aubrey D'Mello, a lawyer who is programme director at the NGO, Majlis. "Survivors have no idea about what steps to take. They don't know their rights and the best approach to get justice, and that's where Majlis comes in."
Juwaley concurs with the fact that a less than fully informed approach can mar their chances at justice. "I had no one to help me. The statement I had given to the police at the hospital after acid was thrown in my face didn't work in my favour. I was in a lot of pain and don't recall the exact words I used," she admitted. This worked against her in the court.
D'Mello believes that the law should "put acid attacks at par with or higher than rape. Both work on the same premise. In one case, the face is targeted, in another, the vagina. It is a lifetime of societal trauma — even more than rape as it is more personal and inescapable."