Dissolving the burns

I first met Shirin Juwaley in March 2001. She looked me straight in the eye and said with an unflinching, upfront approach how many people shrank from seeing her or gaped in horror because of her severely disfigured face. She had small plugs to keep her nostrils open because her nose had almost dissolved.

A victim of domestic violence, she was burnt by acid thrown on her face by her husband in 1998. He was angry that she had asked for a divorce. A period of intense pain and isolation followed until Shirin decided to chuck aside the burqa in which she hid her disfigured face and boldly stepped out in public. Back then, she told me, she was grateful that her eyes were saved, so that she could continue to look upon and enjoy this beautiful world.

Today, ten years on, she shares her gift - different ways of seeing. She challenges our ways of how we view people, our societal assumptions of what is normal or what constitutes beauty. She thereby attempts to change perceptions of how we view disfigurement. The Palash Foundation, which she formed with the active help of the Department of Social Work, Sion Hospital and Department of Social Work, Kasturba Hospital, addresses the need for psycho-social rehabilitation and livelihood needs of people with disfigurements. In a unique acknowledgment of giving space to celebrate differences Shirin has been chosen as brand ambassador for Mad-o-Wot, a beauty salon run by Sapna Bhavnani.

The foundation aspires to create an inclusive society that recognizes and protects the rights of all those who may be disfigured or quite simply those who are visually different.

The challenge to create an inclusive society is not just restricted to burn victims but to anyone who is perceived as having an altered physical appearance. It includes those who have been in an accident, those who have skin deformations or, those who suffer from altered pigmentation like leucoderma. Responses from people towards the disfigured can range from stares, offensive remarks to blank looks and an outright refusal to interact.

Shirin, who acquired a Masters degree in Development and Human Rights, from Swansea University, United Kingdom in 2008, says her ideas on disfigurement and normative beauty were very much influenced by Global Changing Faces, an organisation founded by a burns survivor. "Unfortunately in India we have a strong victim-oriented culture," she says. "Our mythology, media, Bollywood, fairy tales and cultural idioms associate physical disfigurement with bad or evil. Shakuni Mama in the Mahabharata is crippled, the villain in a movie will be shown as having a scar on his face and an Om Puri will never be given the role of a conventional hero. All positive traits are associated with someone who is fair and good-looking."

She adds, "In public spaces people tend to want to assist you but they refuse to talk, should you try and strike up a conversation. It is probably a desire to feel good about offering help but to shun social interactions. There is a kind of stigmatisation of anything that is scarred. When I used to wear a burqa and travel my face was covered but I could see people staring at my hands which also have scars."

One way Shirin confronts these societal attitudes is through awareness programmes and presentations on normative beauty in various colleges of Mumbai. She presents pictures that challenges stereotypes and poses the question of what constitutes normality. Can dwarves, those who have leucoderma, those who bear scars be considered normal?

"The general assumption of abnormal is whatever is not with the majority. And so we have social exclusion. We try to reinforce the idea that someone who is visually different should not be shunned or feared." She also demonstrates in her presentation how one's world is dominated by a person's physical attributes so that labels like "Kali, Moti, Carrom Board, Chashmish, Tingu, Bechari, Down Market and even Oh God! abound."

As part of its efforts to boost self esteem and confidence among burn victims Palash conducts workshops to address issues of body images and organizes day outings to locations that are perceived as hostile by the disfigured. Recently, in an event aimed at dispelling social prejudices and to celebrate differences and acknowledge diversity in body shape, form and colour, Palash Foundation and Mad-o-Wot organized an event "Tweet Up Night" where all those who have faced challenges in fitting in interacted with a group of visually different people.

For its annual day function burn victims from Sion Hospital and their caregivers were taken to a resort where they were given spaces to feel free and where they were not restricted by clothing to hide their scars. Palash also helps to ease the huge socio-economic burden that burn victims and their caregivers face for months and years on end.

Explains Shirin, "Sometimes caregivers are scared because they feel they might hurt the victim and desist from holding the hand or touching them. I try and provide the vicarious support because I too underwent the same ordeal. We have a support group for caregivers too because so much of time and finances go in providing care for victims, who can be helpless for months because of contractures by scar tissue which may make it difficult for them to move the affected limb or part of the body."

But most of all Palash helps them to move on and celebrate life just as Shirin has done. After protracted surgery she now has a nose and a smile that is as incandescent as Palash, the visually striking flower after which she has named the organization.