Imagine burns covering 75% of your body. Curled up at home, away from the light, curtains drawn. You are ashamed of your own reflection, spurned by family and in agony from huge lesions that cover you. That is how scores of forgotten burns victims while away their days. Most of them could easily have died in the acid attacks, acts of bravery or domestic accidents that left them scarred for life, but they do not feel very lucky to be alive. For 30 of city’s burns victims that changed on Saturday; for one day they had their life back.
The Landmark Self-Expression and Leadership Programme is designed to create projects which make a profound difference in people’s lives. An appropriate example of this was demonstrated by Shirin Juwaley, a participant in the programme, whose project provided a joyful day out for 30 burn patients of Sion Hopsital on 22nd December at a Virar resort. It was a special day, away from stares and questioning eyes around scars and contracted limbs. It was a time to shed inhibitions and get back to a life they had altered because of their burn injury. Watching the swimming pool water run down their bodies felt as if it was slowly helping them discard their self-consciousness replacing it with shrieks of joy and laughter. For the many burn survivours, mainly women, who had attempted suicide by dousing kerosene on themselves, it was day to leave behind the guilt and smile without remorse. Meena, 56 shared that ‘ today for the first time, I did not think of my home, my children, I lived for myself”. Nilesha, 22 shared that ‘ After being burnt it was the first time I have had such an opportunity and I am so grateful to have this special day”. Chanda, 41 shared “I have never been out on a picnic, this is my first time and I will always remember this day.”
Sion hospital – along with burns campaigners Shirin Juwaley and Lalit Jham – organised this first day trip of its kind for burns victims in India. Thirty rehabilitated patients from the hospital set off at dawn to a Virar resort where they could relax, swim and express themselves in ways they had not since they got scarred. It was mid-day and the music by the pool had just started up. A stampede to the water disco was followed by shrieks of delight that could have been heard in Colaba. The simple act of jumping in the pool and feeling water run over their bodies – something most of them had not done for years – brought happiness. The release of frustration and emotion was tangible. “I pray that every human should be given a day like this,” said 30-year-old Poornima Bhonjale, who set herself on fire in 2002 after her alcoholic husband threw out their baby out of the house. “Today has shown me that if you have a life, it is worth living.” The major problem for burns victims is acceptance. “There is such ignorance and insensitivity towards burns victims in India,” said Juwaley, a burns victim herself. “People are scared of us, they are repulsed, they think it is a contagious disease. This harms the victims’ self-image to the extent that they don’t feel comfortable stepping outside.” The support group at Sion hospital offers both emotional and material support to victims. “We rehabilitate victims by giving them jobs at the hospital, financial help and by counselling them and their families,” said Tara Verma, the hospital’s community development officer. “This trip will help build confidence and begin to remove fears about acceptance by society .”
Feels great to be out
Malan Sonavana, 35, Dharavi resident: Four years ago, Sonavana’s pressure stove exploded in her face – the most common form of burn. After the accident, her daughter – who was seven at the time – was so horrified by the sight of her mother’s scarred face and body that she would not look at her and refused to eat food she had touched. “I felt very bad. Not only did I have the trauma of the burn, but also the trauma of my daughter’s reaction” she said. “I never leave the house because of my scars, so it feels great to be out.”
I am no longer afraid
Nilisha Pailkar, 22, Navi Mumbai resident: Last year, Pailkar ran away from home to marry the man she had fallen in love with. But four months later, she was so depressed that she doused herself in kerosene and set herself on fire.
“At first, I would never leave home. People stare and think I look grotesque, but thanks to Sion hospital my confidence has grown. I am no longer afraid and now I am determined to make my parents proud of me again.”
I have to live for my children
Santosh Kamble, 38, Navi Mumbai resident: Kamble’s wife thought he was having an extramarital affair. She constantly threatened him with suicide but he ignored her. One day in 2000 – while he was outside – she set herself ablaze with petrol. In an effort to save her, he was severely burnt. She did not survive. “I know I am stared at and I feel self-conscious. It makes me depressed but I have to live on for my three children.”
I must keep going
Shaguna Kashif, 29, Diva resident: When it became clear that Kashif was infertile, her mother-in-law threw kerosene over her and set her alight. Her husband stood by and watched. Five years on, she still does not go out because of her scars but finds hope in caring for her young nephew. “Looking after him gives me the will to live and keep going. I have a life now: I survived and I must keep going.”