You might ask how? It’s simple, really. We stare. We make terrified – if not disgusted – faces. We ask pointed questions and pass crude remarks. We snigger behind their backs. We tell our children to look away. When they board the same bus we happen to be traveling in, we shift uncomfortably as if a mere brush would have us up in flames.[break]
“I got on a microbus at Satdobato to go to Jawalakhel, and when I took my seat, the person behind the driver’s seat, who until a moment ago had been happily chatting away with him, took one look at my face and neck and went to the back of the bus,” says Sonia KC*, adding that when the driver asked him why he had left so abruptly, he shouted for all to hear that he was scared of a horrifying looking girl sitting up front. His uncouthness was nothing new. She had learnt to live with such gruff words.
Sonia is a burn survivor. The upper half of her body, including the neck region and lower half of her face, bears evidence of the same. She suffered 45% burns when following a bout of severe depression she tried to commit suicide.
This young lady in her late 20s is always covered from head to toe. Even during hot summer days, she sports a jacket, face mask and a thick scarf. The one day she thought of being a little bold and leaving her mask behind, she had to bear such insensitivity that the thought of being “brave” has never even crossed her mind thereafter.
The first and foremost priority of every burn survivor revolves around hiding or camouflaging their disfiguring and disabling scars. But even despite all the (un)necessary precautions – heavy layers of clothing and almost always keeping their head bowed – stepping out in public is an ordeal.
Bir Bahadur Lama, psychological counselor who has been working with burn victims since 2000, says that burn survivors are already deeply troubled, and the society fuels their insecurities by never really fully accepting them.
“After they are discharged, all their efforts are mostly centered on keeping themselves veiled, rather than getting better. They have to do so because people exhibit a lot of uncalled-for curiosity about their past and then use that information against them by being mean,” says Lama, adding that this discrimination is regressive and detrimental to the community as a whole.
Burn injuries are the second most common of injuries in Nepal. They are mostly accidental and sometimes even homicidal and suicidal. Such cases are frequently related to dowry or abuse – either physical or mental and at times even both. Sometimes girls can’t handle the constant nagging and mistreatment and set themselves alight; but mostly, it is the in-laws who are the main perpetrators of the act.
Life as burn survivors is extremely difficult as they are stigmatized and shunned by the society solely due to their appearance. Jobs are difficult to get with potential employers taking one look at them and not bothering to interview them any further. In covert and overt ways, deliberately or subconsciously, they are systemically, culturally and personally denied easy access to mainstream life and resources that we take for granted.
“I’ve decided to become a seamstress and recently enrolled in a training session,” says Laxmi Chauhan, 20, affectionately known as Gudiya at Burn Violence Survivors-Nepal (BVS-Nepal), adding that it’s become clear to her that she has to find an independent source of livelihood because no one shows even a remote interest in hiring her for any kind of work.
Gudiya has had a traumatic past. She was married off at 14. Her husband and in-laws mistreated her, and things got worse when she couldn’t bear a child. Their cruelty escalated after some buffaloes the family had been rearing for a while died suddenly. Her in-laws blamed it on her, saying she brought had along bad luck.
Her sister-in-law took a step further in punishing her. She set Gudiya on fire. Miraculously, she survived even after suffering from extensive burns, mainly on the chest region. But life would never be the same for this young girl who could not, for quite a long time long time, bring herself to even look at her own face.
“She was afraid to look at herself in the mirror. The few times she did so, she would become sad and her eyes would always well up,” says Rumi Rajbhandari, Program Coordinator at BVS-Nepal who works in close proximity with burn survivors coordinating their appointments, surgeries, counseling and rehabilitation.
“Though Gudiya and most of the survivors have definitely come a long way, they are nowhere close to leading a normal life,” says Rajbhandari, explaining that for the survivors, every little task requires a lot of planning and consideration.
Even in an era of short-lived interests that are embarked on passionately and discarded as quickly because we take life for granted, the smallest of decisions can be a life-altering one for burn survivors. The smallest of choices – going out to the corner shop for milk, buying a scarf that’s not wide enough but has pretty patterns, or taking up a course – needs to be given a lot of thought.
Now like Sonia, Gudiya too travels fully covered but still manages to elicit a few glares and spiteful comments every now and then. It is also extremely tough for her to bear the summer heat that way since her wounds, even after two years of the incident, tend to itch and burn and she feels like literally peeling her skin off. In such a scenario, she has repeatedly found herself wistfully looking at girls wearing short-sleeved dresses.
“If I don’t cover my scars, I know everybody will stare and comment. So I choose to bear the heat rather than hear soul-scathing comments,” says Gudiya, and Sonia admits to doing the same. Rajbhandari adds that every burn victim leads a sort of hidden life, and unless and until the society learns to accept them and maybe even ignore the eye-catching scars, the victims will continue to lead confined, restricted and dreadful lives.
The reason why burn victims tend to wear a chip on their collective shoulder which is in parts defensive and offensive while choosing to remain wary and sequestered is because of one reason and one reason only – the society’s subtle, at the same time blatant, refusal to accept them as a part of the community. We seem to have forgotten that these girls have the right to lead dignified lives as much as anybody else. It is us who have played a huge role in creating this chasm and so we bear the responsibility to bridge it.
Beating the odds
Clad in a dark blue jeans and a stripped t-shirt, she looks, from afar, like just any other girl. As she draws closer, however, you notice the full sleeved sweater she has on and the scarf around her neck that also masks the lower half of her face.Sanju Rawat* is covered from head to toe even during a sweltering hot summer afternoon to hide her arms and chest swathed in terrible scars with folds of flesh.
She was just 16 years old when she got married to a man she thought she would spend the rest of her life with. Her in-laws doted on her. She felt lucky, blessed even. By the time she turned 18, she was pregnant with his child. Life seemed good. But fate had other plans.
“My husband turned out to be a substance abuser. He regularly pawned my jewelry to fund his habit and I happened to find a stash of drugs one day,” says Sanju, who is now 31 years old, adding that she promptly flushed it down the toilet.
Consumed by rage, he shoved his seven-month pregnant wife with such force that she hit against the sharp armrest of their bedroom sofa. Her cry made it obvious that she was in pain, and assuming that he had probably, in the process, killed his own child, her husband made a desperate attempt to make it look like an accident.
“He rushed to the kitchen, grabbed a jar of kerosene which he poured over me without a moment’s hesitation and set me on fire. He then proceeded to call out for help while trying to put out the fire he himself had set in the first place,” she says, shaking her head at the incredulousness of it all even after 13 years of the incident.
Sanju was rushed to the hospital immediately and she survived but she lost her baby, suffered from severe burns – more than 50% – and her seemingly good life came to an abrupt end all in a day. After months at the hospital, she was discharged. She left her husband but didn’t lodge a criminal case against him as she was, to put it quite simply, scared of the man whom she once thought she knew inside out.
“I had never even in my wildest dreams thought he was capable of doing what he did to me,” she says, admitting that she still gets goose bumps when she thinks of him, which happily isn’t very often.
Most burn victims’ eyes well up with tears, their voices break and they still, to a certain extent, seem haunted by what happened in their lives. But Sanju narrates her story as just that – a story. Her voice remains steady and she shows no signs of being harrowed by her past. She remarried, had two sons from her second husband and now makes a living as an artist who specializes in face painting, nail art and henna tattooing.
“I want to become a tattoo artist. I’m thinking of getting trained. I also want to pursue a course to work as a makeup artist in the future,” says Sanju, the words flowing without any inhibitions. Her eyes gleam when she smiles and her dyed blond hair and numerous chunky rings on her slim fingers showcase her love for fashion trends. She’s a true survivor who has managed to come out of the trauma and take life by the lapels once more.
The only thing that continues to upset her is the society’s attitude towards her. She makes it a point to not leave an inch of flesh exposed when she heads out. But even then, people look at her oddly. “I guess it’s strange to see a person dressed for winter with full sleeved jackets and scarves when the weather is so hot,” she says, a sad smile playing on her lips.
Despite having a good academic background, getting a job proved next to impossible. People peer at her face all the time, try to get a closer look at her scars and then go out of their way to pass snide remarks once their curiosity is satisfied.
Sanju remembers one incident that sent her on the verge of depression. She was walking home with a tiny puppy wrapped in her arms. A group of children approached her and started coddling the cute animal. After a while, one of the children – old enough to understand cruelty – offhandedly remarked that he couldn’t believe someone carrying such a beautiful creature could be so terrifying.
This example of how utterly rude and insensitive people can be is not just a one-off case. There have been many such instances, but what Sanju hates the most is sympathy. “I get really angry when and if people say they are sad for me,” she says. Sanju echoes the voice of other burn survivors when she says basic respect is what she wants, not compassion or kindness because of what happened to her and she most definitely does not want pity.
Bridging the gap
Burn Violence Survivors-Nepal (BVS-Nepal) was established in 2008 with the sole purpose of providing the best possible burn care and treatment. Since its conception, the organization has helped more than 350 burn victims. Besides providing medical care, BVS-Nepal also assists the victims in legal matters, imparts vocational training and immediate to long-term counseling. Currently, BVS-Nepal is the only organization working exclusively with burn victims.
Cilla Khatry met up with Rumi Rajbhandari, Program Coordinator at BVS-Nepal to know more about the challenges they meet in the course of their work.
What services does BVS-Nepal provide to burn victims?
When we started, our activities were limited to providing medical help to the victims, including providing them proper nutritional care and physiotherapy. Now just a few years since its conception, we’ve managed to incorporate a lot of other activities in our agenda. We run awareness programs, stress management training for health authorities dealing with burn cases, and counseling sessions for victims as well as their families. We’ve conducted street plays and also made a documentary featuring some of the well known celebrities around town in a bid to raise awareness about this issue. BVS-Nepal also helps victims in legal advocacy. Most victims don’t know about their rights, and we help them in their fight for justice as well. Our goal was and is to provide the best possible care to the victims of burn injuries but now we also focus on rehabilitation and help them get over the trauma, physically as well as mentally.
What are some of the difficulties you face while working with burn victims?
Burn violence victims are extremely sensitive cases and it’s immensely difficult to make them speak up. They are very hesitant to talk and we have to work extra hard to break that barrier. It’s also equally difficult to convince the family members to let us take care of the victim. Many feel that since we’re an NGO, we’ll take care of them for a while and then send them back. We have to persuade them and that’s a Herculean task in itself. Many victims are from rural areas of the country and it’s quite an undertaking to bring them to Kathmandu for further treatment. Also, lack of support from local NGOs and other authorities we have to deal with create roadblocks time and again. Another major difficulty lies in the rehabilitation of the victims. It’s a tough job to make them come out of their shells and embrace the society once again.
Has the government been supportive?
Unfortunately, I must say no. We tried to get the government involved but failed even after repeated attempts. They seem to be least interested mainly because we’re an NGO and they assume we have a lot of funds at our disposal. What they don’t realize is that the work we do requires a lot of money. We fund the victims’ medical expenses. Surgeries are very expensive. Skin grafts alone can cost a fortune. As of now, we’re dependent on a limited budget provided by some UK-based donors and some local donors. Government officials cite lack of budget as the main reason why they can’t support us. Burn violence is an issue that needs to be given priority, but sadly, the government seems to be least bothered. Even if the government can’t allocate funds directly, it could help us in raising awareness. The government’s outreach is massive. They can reach everywhere within the nation whereas we’re a small organization and it’s difficult for us to do so. We are still hopeful that they will pay attention to this grave issue soon.
On a personal note, how has your experience been so far, and what are your hopes?
To be very honest, initially when I started working for BVS-Nepal, I was emotionally distraught. A complete wreck, you could say. I found it hard to talk to the victims because I feared coming across as insensitive. I couldn’t even eat properly after seeing the state of some girls. But as I met more and more victims, I started becoming stronger. The job I had set out for required willpower and commitment, and I gave it my all. I have now become emotionally attached to many of the victims and will do whatever it takes to ensure they come out of the trauma and are able to lead better lives. I’m very pleased to say that many of the victims are now stronger and much more confident. Many still have a long way to go but I’m positive that these girls will carve out good lives for themselves. My only hope and wish is that the society supports them and that they won’t have to face discrimination based on their appearance.
(*some names have been changed)
cillakhatry@gmail.com
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