‘Unlikely’ friend of India’s lepers
UNIBAI was discarded outside an Indian hospital, maggots oozing from horrific wounds, her body riddled with leprosy and, though barely conscious, she was raped.Nurses paid a rickshaw driver to dump her in the streets, and she was never seen again. After being diagnosed with leprosy which destroyed the nerve endings in her hands, Chindabai was kicked out of her home on to the streets.
Her brother blinded her with his fingers because she wouldn’t give him her small patch of land, and she burnt her hands cooking meals for her and her dog, because she could neither see or feel the heat searing her skin.
Mina’s mute mother lived on the street with leprosy, and had two children possibly as a result of being raped. Mina was subjected to multiple gang rapes where she was forced to drink alcohol, making her an alcoholic.
She had numerous children as a result and suffered severe schizophrenia after her traumas, as well as being HIV positive. Doctors said it wasn’t worth treating her as maggots had crawled into her ears and were possibly burrowing through her brain.
All three women were saved by a Weardale woman who claims she is the worst person for the job, and her Indian companion, a former leprosy sufferer turned charity worker.
Leah Pattison from Frosterley said: “My family all agrees that out of the three children, I was the least likely to get into charity work, especially in a place like India. I work in very dangerous areas, where just looking at someone the wrong way can get you stabbed, and women are second class citizens, but I’m gobby, short tempered and used to be a terrible hypochondriac.
“We got chased from a slum after I spoke out about the way a woman was being treated, and I have chased drivers who have been rude to me on my moped and made them apologise. I often wake up and wonder why I am here. There is nothing special about me, I’m not on a spiritual mission or anything like that.
“Anyone who had been the position I was when I first visited a leper colony could have done exactly what I did.”
Leah first visited India in 1995, but it was never her intention to set-up a charity to help the women she was so curious about.
Leah said: “It was just supposed to be a different experience. I wanted to cure my curiosity about leprosy and sufferers, before coming home and becoming a world famous artist. But I became seductively drawn into colony life, and when I returned to Weardale I wanted to be back in India.
“It was when I met Usha Patil that my life really changed, she was my inspiration. While I was helping because of a sense of great injustice and anger for the women in India, Usha was interested in helping people with leprosy after her own experiences and the fact she had so much support from her family.” Usha was just 10 years old when she was struck down with leprosy and was sent to a colony, which many sufferers never escape from.
Unusually, Usha received support from her family and after five years of on-off treatment overcame the disease, although her face was left very badly scarred after several allergic reactions to the medication, a usual side-affect of leprosy treatment.
Leah, who met Usha while teaching her English, said: “Usha was remarkable. Most people who move to a leper colony will spend the rest of their lives there, but Usha always said she wanted to get out. Her face had lost all elasticity after several bouts of intense nerve swelling from the drugs she was taking.
“Eventually, after much bullying and fighting she arranged to have plastic surgery, and she was the first woman to have a face-lift after leprosy.” Leah spent more than a year and a half living with Usha’s family as the two developed their idea for START, a charity which helps leprosy sufferers, specifically women.
Leah said: “Both Usha’s family and mine have got totally involved in our work. Usha comes from a simple background and is one of ten children, three of whom died. “Her parents married when they were 12 and it was a tale of country boy meeting city girl. “Her father was a goatherd until he got a job at the railway while her mother was a road labourer.
“I grew up in Weardale and was used to having my own time and space whenever I wanted, but at Usha’s we all slept in a line along the floor. We had to go and collect water from the village pump, a totally different experience to growing up in this country.”
Usha and Leah formed the START charity, which saw them walking through slums and dangerous neighbourhoods where women were regularly raped, trying to find sufferers from leprosy, but their attempts to help the stricken were often met with resistance from those they were trying to help.
Leah said: “Such is the stigma attached to leprosy that many women felt ashamed to have leprosy, and even worse they felt they deserved to be ill. “If we tried to help they felt we were interfering with the work of God, and that is was their fate to have the disease. Women are poorly treated in India anyway, but as soon as they have leprosy families kick them out of the street. It is a source of great shame for a family if someone has leprosy, and many don’t just want to kick-out sufferers but also to take everything away from them.
“If an old lady had the disease, even if she has been cured for years, her grand children could still struggle to get married because of her history.”
The START centre in Nagpur provides a haven for women with the disease, and helps those that have been cured moved on.
Leah and Usha are now planning a hospital and hospice, and after 22 months of dealing with corrupt officials have now got the license they need. Leah said: “India is a very corrupt place and officers usually expect bribes. We decided early on that we wouldn’t resort to that, and it has been a long, slog but finally we are in a position to start work on the hospital and hospice.
Women deserve a place where they can die with dignity, surrounded by people that care about them. Our whole project is really giving leprosy sufferers the respect they deserve.” Leah and Usha have also formed Women In Need which helps Indian women no matter what their problem, but in a country rife with rape, HIV is becoming their number one problem.
Leah said: “India is a country of contrast, and though people are very shy about sex a lot of men visit brothels and use prostitutes. Lorry drivers believe that they need to release the heat from sitting on top of an engine all day by having sex, and so spread HIV.
“There are also many women with mental illnesses caused by the horrific traumas they have been subjected to. The betrayal of being ostracised from your family often affects intelligent successful women the most so they are even more susceptible to suffering mental health issues. We can help them, we just need £5 a month to pay for psychiatric treatment and £8 a month to feed a woman every day for a month with proper food.
“People are essentially the same, and even though there are many cultural differences, Indians still laugh and cry at the same things as us in Wear Valley.”
For more information on START, visit www.start-leprosy.org, although a new website is in the pipeline, or call 01388 528407. To see a film of Leah’s work made by her brother visit www.youtube.com/markashleyfilms
Leah is home for two months before returning to India. Leah said: “It’s nice to be home and just recharge our batteries. But I know we’ll go back with fresh ideas because there is always plenty for us to do. Curing leprosy is easy, it’s the aftercare that is difficult.” LEPROSY FACTS n Leprosy is a chronic disease caused by a bacillus germ, Mycobacterium leprae, which belongs to the same group as tuberculosis. n Another name for leprosy is Hansen’s disease, named for Norwegian doctor Armauer Hansen who was the first to view the germ under a microscope in 1873. n Leprosy can be cured with multi-drug therapy and treatment takes from six months to two years, depending on the severity of the case. n The first signs of leprosy are often pale patches which appear on the skin and/or loss of sensation on the hands and feet. n Leprosy is not highly contagious, and experts believe that it is transmitted primarily when people cough or sneeze, thus discharging bacilli on droplets or dust particles that other individuals then inhale. n Leprosy doesn’t affect the deeper organs and tissues of the body to any extent. Essentially it is a disease of the skin and superficial nerves. Skin lesions are easy to observe by health workers and are associated with definite sensory loss. n Most people, approximately 95 per cent of us, have a natural immunity to leprosy. n The leprosy germ attacks the nerves, especially those going to the legs, arms and face, which causes loss of sensation and also weakness and paralysis of muscle. n Leprosy can be a crippling disease if it is not treated early. By some estimates, a quarter to a third of all patients with leprosy will become disabled. Mortality is not associated with the disease since the disease is rarely an immediate cause of death. n Leprosy is one of the world’s leading causes of preventable blindness. n Leprosy remains a public health problem in more than a dozen countries situated mainly in the inter-tropical belt of the world. n Approximately 2-3 million people need ongoing care for leprosy-related disabilities. n India has the highest prevalence of leprosy in the world, followed by Brazil, Nigeria, Myanmar, and Indonesia.
