In an exclusive interview with Suchitra Bajpai Chaudhary, Becky Douglas talks about her project to eradicate the stigma of leprosy and restore dignity to those afflicted in Chennai, India.
Meet Selvaraj. He was only 12 years old when he discovered small white patches on his elbows and chest. They were itchy and soon they turned numb. Before he had time to live his dreams, he had contracted leprosy. He was not only rejected by his own mother and other relatives, but also driven out of his village. Dealing with his disease and loneliness, Selvaraj wandered for many years, begging on streets.
A micro-loan from Rising Star Outreach changed his life. With the small amount, Selvaraj bought a goat and began to sell goat's milk. Soon his goat multiplied into a herd and today Selvaraj is a prosperous entrepreneur, bursting with energy, enthusiasm and hope. Selvaraj married another inmate at the leper colony he was living in. They have a beautiful daughter who studies at the school run by Rising Star Outreach – she speaks fluent English and is her parents'
pride.
After more than a decade, with money, renewed self-esteem and pride, Selvaraj decided to revisit the village of his childhood and meet his mother. The village welcomed him with open arms and the mother who had abandoned her teenaged son, hugged him tearfully.
Now meet Selam. A few years ago, 60-year-old Selam was a woman with a broken spirit. She came to the Rising Star Outreach Clinic with festering wounds on her legs, the infection threatening to affect her bones.
If that had happened, Selam's legs would have to be amputated. Terrified of the thought, she sobbed, not because she couldn't take that, but because her fear was that if she couldn't beg to make her ends meet, what would happen to her young grandson? Abandoned by her husband and family owing to her leprosy, the only person she could call her own was her grandson – another abandoned child left in the leper colony whom Selam had adopted.
Now with this little child as her responsibility, Selam looked forward to each day, the spirit of nurture having lit a lamp of hope in her.
Selam was fortunate to have reached the clinic in time. With proper care, the clinic helpers saved her legs.
The infection was arrested and her leprosy effectively treated. She accepted a micro-loan to buy a cow. Good fortune smiled on her and her cow was blessed with a calf.
Today, Selam has a thriving milk business and her grandson happily takes the cow and the calf for grazing. Hers is the
first home in her leper colony to have a coloured television set that occupies pride of place in her living room. Finally, meet Becky Douglas.
She was a beautiful young woman living in the US, and she had everything: a nine-bedroom home, nine children, a doting husband and her music. She was a solo violinist who performed on stage every month. She was living the perfect life, full of love, music and laughter.
So why would anyone living in such an idyllic setting travel thousands of kilometres across oceans to land in a slum colony of lepers, and hug these maimed and shunned people, clean festering wounds and build homes for their children?
It takes courage and compassion for anyone to actually will themselves out of a comfort zone and into an alien culture to deal head-on with one of the worst scourges of humanity, leprosy.
Becky Douglas, an American housewife and musician, did just that.
A daughter's wish
A devastating tragedy, the death of her oldest daughter Amber, gave Becky the courage to look at the other side of life. Amber died at the age of 25 in 2000. "She was such a beautiful child," recalls Becky, who admits that the strongest motivating force in her life is her children – six daughters and three sons, some of whom are adopted.
"Amber had been diagnosed with bipolar disorder a while before and had been in and out of mental hospitals. She had endured a lot, struggled a lot with her illness and finally she gave up.
"When we went to collect her belongings at her college, we realised that she had been regularly sending a portion of the money that we sent to her for her education to support
an orphan in the Belmont Orphanage, Chennai, India.
Amber was a wonderful person; she was very creative and talented and had a real tender spot for the underdog as she had been through so much herself. She just cared. As a tribute to her, we asked the people who came to the funeral to send money to that orphanage instead of bringing flowers."
The eye-opener
The response was so overwhelming that Becky was invited to be a member of the board at the orphanage and that's when she decided to pay a visit to the place.
"The orphanage had 54 infants and they seemed to have what they needed. But there was another disturbing sight on the road between the orphanage and my hotel. Every day I would see beggars with open wounds and disfigured faces begging for alms. Until then, I had no idea that this was leprosy. I thought leprosy had been eliminated and was only the stuff of folklore. Their condition was so terrible that it was difficult for me to even bring myself to look at them.
"Then one day a woman who had stumps for legs crawled to my car and began scratching at the tyres. I lowered the glass on the window to shoo her away and looked into her eyes.
I realised that the woman was just another mother, struggling to feed her children. That image haunted me as I flew back to America. I was so disturbed that I called my friends one morning to discuss what we could do."
First steps
That's how Rising Star Outreach was created in the kitchen of a suburban Atlanta home with four housewives and a secretary. On a balmy winter morning, Becky flew down to Chennai. "In the beginning, I had no idea where to begin. Their problems were so complex.
Their wounds were open, rotting, some had gangrene in their limbs and they were begging. But first I resolved to visit their colony and make an effort to look at them. Once I did, I realised they were poor, isolated and in need of love."
So Becky began visiting the leper colonies, taking rice, beans and saris for the women, bandages for their wounds and so on. The people who went with her to help her translate had no medical training. All they had was a resolve to do something and a lot of positive feeling.
"I had an associate, Vijay Kumar; he would dig out their wounds as they had no sensation in their limbs, pour salt crystals into them and bandage the wounds up. It was important to clean and bandage wounds so that
the festering did not reach the bone. Anything we did made them so grateful."
More than the disease, it is the ostracism that kills the dignity and self-esteem of leper patients. Leprosy is not just a disease, but considered a sort of a manifestation of sins that one may have committed. Once a person contracts the disease, everything changes.
The person's family, community and village shun him, he is forced to move out of the city limits, stay in filthy, ghetto-like colonies and made to beg for a living.
Loan ranger
Becky realised that donating food and clothing was not doing anything for the lepers. They still had low self-esteem and they still begged for a living.That is when she met Padma Venkatraman who made an all-important call to Becky in the US and invited her to join her initiative as a partner.
Padma, the daughter of India's former President, R.V. Venkatraman, lived in Vienna, Austria, and was
a permanent representative of the All India Women's Conference to the United Nations and a member of several NGO committees.
Before contacting Becky, she had worked for over 15 years with leprosy colonies, rehabilitating people in
31 colonies around New Delhi, five of which had been with Hope World an international NGO for leprosy rehabilitation.
Her philosophy was 'never give anything free to anyone'. Give them a micro-loan and teach them the important lesson of earning every penny for their upkeep.
Becky recalls how in the initial year, on a visit to a leprosy colony with Padma, she happened to just give away some funds and food to a woman who was crying. Padma told her in no uncertain terms that if she did that again, the partnership would end.
And Padma was right. Making inroads into the lives of these people was a challenge. "They were used to begging, the more wretched they looked, the better money they got as alms; their self-respect was at its lowest ebb, it was difficult to convince them that they could stand up for themselves and earn their living.
"Padma convinced them to take the micro-loans and start whatever businesses they could. In the beginning it was only the women in the leper colonies who came to our meetings and they took the initiative. These women earned a certain amount from begging and everyone contributed a fourth of their monthly earnings to create a fund.
For instance, if the women earned Rs400 a month, they set aside Rs100 every month for the fund. Every month, when funds were collected, one woman could take out a loan and invest in a small business she wanted, like buy an iron to start an ironing business.
When she had made enough money, she had to return the original loan along with her monthly deposit. The next woman could then avail the fund for another business opportunity.
"When the men saw women becoming successful at making money, they showed eagerness to join. There were clear rules for loans to motivate a better social life. For instance, if a man beat his wife, there would be no loans for him."
There were amazing stories of turnaround in these leper colonies that had hitherto been cesspools of inactivity, vice and begging.
A positive change
Becky recalls that after one such micro-loan meeting, a man called out to Padma from the last row. "He said, 'I have something for you'. He stood up and displayed a beautiful low stool he had made. This was important because this man, Muthushah had been very bitter and dejected at every meeting.
At the first micro-loan meeting Muthu had angrily shouted, 'What have you got for us, where is the rice and beans?' Padma told him, 'There is no rice and beans; we have got you an idea.' He was so angry that he staged a walkout and all the men followed suit. We were left with only five women.
When these women showed the turnaround, slowly the men came back. Muthu was a skilled carpenter and he was the last one to come around. He never believed he could actually employ regular people. With the loan he trained four other men in carpentry skills and has a thriving business with many other able-bodied men from the city coming to work for him. That stool he made was a testimony of his dexterity. Padma stood up to receive the gift and Muthu was weeping as he handed over his gift."
Gopal's story was moving beyond words, recounts Becky. "Gopal used to beg in the city. When the micro-loan scheme started, he took a loan of $6 to start a tea business and in no time rose to become an owner of a tea shop. He told me, 'When I used to beg outside the tea shop, the shop-owner would come outside and shoo me away.
Today the same shop-owner steps out to offer me a cup of tea because I supply tea to his shop!'
Soon all the 48 leper colonies were thriving with 1,000 successful businesses – a barber shop, a beauty parlour, a carpentry shop, livestock, poultry, farmlands – and the map of prosperity and happiness had been drawn out, all in a matter of a couple of years. No one begs. In fact one of the colonies has become so prosperous that it has two-storey houses and most of the people flash their cellphones, and ride around on motorcycles as they have graduated to become employers.
"The most beautiful sight for me was a woman who had just two toes on her foot and she had painted those! It was an ultimate testimony to her heightened self-esteem!" says Becky.
Addressing the issues
Rising Star Outreach deals with issues on several levels. The first issue was to provide medicines, therapy and treatments to the victims.
They have a board of Indian doctors, have set up mobile medical clinics and visit all the colonies. There is a staff of 25-30 people and others are hired as when the needs arise. People who require serious intervention have to be moved to hospitals, specialists have to be consulted as neglect leads to a lot of complications including blindness and loss of limbs.
Leprosy in the initial stages is easily treatable with a multi-drug therapy taken for a sustained period. Those in the second and third stages are also cured, but maybe left with disfigurement and amputations. But the medicines make them leprosy-free. So people need to be educated and made aware of their medical requirements. Today every patient from these colonies is leprosy-free.
The second issue was restoring self-esteem through economic empowerment, which was slowly and surely taking place in the colonies. The victims had not only found their lost respect and dignity through work, they had stopped begging and had hope for their future and those of the other members of their families.
Now most of them have been rehabilitated with micro lending and micro businesses. Now the organisation has designated one colony as the Centre and each colony sends in two representatives for repayment and fresh loan applications, bandages, medicines etc.
The children
The third issue was about rehabilitating the children of these victims. There is known to be a certain gene component that actively plays a role in a person contracting the disease, especially when he or she is in close contact with the bacterium. Today, all children in the colony are leprosy-free. But due to the stigma attached to the disease, these children were denied admission to mainstream schools. Rising Star Outreach started schools for these children.
The first school opened in April 2004 in a rented space for 27 children. The next one was started in another rented space with 32 kids in another leprosy colony.
Eventually, Rising Star Outreach bought 13.5 acres of land a few years ago at Thottanaval, two hours southwest of Chennai, to start a permanent school and a children's village for these boys and girls under 18. It is scheduled to be ready by the end of this year.
Currently it has two children's homes and each one houses 200 children sponsored by the Marriott Foundation Home. The Dick and Bill Marriott Home is for boys and the other named after Becky's eldest daughter is the Amber Douglas Home for girls. About 300 children are on the waiting list.
"We eventually aim to have three schools with a total of 720 children, says Becky. "About two-thirds of the children are from leper colonies and one-third from neighbouring villages, because we aim for total integration. We have an elementary school, a middle school and are in the process of establishing a high school."
The homes provide the children free clothes, meals and books and are taught the importance of hygiene apart from a regular curriculum taught in English. Care is taken to integrate the children with their parents.
Every week the children meet their parents and spend time with them. Says Becky, "The word has travelled so fast that we have children of victims coming from all over India and we have put them on the waiting list. We want these children to have a fair chance in life."
Integration
The fourth and most important issue was integrating these victims into the mainstream. That is an ongoing process. Barriers have to be broken; prejudices have to be dealt with. Says Becky, "We are working with 4,000 years of stigma; habits die very slowly. But in the last five years we have grown so rapidly.
We disbursed 3,000 loans for rehabilitating fishing villages. We have about 500 people working with us and have over 1,000 volunteers who visit us from all over the world each year.
These people, many of them young students, spend their own money to make this trip, mainly from the US and other places, work at the clinics cleaning wounds of the victims, building fences around leprosy colonies, preparing the ground for vegetable gardens and prepare farmlands.
The efforts of Rising Star Outreach have worked a miracle in these stigmatised colonies of Chennai. "Initially, when I came to meet these people, they would push us away, never look at us and be very stiff," recalls Becky. "Now when I go visiting them, a shout goes out and people come thronging. They hug me, bless me with their stumpy fingers and I can feel their love and warmth."
Becky continues to reside in Atlanta and visits India three to four times a year for prolonged periods to be able to run the projects. "When I am in Atlanta, I do all my regular jobs as a mom and a housewife. I get the kids out of the door, workout and prepare meals. But for Rising Star Outreach, the work never ends. I continue to communicate with donors, and set up presentations and meetings as it is a constant struggle to get funds for our projects.
"I have found a new meaning in life. I find it strange to think that I spent so many hours practising music or shopping earlier. I couldn't sleep earlier, but now when I go to bed I sleep soundly. I never have to wonder what to do when I get up in the morning!"
