| Source – Project deaf India | |||||||||
Silent VillageA Rotarian returns home to help India’s forgotten deaf population. by Janice Somerville Chambers Deep in the forests of southern India, Rotarian Rajendra “Raj” G. Desai, M.D., Ph.D., and a team of researchers from India and the U.S. National Institutes of Health (NIH) travel over a twisting, narrow dirt road, their truck thudding over unexpected craters and lurching to avoid rocks and fallen trees. Up before dawn, the group has journeyed nearly three hours from Hubli-Dharwar, the nearest city. Their destination, a small tribal village, lay obscured by the dense vegetation. As they pull into the main clearing, more than 500 people gather in their finest, though threadbare, attire to greet the visitors — an infrequent occasion in the desolate and neglected region. The singing of birds is clearly audible through the crowd, despite the excited and animated welcome. A stillness prevails that cannot be explained by the absence of traffic, radio and other trappings of modern life. At least a third of the villagers are hearing-impaired or deaf. For generations, the villagers have communicated through gestures and lip reading, a skill passed down from father to son, and mother to daughter. Several theories (among them, genetics, consanguinity, malnutrition and polluted water) have emerged since a journalist first discovered the “deaf village” just months before Dr. Desai’s arrival in November 1999, his expedition funded through The Rotary Foundation’s Grants for Volunteers program. The team set out to diagnose deafness among the villagers, determine a cause and begin treatment. The members construct a makeshift clinic under the largest banyan tree, resting a wooden plank on two boulders. The villagers line up for the examinations with hopeful anticipation. “They greeted us like family,” Dr. Desai recalls. “They thanked us over and over, and then they asked: ‘When are you coming back?'” They asked the right person. The journey to the remote “deaf village” was just one part of Dr. Desai’s mission to improve the antiquated deaf education system, initiate early detection and improve the lives of the hearing-impaired in India, which has one of the world’s highest rates of deafness. Less than three years ago, he launched Project Deaf India, shortly after becoming a member of the Rotary Club of Newport-Balboa, Calif., USA. The effort began as a collaboration between his club; the Rotary Club of Mysore, India; and Gallaudet University, the world’s only liberal arts college for the deaf. Since then, the project has received two Matching Grants and three Grants for Rotary Volunteers from The Rotary Foundation of RI. Dr. Desai, 77, has tirelessly crossed the globe, raising funds, coordinating logistics and soliciting volunteers. Dr. Desai knows firsthand the difficulties faced by families with deaf children. In the autumn of 1964, his wife, Pratima, was pregnant with their fourth child. One afternoon, a child from their close-knit Boston neighborhood stopped by for a glass of milk. The next day, he was diagnosed with German measles. That year, an epidemic of measles swept through the United States, and an estimated 60,000 infants were born deaf and suffering other congenital defects. “As a physician, I was aware that the brief exposure could cause birth defects, despite the fact that my wife showed no signs of infection,” he recalls. Physicians reassured the couple that their child would be healthy, but Dr. Desai was not so certain. Almost immediately after his daughter, Anjali, was born, he tested her hearing by ringing bells and clapping, but she did not respond. By the time she was a month old, the evidence was indisputable: Anjali was totally deaf. “For our family, it was a catastrophe. We didn’t know what to do,” he recalls. “We went through much soul-searching, and we gathered as much information as we could to offer her the very best opportunities,” he says quietly. When Anjali was 8 months old, Dr. Desai uprooted the entire family and moved across the country to California, so that the infant could be treated at the renowned John Tracy Clinic, a free clinic named for the deaf son of actor Spencer Tracy. Dr. Desai fortunately found a prestigious position as chairman of the oncology department at the Orange County Medical Center at the University of California- Irvine. The school provided excellent psychological support, but they were soon disenchanted with its approach, which strictly emphasizes lip reading and speaking.
Rotarian Desai is not a man easily dissuaded from action, and true to form, he placed an ad in a local newspaper, searching for parents of other deaf children who might be interested in a more holistic approach. He and several other parents started their own school, the first in the area based on the Total Communication System (TCS), which teaches sign language and finger spelling in addition to oral communication skills. The orignal campus has closed, but the group has since opened five additional schools. The once-controversial approach is now considered mainstream. Today, Anjali Desai-Margolin has a master’s degree and works as a career coordinator at Gallaudet University in Washington, D.C. Her husband is also deaf, and they have two hearing children, who are “bilingual.” Rightly so, Dr. Desai credits Anjali’s success largely to early diagnosis and education. Since 1993, the NIH has recommended that all newborns be tested for hearing loss, as children diagnosed later in life fail to receive adequate sensory stimulation, and their language “circuitry” may never fully develop. The average age of detection in the United States is 2 1/2 years old, and 28 states have mandatory testing of newborns. Dr. Desai estimates that in India, the average may be as old as 6. On a 1998 visit to India, from which Rotarian Desai emigrated nearly a half century ago, he read a newspaper article about the discovery of the so-called “deaf village.” He learned that India has one of the highest rates of deafness in the world. Most of the deaf are illiterate and uneducated. Discrimination is rampant. He began to wonder if he could give India’s deaf children the same opportunities for education and employment that his daughter had received. “Why can’t I bring more Anjalis into the world?” he asked himself. Almost immediately upon returning home, he launched Project Deaf India. The first phase, a $40,000 project funded partly by a Matching Grant, provided a mobile detection unit and audiometer for early diagnosis of deafness, hearing aids for deaf children, training for local teachers in the Total Communication System of deaf education, and an electronic microscope that enables a rural hospital to conduct corrective surgery on deaf patients. The project quickly drew interest. O.P. Vaish, RI director; and T. Ramesh U. Pai, past RI director, have been instrumental in supporting Project Deaf India, and six other California clubs have joined as sponsors. In 1999, a Grant for Rotary Volunteers paid for two teachers from Gallaudet University to provide instruction in sign language to children and their families in Mysore for three months. Few deaf people in India know sign language, both because of a lack of funds and because of logistical problems-India has 38 different languages. Dr. Desai is promoting the use of English as a universal sign language in India. To that end, he also arranged for a third Rotary Volunteers grant from January to March 2001. The grant paid for the head of a prominent school for the deaf in New Mexico, USA, to explore the possibility of teaching American Sign Language and computer skills in India. Last August, the group received a Matching Grant to assist the “deaf village.” The $20,000 project, funded in partnership with Dr. Desai’s club and the Rotary Club of Hubli Mid-Town, supplied three subterranean wells and a water distribution system. The Rotarians also helped set up monthly health clinics, and supply multivitamins and hearing aids. In addition, they have reduced the incidence of ear infections in the village by curbing a tribal practice of inserting tainted coconut oil in the infants’ ears to prevent “leaking ear,” which generally precedes deafness in the village. The NIH is still investigating the exact cause of the extraordinarily high rate of deafness in the village. It is likely that malnutrition, heredity, cultural habits and a contaminated water supply all play a role. The local people, however, call it “God’s curse.” “It is believed there are many more deaf villages hidden in the forests of India,” Dr. Desai says. And just as these villages are overlooked by the rest of society, so, too, are most of the deaf in India. The unemployment rate is about 50 percent for the hearing impaired. “Deafness is still considered a stigma in India,” he says. “Deaf children are discarded and sent to poorly supported government schools. The schools are old, and the children are taught alongside the mentally handicapped. A large number of deaf adults are beggars, and most of the rest are doing some sort of menial job.” Dr. Desai’s goal for the project now is to start a computer school, which would require $5 million. He has a long way to go, although a fundraiser netted $25,000 last September. “With computer skills, these children can grow up to be self-supporting, productive citizens.” Where he once worked tirelessly to ensure a happy and productive future for his daughter, he now has devoted that same energy to deaf children in his native country, winning support from noted experts such as J. King Jordan, the president of Gallaudet University. “Gallaudet has a long history of providing opportunities to deaf international students, and we have seen many of these students prosper and succeed here,” he says. Many graduates who return to their native countries “tell me that there are other extremely capable deaf people back home, but for them, the doors to opportunity are shut. By supporting Project Deaf India, [donors] are helping make life better for many children in India.” Rotarian Desai has visited India 10 times for the project, although he is sidelined temporarily, to his great disappointment, by a fall he suffered while crossing a precarious footbridge on his latest trip. While recuperating at home from knee surgery, he works the phones, soliciting donations and persuading groups to listen to his story. His latest triumph is a hard-fought battle to convince someone in California’s wealthy Silicon Valley to hear his presentation. An Indian technology association has finally granted him five minutes the following week. “I’m no salesman,” he says, “but if I can just reach one soul, it will be a start.” When a story first surfaced about a village of the deaf, journalist Shivananda Kalave, who broke the story, was skeptical. “I went to the village feeling sure that such a village did not exist,” he reported. Dr. Desai, too, faces doubts about his plans. But his daughter, for one, does not share them. “My father has always set ambitious goals and achieved them. If the project can be done, he will find a way to see it completed,” Anjali says, then adds: “He never gave up on me.” Janice Somerville Chambers is senior editor of The Rotarian.
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