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| Rima Prajapati with daughters (from left) Jhoti, Aarti and Sangeeta. Jhoti and Aarti were both born deaf. Rima moved her daughters from their village to Mumbai so they could attend a school for the deaf |
In a country with over 28 national languages, Jhoti Prajapati did not speak at all. Her family, who lived in an Indian village in Maharashtra, was worried. When the child turned 3, her mother Rima took her to a doctor and got an explanation for the silence: Jhoti was born deaf.
The idea for this story was submitted as part of The Untold Global Health Story Contest, sponsored by CUGH, NPR's Goats and Soda blog and Global Health NOW of the Johns Hopkins Bloomberg School of Public Health. The contest is designed to give a platform to important but underreported global health stories. The story was proposed by Christi Batamula, an assistant professor at Gallaudet University, and by Matthew Yau, a Bachelor of Health Sciences student from McMaster University.
The diagnosis spurred Rima into action. For two years, she says, she worked diligently to acquire the disability certificate needed for Jhoti's admission to a school for the deaf. There are only 388 such schools in India, and none near her village. So at age 5, Jhoti moved with her mother to Mumbai.
That first year, however, Jhoti could not attend classes. The admissions cycle had closed by the time she received her certificate. Rima says Jhoti sometimes sat outside a school's gates, watching and hoping to learn something from afar.
The next year, Jhoti managed to enroll.
That was more than a decade ago. Flash forward to now. Jhoti is 16 and can communicate easily through sign language — which she does with her younger sister, Aarti, age 10, who was also born deaf and attends school with her.
They're the lucky ones.
Underreported And Underserved
It's a struggle for many deaf children to access appropriate education in India, a country where deafness — and disability generally — has been underreported and underserved.
The 2011 Indian census cites roughly 1.3 million people with "hearing impairment." Contrast that to numbers from India's National Association of the Deaf, which estimates that 18 million people — roughly 1 percent of the Indian population — are deaf. (Even that would be surprisingly low, considering that 3.5 percent of Americans and 5 percent of the world's population experience hearing loss.)
Part of this discrepancy is due to differences in survey methods or definitions of hearing impairment. But it also reflects a pattern. The latest census reported that 2.21 percent of the Indian population is disabled, compared to the global average for that year estimated at 15 percent. Underreporting is common partially because families are unwilling to disclose disabilities due to social stigma. And some census takers fail to understand and properly report cases of disability.
This invisibility has serious consequences, particularly in terms of government services and accessibility. It's also slowed the spread of Indian Sign Language (ISL).
Bias Against Sign Language
"India has been an oral country," says Madan Vasishta, a deaf writer and scholar who grew up in a village in northern India. "Only recently we have started to get some leverage for ISL." The pedagogical debate over oral education (teaching deaf people to read lips and speak, and discouraging — or even banning — the use of sign language) first raged in the U.S. during the late 19th century. Championed by inventor Alexander Graham Bell, oral education prevailed as the primary deaf teaching method until the 1960s, when American Sign Language (ASL) gained wider acceptance in the classroom.
India now faces this same debate decades later, as the majority of deaf schools use, or at least claim to use, an oral approach. "Schools that are oral actually use ISL, but they do not admit it," Vasishta says. "The teachers learn some signs from students and use them."
Why the enduring supremacy of oral education, even when schools are "secretly" teaching in sign language?
The National Institute of Speech and Hearing Disabilities (NISHD), which recognizes the controversy over oral education, argues in its position statement that there's an inconsistency in signs and lack of evidence demonstrating efficacy of a bilingual approach.
'Speak, Speak, Speak!'
But deaf people suspect the key factor is the intense cultural distaste for disability.
Anuj Jain, the joint secretary of the Indian National Association of the Deaf, describes his father's attitude toward communication with him as a young boy, yelling at him to "speak, speak, speak!" His father, Jain says, hid that there was deafness in the family from others, including the in-laws of his daughters who could hear, for fear the marriage would not be accepted.
"The Indian notion of a deaf person is they are dumb," explains Jain, who recalls spending nights with his younger sisters (also deaf), praying "God, please do something, do some kind of magic, so I can be a hearing person."
Because sign language is the visible marker of deafness, it's been similarly shunned. Varsha Gathoo, director of the Department of Education at NISHD, notes the "sign language is the stigma, more than the deafness."
Nikita Gupta, the daughter of two deaf adults, echoes this sentiment. As a young child, she often stayed with her grandmother while her parents worked. "My nani [maternal grandmother] used to tell me 'don't sign, don't sign,'" she recalls. "You feel humiliated when you are a little girl," she says, with "all the persons staring."
But she's no longer embarrassed. When signing with her mother on the Delhi metro, she spotted women staring at her. Rather than stop signing, she asked the women, "Do you want to learn?"
Sign languages, like spoken languages, are unique to their country of origin. That means ASL is different from British Sign Language. And so is ISL, which has formed gradually from a blend of local dialects.
While differences in spoken languages in India often create barriers in understanding, deaf people across the nation have been using signs to communicate for decades. When Vasishta and his collaborators did a linguistic analysis of signs in four urban centers across India in 1977, they documented over 80 percent understanding between deaf people from the different states. "There are some differences [in signs], but not serious enough to hinder communication," he explains. "A deaf person from Dehradun can and does communicate with a deaf person in Chennai."
In the years since, ISL has continued to develop through increased interaction among India's deaf population. "When people from different regions meet and communicate, the language becomes more standardized," Vasishta says. "It is a natural process."
But it's only now gaining government support. The Ministry of Social Justice and Empowerment took a big step in 2017 with the release of the first ISL dictionary. It's just in Hindi and English, however, which still excludes speakers of different Indian tongues — like Rima, who says she uses lip movement when speaking to her daughters, explaining that "they kind of understand."
At the NISHD, the director and the majority of the staff do not know or use sign language. The exception? Four deaf teachers who are part of the institute's ISL department, Vasishta says. A single post-graduate diploma course in ISL interpretation is offered each year. And there are only 250 certified ISL interpreters in the entire nation.
Because of this lack of resources, in a handful of major cities, "Finger Chat" groupsoffering a chance to learn ISL have been started by volunteers, but the scope of these grassroots efforts is limited.
The situation is particularly tough in rural areas, where deaf people can be isolated. Vasishta notes that after losing his hearing at age 11, he didn't meet another deaf person until he was 20. Such factors motivated Rima's move with Jhoti and her younger daughters to Shivaji Nagar, a Mumbai slum, where they share a two-room flat with Rima's brother and his family. Rima left her son and husband to tend to their homestead because she wanted her daughters to have "more opportunities in education and health care."
And most importantly, they have more opportunities to communicate. Each week, Jhoti and Aarti join 12 of their classmates at a deaf dance class sponsored by Apnalaya, a local NGO. Dancers from an elite troupe teach them elaborate bhangra dance routines to prepare for a public performance in South Mumbai. During rehearsal, most students do not wear hearing aids. The Bollywood tunes boom loudly over the stereo, and the students practice with bare feet to feel the music's vibrations. They use ISL and practice the choreography before and long after the class has ended.
Jhoti, like other deaf people in India, is constantly encouraged to learn how to function in the world of the hearing. But for this hour, she can be immersed in her own language.
Kate Petcosky-Kulkarni's reporting on the experience of people with disabilities in India was supported by the Pulitzer Center on Crisis Reporting. She is a freelance writer covering global public health. Reach her @kate_maushi.
The idea for this story was submitted as part of The Untold Global Health Story Contest, sponsored by CUGH, NPR's Goats and Soda blog and Global Health NOW of the Johns Hopkins Bloomberg School of Public Health. The contest is designed to give a platform to important but underreported global health stories. The story was proposed by Christi Batamula, an assistant professor at Gallaudet University, and by Matthew Yau, a Bachelor of Health Sciences student from McMaster University.
The diagnosis spurred Rima into action. For two years, she says, she worked diligently to acquire the disability certificate needed for Jhoti's admission to a school for the deaf. There are only 388 such schools in India, and none near her village. So at age 5, Jhoti moved with her mother to Mumbai.
That first year, however, Jhoti could not attend classes. The admissions cycle had closed by the time she received her certificate. Rima says Jhoti sometimes sat outside a school's gates, watching and hoping to learn something from afar.
The next year, Jhoti managed to enroll.
That was more than a decade ago. Flash forward to now. Jhoti is 16 and can communicate easily through sign language — which she does with her younger sister, Aarti, age 10, who was also born deaf and attends school with her.
They're the lucky ones.
Underreported And Underserved
It's a struggle for many deaf children to access appropriate education in India, a country where deafness — and disability generally — has been underreported and underserved.
The 2011 Indian census cites roughly 1.3 million people with "hearing impairment." Contrast that to numbers from India's National Association of the Deaf, which estimates that 18 million people — roughly 1 percent of the Indian population — are deaf. (Even that would be surprisingly low, considering that 3.5 percent of Americans and 5 percent of the world's population experience hearing loss.)
Part of this discrepancy is due to differences in survey methods or definitions of hearing impairment. But it also reflects a pattern. The latest census reported that 2.21 percent of the Indian population is disabled, compared to the global average for that year estimated at 15 percent. Underreporting is common partially because families are unwilling to disclose disabilities due to social stigma. And some census takers fail to understand and properly report cases of disability.
This invisibility has serious consequences, particularly in terms of government services and accessibility. It's also slowed the spread of Indian Sign Language (ISL).
Bias Against Sign Language
"India has been an oral country," says Madan Vasishta, a deaf writer and scholar who grew up in a village in northern India. "Only recently we have started to get some leverage for ISL." The pedagogical debate over oral education (teaching deaf people to read lips and speak, and discouraging — or even banning — the use of sign language) first raged in the U.S. during the late 19th century. Championed by inventor Alexander Graham Bell, oral education prevailed as the primary deaf teaching method until the 1960s, when American Sign Language (ASL) gained wider acceptance in the classroom.
India now faces this same debate decades later, as the majority of deaf schools use, or at least claim to use, an oral approach. "Schools that are oral actually use ISL, but they do not admit it," Vasishta says. "The teachers learn some signs from students and use them."
Why the enduring supremacy of oral education, even when schools are "secretly" teaching in sign language?
The National Institute of Speech and Hearing Disabilities (NISHD), which recognizes the controversy over oral education, argues in its position statement that there's an inconsistency in signs and lack of evidence demonstrating efficacy of a bilingual approach.
'Speak, Speak, Speak!'
But deaf people suspect the key factor is the intense cultural distaste for disability.
Anuj Jain, the joint secretary of the Indian National Association of the Deaf, describes his father's attitude toward communication with him as a young boy, yelling at him to "speak, speak, speak!" His father, Jain says, hid that there was deafness in the family from others, including the in-laws of his daughters who could hear, for fear the marriage would not be accepted.
"The Indian notion of a deaf person is they are dumb," explains Jain, who recalls spending nights with his younger sisters (also deaf), praying "God, please do something, do some kind of magic, so I can be a hearing person."
Because sign language is the visible marker of deafness, it's been similarly shunned. Varsha Gathoo, director of the Department of Education at NISHD, notes the "sign language is the stigma, more than the deafness."
Nikita Gupta, the daughter of two deaf adults, echoes this sentiment. As a young child, she often stayed with her grandmother while her parents worked. "My nani [maternal grandmother] used to tell me 'don't sign, don't sign,'" she recalls. "You feel humiliated when you are a little girl," she says, with "all the persons staring."
But she's no longer embarrassed. When signing with her mother on the Delhi metro, she spotted women staring at her. Rather than stop signing, she asked the women, "Do you want to learn?"
Sign languages, like spoken languages, are unique to their country of origin. That means ASL is different from British Sign Language. And so is ISL, which has formed gradually from a blend of local dialects.
While differences in spoken languages in India often create barriers in understanding, deaf people across the nation have been using signs to communicate for decades. When Vasishta and his collaborators did a linguistic analysis of signs in four urban centers across India in 1977, they documented over 80 percent understanding between deaf people from the different states. "There are some differences [in signs], but not serious enough to hinder communication," he explains. "A deaf person from Dehradun can and does communicate with a deaf person in Chennai."
In the years since, ISL has continued to develop through increased interaction among India's deaf population. "When people from different regions meet and communicate, the language becomes more standardized," Vasishta says. "It is a natural process."
But it's only now gaining government support. The Ministry of Social Justice and Empowerment took a big step in 2017 with the release of the first ISL dictionary. It's just in Hindi and English, however, which still excludes speakers of different Indian tongues — like Rima, who says she uses lip movement when speaking to her daughters, explaining that "they kind of understand."
At the NISHD, the director and the majority of the staff do not know or use sign language. The exception? Four deaf teachers who are part of the institute's ISL department, Vasishta says. A single post-graduate diploma course in ISL interpretation is offered each year. And there are only 250 certified ISL interpreters in the entire nation.
Because of this lack of resources, in a handful of major cities, "Finger Chat" groupsoffering a chance to learn ISL have been started by volunteers, but the scope of these grassroots efforts is limited.
The situation is particularly tough in rural areas, where deaf people can be isolated. Vasishta notes that after losing his hearing at age 11, he didn't meet another deaf person until he was 20. Such factors motivated Rima's move with Jhoti and her younger daughters to Shivaji Nagar, a Mumbai slum, where they share a two-room flat with Rima's brother and his family. Rima left her son and husband to tend to their homestead because she wanted her daughters to have "more opportunities in education and health care."
And most importantly, they have more opportunities to communicate. Each week, Jhoti and Aarti join 12 of their classmates at a deaf dance class sponsored by Apnalaya, a local NGO. Dancers from an elite troupe teach them elaborate bhangra dance routines to prepare for a public performance in South Mumbai. During rehearsal, most students do not wear hearing aids. The Bollywood tunes boom loudly over the stereo, and the students practice with bare feet to feel the music's vibrations. They use ISL and practice the choreography before and long after the class has ended.
Jhoti, like other deaf people in India, is constantly encouraged to learn how to function in the world of the hearing. But for this hour, she can be immersed in her own language.
Kate Petcosky-Kulkarni's reporting on the experience of people with disabilities in India was supported by the Pulitzer Center on Crisis Reporting. She is a freelance writer covering global public health. Reach her @kate_maushi.
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