Mary - common name, uncommon life!

Mary, a student of Class IV, lives in Massar, a picturesque village housing about 600 people in the East Khashi Hills in Meghalaya. The village is, however, more known for a disability that plagues about 20 families than its beauty.

Massar, a village spread over two hills, has 43 deaf people, all of them belonging to the Nongsten clan. In what is one of the major problems in the village, and one that needs immediate intervention, the majority of the people of this clan suffer from progressive deafness.

Mary is the only member in her family who can still hear. But she too, is suffering from a mild hearing loss already. She responds well to loud sounds but does not hear softer sounds. Her disability is invisible. Often in course of a normal conversation she will stare at the person who is speaking to her. It is then that one realises that she is lip-reading. Her mother and her three brothers are all deaf and so is her maternal uncle who lives with them. The family makes brooms to sell for a living like several others in the village.

Mary’s mother (right) and her two brothers

One of Mary’s brothers works in Shillong as a daily wage labourer to support the family. She has two hearing cousins. A fun-loving child, Mary loves playing with her friends and she enjoys school.

Mary doesn’t talk much, but she tends to smile a lot. A smile, after all, is known to be able to cross the boundaries of all language.

Mary, (left) with her friends (right)

Meidil Nongsten..she is a mother too!

Meidil is a single mother to three boys. The eldest, Pyn Kmen Lang is 20 years old. Pynsuk Nongsten is 19 and Marcon is 14 years old. They live in Massar, a village set in the beautiful East Khasi Hills in Meghalaya. Massar spreads over two hills in the region and houses about 600 people. This Nongsten family makes brooms and cane baskets for a living. Nothing unusual. Yet, what sets the family apart from many others is the fact that Meidil, Pyn Kmen and Pynsuk are all deaf and Marcon is losing his hearing by the day.

Meidil Nongsten

This family, like 20 other families of Massar, suffers from post lingual progressive deafness. Pyn Kmen and Pynsuk have only attended school till Nursery. They stopped going to school because they couldn’t hear properly. Macron, the youngest of the three brothers, studied till Class IV. In fact, he also gave his half yearly examinations for Class V. He dropped out after that. Macron feels shy because he doesn’t hear well in class.

As they had already acquired language before their deafness started progressing, Meidil and her two elder sons rely a lot on lip-reading. Meidil is disappointed that all her children are losing their hearing. She thinks that education is very important for everyone. She knows that Marcon is an intelligent child, and she wants him to continue his studies so that he can help his family. Macron being the most educated in the family keeps the accounts and handles all the money.

As a child, Meidil enjoyed going to school herself. She studies till Class I and knows how to read and write. She can sign her name as well. Meidil is completely certain that if someone convinces Marcon to continue his studies, he will have all the support he needs from his family.

Meidil with her sons – Marcon (extreme left) Pynsuk (Middle) and Pyn Kmen (extreme right)

VAANI aims to reach the mothers of children between 0-12 years of age, so that with the early intervention, mothers like Meidil are not left disheartened that their children are shying away from education, from communication, from life.

We hear a lot of stories of courageous mothers who brave all kinds of problems to secure a safe future for their children. Meidil is probably not one of them. She is just one of those mothers who want her children to be able to fend for themselves. She is a scared mother, because she has shared the experience of being deaf with her children. She knows what happens when the world around suddenly goes silent.

He cannot hear the world but he makes sure he is heard - Rituraj Rabha, Assam

Rituraj at home, getting ready for class with his tutor

Rituraj is a 12 year old boy who loves playing cricket. He plays regularly with a group of 10-12 boys in his village located in Dimoria block in Assam. He studies in Class – VI and lives in a joint family where he is the eldest of the children. He has a brother and a sister and is quite close to them. Like any other 12 year old, he is naughty and friendly. Unlike every other 12 year old, he is deaf.

This invisible disability separates Rituraj from the boys he plays with. He ‘looks’ completely normal, his life is far from it.

He struggles to understand little things that would be common sense to a hearing child. It has nothing to do with his intelligence quotient.

Rituraj is one of the children that Swabalambi, VAANI’s partner in Assam works with. His mother, grandmother and his paternal uncle (father’s elder brother) are the three people who closely follow his trainings. They are also the ones who take training from CBR worker Bipin to communicate properly with Rituraj.

Though Rituraj’s mother identified his deafness when he was around four years old and still did not speak, Swabalambi got involved with him only when he was nine years old. While working with him, the Swabalambi team realised that while Rituraj was not adept at communicating all his thoughts, he was a very fast learner. Rituraj tries to talk, but his speech is limited. He signs and he follows the sign language well, but he loves to draw to express himself.

He is now good with numbers, words and short sentences and uses the teaching aids comfortably to answer and ask questions. His school is very sensitive to the fact that he is deaf. His teachers know the Swabalambi team and seek assistance whenever they have a problem communicating with Rituraj. He is allowed to sit in front and with friends with whom he tends to communicate more.

Even his community members and family members are very supportive and enthusiastic of the intervention made by VAANI. The fact that he now communicates with his family and friends is an unexpected bonus for them. They have extended all their support to ensure that Rituraj gets his rights and is able to live a life that is comfortable, rewarding and fulfilling, for himself and for others around him.