A Journey: Moving from Personal Struggle to Collective Action
By Snigdha Sarkar
When my daughter was born, little did I know of the journey that lay ahead. She was born as an underweight infant, not uncommon in our country. Nobody seemed to be anxious about it and slowly she started gaining weight. Her milestones were little delayed but not enough to cause concern. When she was eight months old, what struck us was that she did not respond to any sound, as though sound did not exist for her. Doubtful, we took her to a renowned ENT Specialist. He saw her and packed us back certifying that there was nothing but wax in her ears and nothing at all to worry about. But I was worried. Reluctantly, he gave us another appointment after four months when she would be one year old. The doctor had a different opinion next time. His face was grim and he wrote out a prescription and asked us to get her hearing checked. We learnt that she had hearing impairment, in both ears, from birth – sensory-neural and had the highest degree of hearing loss, which was termed as profound loss of hearing.
I had no clue as to what was wrong with my daughter and what was I supposed to do for her. I had little idea about visual impairment but none about deafness. I had never seen a person with hearing impairment before. Through a family friend, we came in contact with an organisation that worked with children with hearing impairment as well as other challenges. We started visiting them with our daughter. I was passing through a phase of blankness when I did everything mechanically, feeling nothing. Few months had gone by before I could collect myself and comprehend the situation in its entirety. They fitted Sneha with a pair of hearing aids. They said that even though she had very high loss of hearing, she still had little residual hearing which, if amplified properly, could help her to listen to the sounds around her and this way she could learn languages and, gradually, to speak.
The work was started. PKK – Pratibandhi Kalyan Kendra – was located in Hooghly, some seven hours to and fro journey from our house in Kolkata, which we could make only once a week with Sneha being only one year old at that time. Slowly I started learning. I learnt about language development of my child with deafness and development of her oral communication. And without knowing, I also learnt about a world unknown to me before, where people faced extreme challenges for the better future of their disabled children.
I saw poor people coming to PKK from distant areas and without means to provide for their child, committed mothers battling with their abusive husband and mother-in-law and yet thriving to help their child. I had been very agitated by the fact that four precious months from my daughter’s life were lost but here I saw how parents lost years before they could meaningfully start helping their child. I saw their sadness, despair, and helplessness when they realized it was already too late. I saw how poor people were exploited in various places due to their ignorance. I gradually began to think that I was fortunate that my daughter lost only four months and began to feel grateful to the organisation that helped shape my daughter’s life.
I wanted to do something. PKK offered me work. I decided to leave my job with the Kolkata Corporation and joined PKK. I worked there for eight years. Starting as a volunteer, I gradually became involved in management, taking responsibilities for administrative jobs, fundraising, community awareness programmes along with handling projects. We moved to Bandel to stay near PKK with Sneha. She started going to a local government girls’ school and finished her primary education there. We came back to Kolkata when she was promoted to class V. She joined a well known mainstream school in Kolkata. I decided to stay at home to help with her studies as I was certain that she would find it difficult to cope in the city environment as she spent the earlier years in the suburbs. I was content helping her with her studies, speech, and extracurricular activities in the initial period.
However, a thought that often bothered me was that I should make use of what I learnt at PKK to help people. Gradually, I came in contact with few parents of children with deafness. The first two contacts were parents whose children went to the same school where my daughter studied, though much younger. We met and we felt we had a lot in common. We started meeting every month and discussed various issues relating to our children such as their education, language and speech development, difficulties faced in school, lack of friends, deafness and so on. Since my daughter was the oldest in the group and I had the privilege of past experience of working at PKK, I had a larger role to play. Slowly we formed a parents’ group which we named Anwesha Kolkata. We started taking up small activities for our children and for creating awareness within the school community. We organised regular programmes where our primary focus was school students, their teachers, Principals, departmental heads, heads of school educations boards, along with other members of the community. We organised story writing competition among students of mainstream schools, elocution contests, drawing competitions, inclusive cultural programme, Face to Face Interactions etc.
At this stage, we realised that we had to undertake tremendous toil with our children because many of us could not start early as we were not aware of early intervention when our children were young and we realised over the years that early intervention was the key for meaningful inclusion of children and persons with deafness in the society. We also knew that there were still many parents of small children with deafness who had no idea about early interventions for their children to stimulate their development. We decided to start an early intervention programme. This programme aims to start working with children with deafness from as early age as possible. The emphasis is on utilising the residual hearing in a deaf child with the help and effective use of hearing aids to enable the child to be exposed to the world of sounds. This way the child gradually learns to listen through hearing aids, learns to speak like other children, learn language, and finally be academically prepared for formal education in mainstream schools on attaining school going age. As we started finding answers to the problems of our children Anwesha became a happy family. The families that were associated with Anwesha felt stronger and more confident about their children and were more equipped to handle situations related to children, deafness, and life in general.
Over time we realised that one Anwesha was not the answer. Many more parents’ groups were required to be formed to ensure that their children with deafness had the opportunity of getting the right kind of support at the right age, which would also mean many happier families. Though developing many parents’ groups was a dream of Anwesha, the organisation was far too small to pursue this dream on a big scale. A friend organisation was about to launch a project that focused on empowering parents of children and persons with deafness and forming parents groups. They invited Anwesha to become a partner to the project. We were amazed at the coincidence and very happy to join hands with them. The project ended in four years but we have kept the movement alive.
There are now about 18 – 20 groups of different sizes, status and dimensions across the state of West Bengal that are becoming more aware about the issues around deafness, rights of their children to education, socialisation, means of livelihood and ways in which to address the issues and gain the rights. This had made the groups more conscious and committed towards ensuring rights of children and persons with deafness and promoting a process whereby they themselves can become part of the change making process. A state level federation of parents groups named, Pratidhwani WB, has been formed. The project by the friend organisation was undertaken in four states that raised our hopes and ambitions of having Pratidhwani in different states and eventually culminating in Pratidhwani India… some day.
Now my daughter has finished her college and joined for her Masters Degree. Years ago when Sneha was a little girl, I thought I was guiding her towards development. Little did I realise then that, in reality, it was she who was leading me to a path that was more beautiful, meaningful, and fulfilling.
[Snigdha Sarkar is a parent of a deaf young adult. She started a parents’ support group in 2004 and still takes an active interest in all the activities. She is the Secretary of Disability Activists Forum West Bengal.]