Snigdha Sarkar
Snigdha Sarkar
KolkataIndia
My Story
Finding out
It was August 1992 and we were preparing to celebrate our daughter’s first birthday when we received the news. The doctor told us she had a problem and prescribed a hearing assessment for her. Four months earlier, he had found Sneha perfectly healthy. We were both puzzled and stunned and didn't even think of asking him anything at the time.
We took Sneha to the audiologist the next day - at that time I did not know what an audiologist was. He performed some tests and said she had a ‘congenital sensory-neural binaural profound loss of hearing’ - words that carried no meaning for us. I went back to the doctor the next day with the test results. He gave us the names of two special institutions in Kolkata on a piece of paper and that was all the help he provided.
At that time we were so struck by the situation that we were not in a position to ask or expect anything from any one but now I think - wasn’t it the duty of the doctor and the audiologist to explain the situation to us? None of them even considered what we were going through!
Broadening horizons
When I look back to those early days, I realize that we did not give in to self-pity. My husband and I never asked why this happened to our daughter, Sneha. Instead, we discussed the things that needed doing. We did not listen to lay people’s advice, including our relatives. Now I know that we were right. Within a month of realizing our daughter was deaf, we found Pratibandhi Kalyan Kendra (PKK) in Bandel, Hooghly. I am one of those few lucky parents who had to waste very little time before reaching the right place.
PKK took a holistic and comprehensive approach that aimed to support parents and families. It helped them access information, learn new skills and develop positive attitudes. The pre-school programmes for young deaf children placed emphasis on a natural aural approach. The teacher worked with the deaf child along with the mother to enable her to learn the skills. Regular workshops were held to enhance the knowledge and understanding of parents.
They also had a very good individual and group counselling service for the parents, and extended families. It was a concept of “all under one roof” that PKK promoted especially because they worked with people from very diverse backgrounds. Many of the people who went there would not have been able to access any other services. We met other children and parents at PKK and that itself was a great learning experience. We also saw parents coming from difficult situations due to poverty, distance or a non-cooperative family. When we saw older children who could speak, we became hopeful that our daughter would also learn to speak.
We were also lucky that we lived in a city and had the education and resources to access the facilities for our daughter. Most people (70%) live in rural areas and have almost no access to the services in urban and semi urban areas.
Moving to the regular school
When Sneha was six years old, we put her in a girls’ school in Bandel, in the pre-primary level. She was the first disabled child to attend this school and there was resistance at the beginning. Sneha had a right to study in this school. The Persons with Disability Act in 1995 ensured that children with disabilities could be educated in regular schools.
Sneha was fortunate in having a highly sensitive, caring and supportive teacher throughout her primary years. In the first year she failed one subject (environmental science) in the annual exam. Out of a sense of protection, the teacher wanted to keep her in the class for another year. We had a difficult time persuading her to accept that this would do more harm than good. Once she was convinced that Sneha should be promoted to the second year, she became a ‘guardian’ and ensured she did well in her studies.
After she reached class 5, we moved back to Kolkata. I felt that Sneha no longer needed intensive support so she went to a government girls’ school near our house. At first, the Headmistress was reluctant to take her because she did not do well in the admissions test. After much persuasion she was admitted. There were about 75 students in her section and she did not enjoy this school. She kept asking me to take her back to her old school. Sneha moved to another school which she liked from the very first day.
When I look back on those days I realise that I experienced ignorance not unwillingness. Most people do not know about disability and so fear it. Once this barrier is overcome, the school and the parents can develop a rational expectation of one another. It is very important to prepare both the child and the school for inclusion – the school must be ready to accept a child and the child must be ready to receive an education in the inclusive system. The skills and confidence gained during her early years really helped Sneha to make the most of her school in Kolkata.
Some schools integrate children because the Act says they should – knowing fully well that the child will not succeed and that in many cases the school, the state and the family doesn’t really care. Real inclusion requires a positive environment at school and a supportive family. We need to work hard to give more children this opportunity.
Sneha’s school does not have any special support structure, but they have given her a positive and friendly environment:
- they allow her to sit in the front row all the time
- they make eye contact with her so she can follow what is being said
- they have asked other students to help her
- the teachers encourage her to ask questions
- they do not discriminate against her – either positively or negatively
- they have helped her develop a sense of belonging in the school.
The Future
My daughter Sneha is now fifteen. She is a balanced, well-adjusted child. She is in class IX. She knows she has hearing difficulty but she also knows that she has to cope with it like any other problem. She has friends at school. She is confident and happy. But the struggle continues. She has to struggle very hard to cope with her studies. The over-all scenario has not changed significantly in this span of time. The problems of our deaf children are not effectively addressed by any system. Due to advent of technology and open market situation good hearing aids are available today but good guidance to use them effectively is not. Inclusive education is encouraged but steps are not taken for the children’s effective inclusion either in the school community or in the education system. Those of us who do not want to accept defeat have to work very hard to help our children succeed.
People often refer to such an experience as a tragedy, a catastrophe. But arrival of Sneha in our lives has given us so much, has broadened the horizon of our lives to such an extent that we cannot think of our lives being different. Yes, we have had to struggle, perhaps struggle a lot, being ordinary people with limited resources. But we have learnt with her, grown with her and are still growing.
She has opened a new world for us that gave us opportunities to get to know real good people who are silently shaping and changing lives. We witnessed such sufferings of families and children that their helplessness made our troubles seem insignificant and have transformed our lives. Today I am planning to start practicing law, which I had given up for her, with a new perspective. What I had planned to do only for myself has turned out to be an inspiration for me to help others. I would have never learnt to think for others if I did not realize that some people somewhere had thought for her even before she was born.
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