1. CHILDREN - AN INHERITANCE FROM ABOVE, AND A TREASURE TO CHERISH AND FEEL PROUD
My father-in-law considered himself one of the happiest men living. He used to often say that he had received from life much more than he deserved, much more than he gave.
I used to secretly wonder, did he really mean it? He had such a simple ordinary life, he spent half his life struggling to give his children good education and he did not even own a house!
It took me years to realise the secret of his happiness. He was happy for his children who made him proud. I can sense flickers of that happiness sometimes now.
My daughter is eleven, reading in a school in 5th Standard in Kolkata. I dream she too will grow up to be a contributing member of the society.
2. DIFFERENT BUT NOT DEFICIENT: AN ONGOING STRUGGLE
She is a little different than most of us. She was born with a hearing impairment. Children who are born with hearing impairment usually have a very high degree of hearing loss. In our country, they are termed as deaf and dumb. A small percentage of them go to special schools, receive insignificant education, use sign language and live in a world of silence. A minute section of them receive inclusive education. The rest of them, mostly living in villages, receive nothing.
Fortunately for my daughter and myself, she has a different life. With a profound binaural sensori-neural loss of hearing (highest degree of nerve deafness in both ears) she was integrated right from the beginning, receiving inclusive education. And what's more important is that she is integrated in every possible sense. She learns dance, writes poems, she has a long list of hearing friends. She is a happy child.
It did not happen over night. It is a struggle that began from her first birthday and is still on . . .
3. THE INITIAL SHOCK
Our first experience relating to the detection of my daughter's deafness was quite shocking. The ENT specialist first examined her when she was eight months old. He sent us home saying she had no problem. We went back home, relieved and happy. After four months when we revisited him, he pronounced her to be hearing impaired, when we were expecting it in the least. The world seemed to close before us.
I was angry with the doctor for years, for wasting four precious months of our daughter's life, till I saw, how due to lack of awareness on the part of doctors, years were wasted for children and how helpless their parents were. My anger diminished.
3. FINDING THE RIGHT PLACE IN THE SOCIETY
Finding the right place for her was crucially important. But we were lucky to find PKK-Pratibandhi Kalyan Kendra in Hooghly, W B, soon enough and within two weeks of her first birthday Sneha was wearing a pair of hearing aids. She looked like a little robot with two small boxes (hearing aids) fastened on her chest and two speakers plugged in her ears through a cord each.
Each child is unique, and the environment of every child is different. Every child has to be considered as a potential individual and only then can a child find the right place in the society.
I must mention here that whatever my daughter has been able to achieve so far has been entirely because of PKK and whatever she will achieve in life will be owed to PKK, who laid the foundations of her life and has been my tutor. While I have learned technical issues like audiology and its crucial importance in the language development of a child with hearing impairment at PKK, I have also learned social issues like inclusion there. I have been instilled with the confidence that my daughter is has potential as any other child has and that she can grow just as much.
4. AT SCHOOL
That little one year old girl is eleven today, grown into a little lady, reading in class V. I consider myself very fortunate that I have always found supportive people around me. But I have seen sufferings of parents, rich and poor, urban and rural, educated and illiterate.
5. THE LOT OF THE MULTITUDE: HOW TO OVERCOME THE PREJUDICE AND IGNORANCE?
It happens because we as parents fail to play our role for our children and it happens as our state and community close their eyes to them, barring a few exceptions, much of which is due to lack of awareness and the right attitude. The prevalent superstition in the society is another stumbling block in the face of their development.
As I look back to those days when I was struggling to put my daughter in a general school, what I experienced was more of ignorance than unwillingness, more of apprehension than negligence. General people do not know about disability, and so they fear an encounter with it. This ignorance and fear of the unknown lead to a negative attitude. Once this barrier is over come, things can be much brighter, and in the process, both the school authority and the parents can develop a rational expectation of one another and can even complement each other. I say this from my personal experience.
6. ATTITUDE MATTERS MOST: PROCESSES OF INTEGRATION
It is the attitude, which matters most. It is equally true for both schools as well as parents. Successful integration of a child with disability in the main stream education depends on various factors.
Even before a child is educationally integrated, the child needs to be integrated within her own family, within her community. She needs to be integrated socially before she is integrated educationally. Inclusive education is a part of a child's life and not the whole in itself. Inclusion is an internationally established right today. But we have to accept it in correlation with our country, its resources, its systems and its practices, which unfortunately still dwell on a charity model rather than considering it as an issue for development. And this attitude is reflected all over.
7. EDUCATION FOR THE HEARING IMPAIRED IN INDIA
There are two kinds of educational inclusion in our country at present. One is, integrating a child because the Act says so, knowing fully well that she would not succeed because of lack of support structure; and neither the family, nor the school nor the state is bothered. The other is where a child with disability can succeed with proper support structure having a supportive family and positive environment at the general school. Both the pictures coexist, though the later exists in a microscopic form. We need to work to bring more children from the former to the later group.
A school can play such an important role in this. The children follow the teachers as their role models and this is the time when their characters, personalities are being formed. In an inclusive school, it is not only the children with special needs, who benefit from the school but the other children also receive valuable education through simply being friends with them. They learn inclusion through a daily practice and grow up as socially responsible individuals.
The school where my daughter goes does not have a special support structure. If I expect that, it would be more than they can offer. But they have given her a positive and friendly environment. They have encouraged other children to be friends with her. They have made the little adjustments possible for her within their main frame. What more can I expect? Yes, even beyond these, she has certain special needs, which is possible to be addressed by the general school but it is too early to expect that.
8. SPECIAL SCHOOLS: STUDENTS DO SUCCEED
Here I must stress on the role of special schools and the NGOs that work with children with disabilities. Since they are much more knowledgeable on disability, they have a responsibility of guiding families towards inclusion as also preparing general schools for accepting children with disabilities. But unfortunately, lack of awareness prevails in this quarter also. Not all-special schools in India are still oriented with the idea of inclusive education.
In the developed countries the special support structure, to meet the special needs of students with disabilities, is an integral part of a school set up. But in our country this facility is available only in special schools, which are highly insufficient in number. The fact that children with hearing impairment do not succeed educationally is because we can not provide them with the necessary infrastructure to compensate their hearing loss in a quality way. A child with hearing impairment is just as educable as any other child of her age. Those who get the benefit of special support from an early age, succeed.
9. THE PWD ACT OF 1996 AND POOR FAMILIES
But these successes have a tremendous toil and struggle behind them. The few successes that we can see around us are because of the endless sacrifice of families, fighting against all odds at every step. Helping the child with the curriculum in her school, her hearing and hearing aid management, providing her with the ongoing support from the special school is a mammoth task and difficult to fulfill for low income families. The family needs to be able to meet the substantial costs of hearing aids, their batteries and maintenance. With the advancement of technology, better hearing aids are available today but due to marketing strategies of the MNCs and taxes levied on these items, quality hearing aids are beyond the reach of ordinary people. Maintenance of hearing aids sometimes are even more difficult owing to high costs and lack of appropriate after sales service support.
The PWD (Persons With Disability) Act, 1996 had directed the appropriate governments to modify the examination system and the curriculum to meet the needs of children with disability, it had clearly spelt that students with hearing impairment should have the facility to study through one language only. None of the above has been implemented in West Bengal till date adding to the handicap of the children struggling with all their might. The aids and appliances that the children from low-income families receive from different agencies do not fulfill their need. As a result, they are often discarded by the children and their families, after a time, since they bring no change in a child's life.
The Governments along with the NGOs need to take a lot of initiative to change the state of affairs in order to successfully include children in the mainstream schools, and recognize them as a potential productive force for the society and the country.
10. TO CONCLUDE: THE HEARING IMPAIRED CAN SPEAK LIKE OTHER PEOPLE
The schools need to view this issue positively. A lot can be done for these children even in the given situation. Twenty years ago it was a myth that hearing impaired children could speak like ordinary people. But it has been possible. More and more children are coming under inclusive education. Even though small in number, some lives have been lit with the light of knowledge and many more are awaiting this. Each of us can make a difference in their lives, make them more meaningful. We can change a lot with a positive attitude. It will cost us nothing but will bring an ocean of change in the lives of these children and will be a good deed done to the society.