Mom Speak : Living With Disability

Editor's note: I met Anupama, as I meet most Indian Moms these days, on Instagram. The fact that she too was an expat mom of two like me, living in Europe made her a kindred spirit of sorts and I started following her feed. The first time we struck up a conversation, she told me that she was a Malayali from Kochi who did not speak Malayalam and that she only spoke English. Sensing my mystification she explained that she had been diagnosed with severe hearing loss at the age of two. She told me about her mother who pulled out all the stops to empower her despite limited resources in the 80s and of her own struggle towards inclusion and independent living. An inspiring real-life story of grit and determination. A story that you need to hear in her own words.

8th March 1982 The day I, Anupama, who was just under 2 years of age was diagnosed with severe to profound sensorineural hearing loss. I would need hearing aids and immediate speech and language inputs to enable me to listen and speak - but only in one language! With no history of deafness on both sides of the family, this information was a shocker to the whole family. I believe it was very difficult for my grandparents on both sides and even my father to believe or accept this diagnosis. My mother said she felt numb, but firmly believed that I would learn to speak and learn in English; as higher education was much better in English medium. She decided so as she had no exposure to a speaking deaf person, or having known any deaf person who had done a decent amount of mainstream education! I was promptly fitted with a body hearing aid which apparently, I accepted very well; and given intense sessions of speech therapy for a month after which we went back home to Cochin. Not finding any good service in Cochin, we went back after a few months to the audiologist cum speech therapist at Chennai. We were informed about Balavidyalaya then – a school for young deaf children. Soon, my mother and I moved to Chennai, so I could attend Balavidyalaya. My father had to continue to work in his family shipping business in Cochin. I believe this was a traumatic experience for my mother, having to live by herself while dealing with the whole idea of disability – and even having family and friends blaming her for breaking up the family, as they did not believe that anything much could be done for me! That was a turning point in our life...where my mother and I were trained intensely to not just help me listen and speak using hearing aids (no signing at all) - but also get a deep understanding of everything happening around, along with reading writing and math. This training enabled me, like all other children trained at Balavidyalaya, enter mainstream school after 4 years of intensive early intervention. I don't remember if I ever felt any different from other children and had a happy childhood both at school and at home. I lived in an apartment filled with children of all age groups and we would play from afternoon till late evening. I joined Chinmaya Vidyalaya Chennai, at age 7 in class 2. From being one among many with disabilities – I was the only one with a disability there! I was curious about the new school.

“How different is it from Balavidyalaya?” I was eager to learn and soon made many friends. Being quite a tomboy, I even gained a bit of a reputation as a bully among the boys!! Looking back, I think I had wonderful teachers, and a very good support system. I don't remember feeling out of place and was very happy. While at Chennai, my mother and I went for lots of cultural programs, and crafts and book exhibitions too. Sadly, living in Chennai was to be short-lived. A year later, we went back to Cochin and were now finally together as a family. However, I felt lonely and missed my friends back in Chennai since I didn’t know anyone beyond my grandparents and a few cousins. Cochin was a huge culture shock for me after Chennai. I joined Naval Public school in class 3 and was there till class 10. I had a difficult time adjusting. The children would whisper behind my back or make fun of me and my hearing aids. Most teachers wanted nothing to do with me and I had very little support. They weren’t aware of a deaf person’s needs. I felt an "outcast" in my school. Thankfully, I remember having at least two-three friends and two teachers who were nice to me. The others took time to accept me socially. At school, I took an active part in basketball, volleyball, sports, art, dance and home science. I believe my mother was as distressed as me about the schooling system. I also struggled to read, write and comprehend math. That made my parents search for the reason at many institutes in India. Finally, it was at Boston Children’s Hospital (after my class 10) that I was diagnosed with severe learning disorders as well! Even as a child, I apparently showed a great interest in art and cooking. I was given a lot of opportunities to explore those areas and that helped me later in life. Meanwhile, my mother had trained to work extensively in mainstream and special education. She constantly updated her skills on the latest methods of teaching and learning, and this made her look for a better system of education for me. This is what took me to The Valley School (a J.Krishnamuthy school) in Bangalore for my 11th and 12th. This was my first time away from home – in a boarding school. I was tense about the move. “Would I be accepted socially with my hearing disability?” I didn't have to wait long to find out, because everyone - children and teachers accepted me as I was!! I made friends easily and teachers were equally friendly and helpful. Being among people in an environment with a positive attitude and outlook helped me gain confidence in myself, and become independent; even though I was far away from home. I had lots of opportunities to go on treks - even one to the Himalayas, participate in sports and games, dance etc. One year I was judged the person who read the maximum number of books from the school library! After my 12th, I joined Srishti Institute of Art Design and Technology, Bangalore, where my skills were considered better than that of the others. I was asked to skip the first year and join the specialization year in Fine Art. I however, switched to Textiles after a year and graduated with Distinction. I also won an International award for designing for an airline company during my college years. Srishti did not have a hostel, so I had to live on my own in an apartment. This was a totally new experience - managing a home while studying, travelling by bus, negotiating traffic on the roads etc. on my own along with my hearing difficulties. My mother was with me for about 3 years as she took up a job there. After which she went back to Cochin and came only for about 2 weeks a month. I made good friends among the students, as Srishti had less than 100 students then. I got along with the teachers too and had the privilege of good exposure through field trips, as well as first-hand experience and knowledge from artisans, designers and design companies. After graduation, I spent about 6 months looking for a Post graduation course or a job. I had a several offers from Delhi, Bangalore and Chennai. I chose to work in a start-up in-house design company - Purple Orange in Bangalore; as I was familiar with the city by then. My designs were featured in Elle India magazine. However, I left after a year due to the hostile environment created by a few people there, by not accepting my disability, claiming that I was pretending to be deaf; as I spoke and listened (with aids). I still could not speak well on the phone as I needed to see the person speaking, to lip read. By then, I was all set to go abroad for my MA; and went to Birmingham University (UK); to do my Masters in Textiles and Surface Design. This again was a totally new experience for me, living in a new country, so far away from home, and having to manage my studies too. At college I had some help with a note taker, as well as counselling support that helped to some extent. I however got chicken pox in my last semester and that took me 2 years to complete my MA; as I had to go to India and return for the final semester the next year. While at University, I took every opportunity to visit places in the UK along with college groups and made many friends. I also worked at a movie theatre. For a movie buff like me, this was the perfect part time job. Marriage to Rohit in 2007, got me a new family that welcomed me as their own. We moved to live in the Netherlands, where Rohit worked. I was lonely for a while, and struggled to make friends as the main language was Dutch. I later found a job at the American Women’s Club in the library. I also helped design some posters and baked for their charity events etc. - where my cakes were always a hit.

With the happy arrival of our twin children Kabir and Aarya, (who are now 4 and a half years old) – life has became fuller, and also tougher. While my friends in India may have just one kid and several maids to help apart from their parents close by, I find myself alone, with very little help.

Often, I feel exhausted both physically and mentally not just because of having to attend to all the needs of the family, but my disabilities too, that makes it tiring for me to listen as well as process information all the time. Recently, I have made some more friends here and that makes me happy. My mother and I have the following messages to people who read this article – - Every child with disability can have a bright future, if their disability is found out early and intensive intervention is given - Many disabilities are not visible, but please don’t ridicule the person because you can’t see the disability. They struggle very hard to make sense of their world, and manage their life. - Please be patient with them, accept them for who they are, and give them opportunities to do the best they can.

Thank you, Anupama for sharing your inspirational story. Your mother and you are truly women of substance. For more from inspiring mothers like Anupama, follow the Times of Amma on Instagram and Facebook.