Excerpts from an interview....
1. What inspired you to start JOSH foundation along with Dr. Jayant Gandhi? How does your organization empower the hearing-handicapped children?
In the year 2003, my colleague, a trustee of JOSH Foundation and a renowned ENT surgeon Dr. Jayant Gandhi, happened to visit one of the residential special schools for the deaf in Gujarat. It is being managed by a trust with the help of Government grants. To our surprise, 350 children were managed by only 4 teachers and some care takers. There was no stimulation. Throughout the day, we saw all the children singing national anthem with different gestural languages. These children were not having good quality and technology based hearing aids and were not able to develop their speech in the absence of good hearing. This scene literally brought tears in our eyes and really touched our hearts. On returning to Mumbai, we decide to start a movement to create awareness, educate and empower the hearing impaired children and started activities under the banner of JOSH Foundation.
All the hearing impaired people always have some residual hearing, we have not come across any patient who has no hearing at all or has complete deafness. If we detect the same in the children at the early stages of their lives, with the help of right technology and proper rehabilitation programmes, we can make these children near normal in hearing, speaking as well as education. We can really empower them to be independent and live their lives without anyone’s support.
2. Being an Audiologist and Speech Therapist, what inspired you to dedicate your life and career to the improvement of the hearing impaired in India?
As a professional, I got the opportunity to work with technology and travel to different countries. What I found that, they are much more advanced in terms of technology and overall awareness with the hearing handicapped. In fact, the most important amongst all is the early detection of hearing loss (almost during the first few weeks of the birth). They have set protocols and the Government also supports them very well. These real life experiences inspired me to make use of my knowledge and experiences to put into practice for my own country and for my own people. I feel blessed that I have a profession where I can do my work and serve the society as well.
3. You have dealt with a lot of cases right from new born infants to grown up teenagers who have hearing problems... How has the exposure and experience of children with the hearing impaired changed you as a person and as a mother?
Looking at their handicap, I always tell myself that in spite of a few personal shortcomings, we are really blessed to live a healthy and normal life. These not only make you humble but make you appreciate the efforts and hardships of the parents of these children. It motivates you to be a better mother and a good human being and I always try to pass on these values to my children too.
This also makes you realize how important the use of hearing and language is, in our day to day lives. Use of good communication skills is very important for one’s overall growth.
4. Any notable or emotional experience that you have had with children that you would like to share with us?
I would like to narrate a case of a hearing impaired child who was brought to me when he was 13 years old and in his adolescence phase. He had migrated from Bangalore to Mumbai. He was totally depressed and frustrated as he was not able to adjust himself in the new environment, not able to communicate with other students and make new friends. Since he had a problem with his hearing, he was blaming his parents for his present condition. We counselled him and convinced his parents to provide him a technologically good hearing aid, best suited for his hearing loss. After fitting the new hearing aids he started performing well in his studies and made improvement in his overall performance that boosted his confidence. Today, I can say with full satisfaction and pride that he not only completed his graduation but also went abroad for higher studies, obtained his Master’s degree and has settled there now and living a very happy life. We have many such instances and these experiences really boost our confidence and motivate us to work more and more for the upliftment of these special children.
5. This year's World Hearing Day's theme was 'Hear the Future'. What do you have to say about the current situation of the hearing impaired children in India?
Out of the 120 million population of our country, 6.3% have hearing difficulties and out of that, 60% are kids. Out of that, only 5% of the population are getting correct treatment and eventually become independant.
Instead of treating the rest of the hearing impaired people as a liability to our country, we should work towards creating awareness and with a dedicated approach we should work towards converting them into useful assets of the society.
6. How can one make listening safe? Any tips on how to deal with children who have a hearing problem or have lost their hearing capacity?
Anyone can have less hearing because of wax or middle ear problem, cough & cold, and sensory neural loss. Wax i.e. outer ear problems and middle ear problems can be treated with medication and surgeries. However, sensory neural losses can only be treated with hearing aids or cochlear implant surgeries. These treatments can be given according to individual requirements and cannot be done across the counter. It is a process one has to go through. With right diagnosis, right technology, proper rehabilitation - and a right mix of this entire process, one can produce wonderful results.
Hearing and listening are very important for communication. We must know how to take care of it and prevent any damage to it. We take utmost care and due diligence in investing in technologies for TV, mobiles and other electronic devices but ignore them while investing in right hearing aids to overcome our hearing disabilities, which can actually change our lives !!!
7. What role does sign language play in the life of hearing impaired children? What were the challenges that you encountered while interacting with children who have impaired hearing?
Unfortunately, there is no standardized sign language in our country as we have so many languages. It is more of a gestural language what we use here to communicate. As I said before, we have not come across anybody having complete hearing loss, so we train all our children for aural rehabilitation so that they learn to talk like us. Principally, we are against anyone using sign language to communicate with deaf children.
Generally. a normal child starts speaking at the age of nine months. Till then they listen to your voice and we try to teach them about emotions, gestures and feelings. So for deaf kids, when we fit them with hearing aids, it’s like their birth and we feel like parents. We need to talk to this child for at least 6 to 9 months and give them inputs so that he listens and understands and expresses himself/herself. We have never had any difficulties as such to communicate with them as we feel it’s our duty to teach them language first.
8. How do you plan to take your initiative of making ''impaired children an asset to the society'' forward?
I feel we have the potential and skills and we have generated results, and with the right support and awareness among others, we can change lives of the hearing-impaired in India and abroad. One needs to have a correct vision and mission and works towards it with a pure heart and honesty. Nothing is impossible, the word itself says ‘I m possible'!
9. You have adopted a few schools in Mumbai and Gujarat... How has the Government and school organizations supported you in your noble endeavour?
We have supported many schools in Mumbai and Gujarat. Earlier, they were reluctant to change methods of working with the hearing impaired children but now having seen the results, we are getting a very good support from the school management. We have started sports education in three deaf schools and now after a few years of seeing results, two schools have started on their own to contribute to this program and adopted it as part of their curriculum. Also, earlier they used to take donations for hearing aids as per the donor’s wish, but now they convince and request the donors to donate as per the child's requirement.
Because of good technology and rehabilitation efforts, students have started hearing well and it has made the teacher’s task easier and they are able to do more and more of creative activities along with the children. They are now more willing to participate in science exhibitions, dance competitions and it has also increased the confidence of kids, teachers and parents.
10. About one in five people in India have hearing loss. Still many do not know about Audiologists. Why should one choose an audiologist over a General Physician?
In society, every individual has their own tasks. We do specialization in audiology, speech therapy and voice therapy. We have been taught and trained in our field in depth, and that too scientifically. Like in any other field, including medicine, there are specialists for every activity. We are those specialists in the field of audiology and speech therapy and we are more focused in this field and get constant updates by way of medical generals, seminars, conferences and on-the-job experiences. Such an access may not be possible with a general physician.
11. What's next for you and JOSH Foundation?
We wish to create a professional video on the National Anthem being sung by special children (hearing impaired) and for it to be aired on a national network of cinema halls and multiplexes.
We are also working on plans to organise a reality show on TV/social media on a global platform.
We wish to establish a State of the Art Charitable Institute for hearing impaired children, covering all the solutions under one roof (based on the model at present functional at Mainz, Germany), where we want to train hearing impaired children and integrate them in society as normal children.