Helen Keller has famously said,
Blindness separates people from things; deafness separates people from people.
I am Jasmine Shah and I am a survivor of a rare and unique syndrome known as Usher syndrome. You ask me, what exactly is it? Well, it is the condition in which a person losses hearing capability and also gradually losses eyesight. This is what I went through and this is my story.
I began loosing my hearing capability from the age 11 and became completely deaf by the age of 16 years. Then, my father went through a lot and invested enormous amount of effort to make sure that I complete my schooling. By 18 years of age, I lost my eyesight and it became extremely difficult for me to communicate with anyone. Ever since that day the only thing I am doing is trying to regain what I lost, my power to see, appreciate, hear, understand, and feel.
This fight and struggle went on till I turned 32 years and then I got implanted with Cochlear Nucleus implant performed by Dr. Kirtane at the Hinduja hospital. This implant basically restored my sense of hearing. This implant changed everything in my life, gave my life a new meaning and purpose, and allowed me to reconnect with the world around me fully.
Today, I stand here with my disabilities long gone and I am a diligent home-maker, they say I am a caring wife and a doting mom. Now, I attend my daughter’s school meetings and also take her out with friends. I have many hobbies and I do them all, like watching stage shows and watching all the latest a well as classic movies. I am trying to catch up with all that I missed in all those years. I also have an active social life kitty parties, going out, and also I love reading my original shayaris to my friends and they appreciate them a lot.
To tell you the truth, what I cherish the most after all my turbulent times is when my daughter calls me ‘mamma’ every single day. Every time she says ‘mamma’ my eyes light up and I feel the luckiest to witness this miracle.
I suppose or rather for me, the sense of hearing is unequivocally more important than the sense of vision. The gift of hearing helps me to connect and communicate with my beloved daughter and my surrounding universe every moment of her day!
If I will have to put my deepest feelings in words than here it is.
काख अंधेरों पर
एक सूरज ही भारी है
मुसीबतों से जीता वही
जिसने हिम्मत नहीं हारी है
The story of Jasmine Shah opens our eyes to some startling facts and figures related to hearing loss. In India, out of the 5 senses vision is considered to be the most important sense, but scientific evidence says it is the loss of hearing that impacts the most as it can hamper mental as well as social development. In fact, children born with hearing loss are prone to more severe consequences. Children born with hearing loss has problem developing speech and language abilities. This puts the child in a disadvantageous position in school, society, and also limits the future prospects.
The severity of hearing impairment in India can be understood with these shocking statistics.
# Every year, 1,00,000 children are born with hearing deficiency.
# 4 out of every 1,000 children suffers from severe to profound hearing loss.
# More than 6.3 crores people in India are diagnosed with significant hearing impairment.
In some cases, these figures are comparable or ever higher than the figures of diabetes and cancer.
To detect hearing loss in children at the earliest possible to be able to treat it properly, each of the child should be screened for possible hearing loss at the birth hospital itself. This is a strategy which is being followed by countries like USA, Australia, UK, Singapore and many other countries. But, India still lags in following any such specific program, only a handful of private hospitals have this facility to detect and cure.
The Government of India, in the year 2006 launched National Program for Prevention and Control of Deafness. This 12 year-long comprehensive plan along with couple of other measures, like signing of the United Nations Rights of Persons with Disabilities convention (CRPD) in 2007, have definitely further signifies the importance of hearing loss. However, adopting and signing are the easy part of any policy, what is challenging is implementing and executing them.
At present, India lacks in adequate health care facility, counselling, self-help, rehabilitation; even if these facilities are available they are either inaccessible or unaffordable.
In such a situation, the best one can do is to gather possible information about hearing loss, know what health care facility is available within reach, and remember that hearing loss is treatable.