“What lies behind us and what lies before us are tiny matters compared to what lies within us.” One realizes the truth of Oliver Wendell Holmes’ words only later in life. This I can say today, when I am 58+ and have been living life on my own terms for quite some time now. I am Sharmila Divatia, a survivor of encephalitis, a viral brain fever that I contracted in June 1970.

I was born in New Delhi in September 1964, and raised in a joint family, had a lovely childhood, a great school, a lot of friends. We moved to Baroda in April 1970 since my father had started work there. New school admissions for my brother and me were sought and gained and we joined school on 15 June 1970. The next day I came back from school and went to sleep, and went into convulsions and coma. I was rushed to hospital and was diagnosed as suffering from encephalitis. It was a full four weeks later that I regained consciousness. I am not aware of the trauma, though I can only guess at it, that my parents underwent during the period.

Though my life was saved, the virus took its toll. I lost motor control of muscles on the left side of my body; I could not talk, see, hold or walk. I remember trying to get off the hospital bed and falling. It was a terrible shock to know that one could not walk. But I was determined to not let nature take its course. It took years of extensive therapy before my speech was coherent and months before I could walk straight. I still have spasticity in my left hand and my speech is affected and these shall remain. I have cerebral palsy as a residual effect of the virus.

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Every year, the United Nations observes 3 December as International Day of Persons with Disabilities (IDPD). One of the challenges that Persons with Disabilities (PwDs) face in our society is communication. PwDs have certain limitations as they are unable to communicate like abled-bodied persons. We need to accept and learn their language like Indian Sign Language (ISL) for the Deaf, and Braille and Video/Audio description for the Blind. They are human beings and embody the presence of God. 

We need to join hands with persons with disabilities (PwDs) and organizations. To begin with, we need to respect them in the usage of language, especially when we address them through text or visuals in social media or mass media. Quite often, a person who is hard-of-hearing is called ‘mukh’ or ‘gunga’ in our local language, in both print and digital media, which dehumanizes them in our society. A deaf person cannot hear, but if given assistive devices and trained, they can speak or communicate through sign language. We become disabled when we are not able to communicate in their language for providing information, education and entertainment. Hence, it is important to accept their language and accept the person or the PwD. This means we have provided accessible language to PwDs.

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