This blogpost is written by L Subramani, who is a Journalist with the Deccan Herald. He authored his first book Lights Out in January 2014. Subramani started losing his sight at the age of 17 and by 18 he was completely blind. His book is a blow by blow account of his vision loss. This is the first guest post by Mr. Subramani and the first ever guest blogpost on Eyeway! Please note that Eyeway's Blog entries reflect the opinions of the author and contributors, meant to encourage debate and discussion, and not Score Foundation's official policy position.

 

You may have read plenty of books about loss and recovery, and even about disability. All of them, such as ‘The Story of My Life’ by the great Helen Keller, tell the compelling story of a person robbed of her vital senses fighting to get even with the world.

 

Right from the beginning, when the idea of writing a book about a specific case of someone slipping into blindness due to a genetic condition occurred, I wanted this story to be personal yet not so pinned down only to my situation. Experts in the world of book publishing advised me to personalize the story so that it would touch the reader and help her understand its wider meaning and implications. I tried doing that too. But it is important to offer a glimpse of what I tried to do in the book to those who mistake it to be a mere personal account. The first word of caution would be not to compare it with Keller’s experiences or with others. Because the book is about people around me, the way my family coped with what was happening to me and the way the society around me reacted.

 

First of all, I have attempted to provide a blow-by-blow account of how it feels like when someone who never consciously thought himself as a prospective candidate for blindness had to eventually turn around and face it. Though it happened to me, I still had to go twenty years backwards to reconstruct how my own mental condition was and how it felt as the carpet, quite literally, slipped under my feet.

 

It was the struggle of my family, what it took to digest the fact of my gradual vision loss, how they adjusted from chasing a non-existent cure to providing rehabilitation and how, at the end of it all, the dream of a positive future wasn’t lost, but adjusted to suit the altered condition.

 

I wanted to project my family as a model family not because they were different, but actually because they weren’t. Of course, they quickly made the necessary course correction to ensure my life did not nosedive into the ocean of disillusionment.

 

Nearly two decades later, as I became a volunteer to help patients going through gradual vision loss, it was shocking to note how their families reacted more or less the same as my own, and failed to make the course correction. Their belief that a cure existed somewhere was typical. They took refuge in religious rituals, not to seek peace or strength to accept what is happening, but in the belief that they would save them from blindness. Most of such families believe that hope lies in curing the condition when no cure at home or abroad exists for retinal degeneration. It is important, and even urgent that those families and individual patients got down to the course correction before it’s too late.

 

Which takes me to the second important reason for writing this book: lack of awareness. Of course, all of us know about blindness, but the problem lies in what we know and how well we know. For most of us, and I include myself because until it happened to me I wasn’t any different, blindness was more a ‘black and white’ thing. On one side there lived those with perfect 6/60 or 20/20 vision and on the other side lived those in total blackness on account of their blindness. This may not appear far from the truth, but like any truth, there is a good bit of grey in between that skips our attention.

 

Lack of awareness is hurting retinal patients more than ever before. Most of them are either excellently qualified for jobs or have potential to excel in fields of their interest, but all they get from people around them is discouraging remarks.

 

“That’s not meant for blind people like you,” “You can’t do that,” “be realistic,” and so on. While many low vision and blind persons would have believed it in the dark ages of pre-technology era, they feel let down and cheated to hear such things now. After all, they know they could accomplish largely the same things as a sighted individual with the help of technology these days. They have NGOs training them for different jobs, have the law favouring their employment, and still find it harder to stop the doors to offices from slamming on their faces.

 

Lack of awareness, and, as a result, lack of opportunities to study or work, has serious implications for our workforce and economy at large. It is estimated that India has 77 million visually challenged persons, and, if you care to ask social workers and those who know the population closely, they would say that these are far from real and actual figures. Though it is not big enough, that 77 million is the most hungry, most dreaming and, I dare say, the most talented section of our population. We are unable to tap into that talent because our system refuses to accommodate them. The system thinks there is nothing wrong with it and everything is wrong with the disabled.

 

Changing such a system is certainly not in the hands of a single man or his story, but if a spark is all that is needed, I was glad to provide it through “Lights Out”. May be, one man’s lights out could reveal the inner lights of many.

 

** The Kindle edition of “Lights Out” is available at amazon.in. Right now downloading the book on to the Kindle App and reading it on the smartphone is the only way it is accessible. However, efforts have been made to get an audio version soon for the benefit of our visually challenged friends.