Only last night, I finished reading ‘Lights Out’, a brutally honest book
by my former journalist colleague L Subramani, who has written about
gradually going blind at 18 from a degenerative retinal disease called
Retinitis Pigmentosa; and this morning, I have this sudden desperate
desire to speak to him. I manage to get his number from a common friend
and call hesitatingly; it’s been 10 years and I am sure he has forgotten
who I am. “Hi Mani, I’m sure you don’t remember me,” I begin. “Hey
Rachna!” he cuts me short, and a smile touches me all the way from
Bengaluru. “Of course I remember your voice. I used to like it.”
Mani
Photo Credit to “Naveen Kumar”
If I don’t mince words with politically correct phrases; I can tell you
bluntly that Mani is completely blind. He wasn’t born that way but
that’s how he was when I met him in ‘Deccan Herald’; walking around the
office with a cane, running into furniture sometimes, cracking jokes,
editing reports, sharing coffee when the evening kapi cart came rolling
down. Oh yes! Even accidentally sitting on a skinny young intern’s lap
once (an incident that alarmed him more than it alarmed her). Tall,
broad shouldered, gentle and soft spoken; slightly bent and with a
hesitant walk because he was extra careful about not walking into
something or someone; that was Mani as I knew him.
A little later into the conversation when I pull his leg about how he
couldn’t possibly have recognised my voice after all these years, Mani
tells me I’m wrong. “For me, hearing a voice after 10 years is just like
seeing an old friend walk down the road is for you. It might have aged a
little or acquired a new texture and tone; but unless it has changed
drastically, I will recognise it.”
*Mani’s story*
Read his book and you will know him better than my article can tell you.
It’s the amazing story of a kid who faced impending blindness with grit
and, more importantly, came out of it with his dreams, his zest for life
and his sense of humour intact.
At 15, as a young schoolboy who was called four eyes by his classmates
because he wore glasses, Mani couldn’t believe what his ophthalmologist
told him gently after a routine check up: that he would be going blind
slowly. It might happen in a year, or two or more, but it would happen.
His mother’s faith in God’s curative powers had Mani being made “to beg
for forgiveness and be cured” by astrologers, swamis, godmen and even
rolling in a wet dhoti at the Kannudaya Nayaki temple of the devi who is
believed to be the protector of eyes.
Nothing worked. He slowly started having flashes of blindness –
sometimes on his way to school. Once when he was getting in a cinema
hall with his classmates for a film show and once walking back home from
a temple after dark. As his eyesight slowly started failing, Mani
underwent a terrible phase. He would see flashes of light and then
complete darkness. His vision was blurring. He started losing
confidence. He would walk with a stoop, so that if he fell he wouldn’t
be hurt so badly; he would go around with knees bent in apprehension,
fearing he would bang into something; he would live in constant fear
that his eyesight would go completely. “If anyone had told me earlier
that blindness would come as a relief, I would have laughed at him. But,
at that time, anything seemed better than this hell,” he says,
confessing that he welcomed his blindness when it finally claimed him at
18 years of age. And that is where Mani’s book ends; but if you ask me,
that is where his real story began.
*Zero technology days*
Mani
Photo Credit to “Naveen Kumar”
Mani tells me that when he started looking for a job, the top option for
him was to become a telephone operator in a bank. “It was a popular
career for blind people since it gave you a regular salary though there
would not be any promotions. For me, it was completely uninspiring.” A
chance to edit documents translated into English from Japanese came his
way since he knew Japanese, but it was boring too. “My trip in life
wasn’t about earning money,” he says. Sports journalism was where his
heart was set but the first question editors asked him when he went
looking for work was: How will you do it? It was a difficult question to
answer but eventually he showed them how.
Right from 1998, when he first went looking for a journalism job, all
the way to 2003; Mani worked without any accessible technology. He would
sit at tennis matches and ask for the shots to be described to him. “I
could hear the ball. And since I had seen tennis in my school days I
could visualize the shot when someone said it was a forehand cross court
or it was a drop shot, I already knew what these were, and it was easy
for me to file reports.” When he started reporting hockey, it was an
even bigger challenge. David, who used to report sports for the ‘New
Indian Express’ encouraged him to do it. “He suggested I bring an alarm
clock to the game and set it for 45 minutes when the game started. When
a goal was scored I would ask the exact time and the number on the
jersey of the player who has scored it. Since I knew who was playing at
what number, I could file my report easily.”
In the year 2000, Mani started working with Chennaionline.com as a
sports reporter and they were paying him well. “I was so rich that I had
a chauffeur driven bike. I employed a guy who would drive me around, I
would ride pillion; he would also key in my stories,” he laughs
heartily. And then came JAWS, which was Mani’s first brush with
technology that would change his life forever.
* How technology liberated him*
Mani had his eyes set on a screen reading software called JAWS that
could read out from a computer screen. He asked a friend who owed him Rs
3000 to fix a speaker to his computer. He didn’t have $1300 for JAWS
full version and the free demo version he had downloaded would stop
working in 40 minutes. Each time, Mani had to save the work and restart
the system to make it work again. Around the same time, Shantha Kumar,
Editor of ‘Deccan Herald’, offered him a job. “That was when my brother
L Prakash, who worked in Japan, wired me the money to buy the full version.”
Mani’s dream of becoming a journalist had come true. Over the years,
technology has been a great liberator. It has made information
accessibility and gathering completely free. Gone are the days when he
would have to depend on another person to even read a book to him. “I
would have to see if they were free, wonder if I was hassling them, and
try not to disturb them on a Sunday. Now all that has completely
snapped. The internet has put books, magazines, newspapers in the public
domain and I can read these on my own. In fact, I recently read
‘Treasure Island’, along with my daughter. I got an iPhone copy while
she read her paperback,”
He uses an iPhone, which is a perfect gadget for the visually
handicapped. “It has an inbuilt screen reader. If you go to settings,
and chose accessibility, your cell will start reading to you. That’s how
I read books on Kindle, or NDTV or newspapers.”
Another app that Mani swears by is TapTapSee which helps the visually
impaired identify objects they encounter in their daily lives and become
more independent. Designed specifically with blind people in mind, it
allows the user to click quick photos and then describes these
accurately. If you take a picture of your dog it will tell you that it’s
a big and hairy German Shepherd; if you take a picture of your fridge
rack it’ll tell you where the milk is and where the beans are. Mani says
he uses it in press conferences; the phone acts like a sighted friend
and describes the man sitting at the table. The iPhone even has a KNFB
reader. Open the app and it converts the phone into a scanner, so if
someone hands Mani a visiting card at a party, his smartphone reads it
out to him right then.
*What never changed…*
Mani lost his eyesight 24 years back. Sometimes, he says, he has dreams
where he is walking down a beautiful green slope and he can see; after
he wakes up he remembers it is a scene from a trip he had made to the
Sabarimala temple with his uncle many years back that still remains in
his memory. “At those moments, dreams and reality merge,” he says wistfully.
“An advantage I have over people who are born blind is that I have
images in my mind that I can fit into a framework. I understand what
words like wince or blush mean. If I didn’t have these memories, I might
have still been technically sound but I couldn’t have been a perceptive
writer. But then I could see once and now those people never age in my
mind. My mother is 65 now. She often complains that she is getting old,
her skin is sagging, there are wrinkles lining her face; but I tell her
that to me, she will always be 40, which was how I last saw her,” Mani
smiles. “Some things will never change for me.”
L Subramani is a senior sub editor with the ‘Deccan Herald’. He was
affected with Retinitis Pigmentosa at 15 and had to experience gradual
loss of vision in three years that left him totally blind. He is
currently involved in setting up a support system for patients who
experience progressive or sudden vision loss. A part of his book
proceeds go there. You can buy book here <http://bit.ly/1lVtnM1>:
Message from Mani: If you are someone who needs personal help to cope
with blindness, a little friendly chat about things that bother you or
just an ear to listen to your fears and frustrations, please don’t
hesitate to get in touch. I’ve been through that and I can help. Just
leave your questions and if you don’t want to give your name, that’s fine.
Contact Mani at: [email protected]
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