Aside

Commander cool

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It was 1981, or so I think, when I was about eight. Mom and three of
my siblings were returning from a visit to our grandparent’s house,
about five stations away from ours on the suburban train in Chennai.

It must’ve been a good visit. Grandma used to offer me sweets that I
greatly enjoy eating like ‘Thiruttupal’ or ‘pal kova’ (milk sweet
variety).

I don’t remember how the evening went on. The mental video screen
cliks into action from the time we entered the underground road
crossing and emerged on the other side after exiting the suburban
station on our side.

The sidewalk was encroached and whatever space left for the
pedestrians was too narrow that it was a struggle to walk free for
more than two steps. Mom carried my baby sister. My two brothers were
walking forward and laughing at something that amused them. In those
days, almost everything from a smooth brown pate of a balding man to a
monkey dancing to his master’s tunes amused them.

The street lights suddenly blinked out, plunging the sidewalk into
complete darkness. Light from the hurtling vehicles would momentarily
illumine the sidewalk and recede until the place became dark again. It
felt as if we were walking through the flashlights on a dance floor.

Something hit my eyes. The blow was so strong and painful that I
nearly fainted. My loud cry froze mom and the two little boys walking
in the front.

The blow shocked and pained me into stillness. Though my lungs
gathered air and mouth worked to produce the loud cry, I stood still
like a freshly made iceman. The hand I pressed to my left eye felt
sticky. Liquid Dripped between my fingers. And in my shock, I failed
to realise that I was surrounded by complete strangers.

Mom separated the men and knelt before me, still carrying my baby
sister in one arm.

To her great relief, the cut was on the brow. She spotted the wooden
slab covered by a sheet of tin with sharp edges slanted down from the
wall. Lottery tickets were clipped on a series of ropes running across
the slab. I was walking too close to the makeshift lottery stall and
the slab was low enough to hit my eyebrow.

Someone produced a glass of water or juice or something. Another hand
thrust a strip of bandaid on mom’s hand, which she gratefully stuck on
my bleeding brow.

It was a lucky escape alright. The blow missed my left eye by a few
inches. And what if the long and heavy slab unhinged itself from the
wall and crashed on my head?

But when I think of that incident, I wonder what would’ve been running
in mom’s mind? She certainly wouldn’t have thought about the glory of
motherhood or, as a Tamil saying goes, feeling rich with the wealth of
children around her.

But I know she wasn’t questioning the wisdom, or the lack of same, of
having four children, or blaming her husband for not being on her side
when the need was so great, or blaming us for being who we were. She
acted like how every commander would act at a sudden enemy attack.

Alas, no mother in the world wins the bravery medal.

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How do I handle my gradual vision loss? (part 3)

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3. Don’t feel shy about using your white cane.

On the sunny evening, the room where I stood looked shadowy. The lady standing before me watched the mortified expression on my face with a
mixture of amusement and apprehension.

She was shaking hands with me just a minute before, trying to
demonstrate how I should hold the handle of the white cane. “Just the way you shake hands. Just grip it. That’s all,” she said.

“Here, take this and hold the way I showed,” she told me, extending a brand new white cane. That was when the real horror of the situation hit me hard. I realised for the first time that my blinding condition would no longer be a secret. The moment I carried the white cane, I’d unwittingly advertise my blindness to every stranger and run the risk of being regarded with pity, the one thing every blind and visually impaired person loathes.

I shook my head vigorously and gave back the cane to the instructor. It was I who forced mom to take me to the YMCA to learn mobility with
white cane. But she was confused watching me give back the cane,
obviously not wanting to learn.

The instructor, Mrs. Sahai, wasn’t surprised at all. “He’ll come back
when he understands the need for white cane mobility,” Mrs. Sahai said, giving an affectionate pat on my shoulder as we exited the office room of CBM at YMCA in Chennai/Madras.

Sure enough, I did go back to learn mobility three years later,
because mobility was inevitable to everything I needed to do, right
from commuting on my own to handling myself at workplace. The first
thing every prospective employer asked me was: “Can you commute on your own?” Desperate to beat the odds and land the job, I wanted to say “yes”, but couldn’t do so with honesty.

I learnt the basic concepts of white cane use, but it wasn’t until
2004 I could hone my cane skills, when I visited the National
Association for the Blind-Karnataka. Having convinced my present management that I could work effectively as a journalist despite the obvious limitation, I first visited the sprawling campus of the NAB-K in Bengaluru. There, I was acclimatized with the techniques by the best in the business, the team led by Mr. Jaikumar and Ms. Shobha, ably assisted by Mr. Mohan Naik, Mr. Ramkrishna and Ms. Lalitha Kumari.

It was in the streets of Bengaluru that I first wielded the white cane and walked alone. The experience was liberating. I was the least bit embarrassed about advertising my blindness, but rather felt the air of freedom and confidence for the first time.

Such was the level of my confidence that I began long journeys all alone. I could fly at the time when flying was relatively a new concept for the blind and the airlines was posing additional barriers by refusing to board us. I continue to visit my hometown of Chennai all by myself in the relative safety of air-conditioned rail cars.

White cane mobility is the most emphatic message you can send to your family in terms of your independence. IT’s the best answer to the sceptics among your family and friends who’re not aware that there’re ways to breach the barriers blindness is posing.

Besides bolstering your confidence, walking with the white cane also allows you to find out ways of observing the immediate environment. You learn to process sounds and smells. Like a ballet dancer, you learn to coordinate your movement to the constant flow of traffic and pedestrians. The luxury of passing through the same roads, intersections and sidewalks would give you an intuitive understanding of the obstacles and ways to tackle them.

For those suffering gradual vision loss, white cane mobility is the first and the vital step to restore the lost confidence. It’ll help alleviate the initial trauma. You’d learn to tackle challenges blindness poses with less anxiety and with the assurance that you can crawl your way out of tight corners.

Aside

How do I handle my gradual vision loss? (part 2)

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2. Try for a cure, by all means, but don’t postpone rehab.

 

Should I try for a cure?

 

 

This question is probably the upper-most in the minds of many facing
gradual vision loss. All the family members, friends, the most distant
relatives and even casual acquaintances over a train journey would wax
poetry over magical cures from masters of alternative medicines.

Now, don’t get me wrong on the alternative medicines. I believe the
host of them –such as the Indian systems of Ayur Veda and Siddha—are
an excellent ones for a host of ailments like asthma. But the extent
to which they work on genetically impacted conditions like Retinitis
Pigmentoza largely remain in the unknown zone.

Hope of cure is not entirely lost as several medical research groups
across the world are working on cures, which, given the complexities
of the region of the eye we’re talking about, are complex and
consuming more money and time than any single organisation can afford.

The point that I’d like to emphasise here is about rehabilitation. No,
you don’t have to give up your hope of a cure and the ability to see
clearly one day, but that can co-exist with adjusting yourself to the
sight loss and improving your quality of life.

What could come in the way of people accepting their blinding
condition is shame.

Learning to use a white cane to move around, organising things for
your daily use at home and even learning to perform tasks like cooking
are part of the rehabilitation programmes offered around the world.

Most who’re going blind have a problem in using the white cane for
mobility largely because they are ashamed of holding one. It comes as
a severe blow to their self-image. Believe me, that’s how it felt to
me when I was offered the cane at a training centre in my hometown of
Chennai.

‘Why should I advertise my blindness?’ was the question I asked my
mobility instructor when she handed me the cane on a hot afternoon at
the YMCA campus where the training centre functioned.

The same thought echoes in the minds of many experiencing gradual
vision loss. And, of course, the families don’t help their cause. They
often say why they should learn to be on their own when people at home
are ready to escort them outside, cook and clean for them. Though I’m
not very sure, such a mind-set seems very common in Indian families.

What people fail to understand is that rehabilitation, comprising of
all the things that I mentioned (and probably a couple of other things
like personality development and grooming taught in some
institutions), greatly boosts the self-confidence of the individual
going blind and helps reverse the feeling of inadequacy about
themselves that often accompanies sight loss.

It’s also sad to see that many –even the most educated and savvy –
fail to be aware of the range of technology available to someone who’s
blind that allows them to perform miracles.

Say for instance, the Oober app (which is very accessible on iPhones)
allows them to book their own ride and move around without help. I’ve
done it plenty of times myself.

My question to those who think rehabilitation would somehow shift the
focus from the cure is this: why should you think rehab and cure are
diametrically opposite? Why can’t you pursue rehab to improve your
quality of life, financial independence (that comes as a result of
your ability to perform with distinction at work place) and a
well-rounded life (with pursuit of your hobbies) has to be somehow an
inferior ambition than cure?

Consider these questions, and think again.

(this series would continue)

How do I handle my gradual vision loss? (part 1)

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What does it feel like losing your sight little by little?

 

It’s more like sinking below the earth on the edge of the twilight zone.

 

Sometimes, the sights, the colors and the precise size of the objects look so wonderfully clear. And in the next minute, a hazy mist settles over the picture like powdery snow and everything begins to go out of focus.

 

There’re sudden and scary flashes as if someone had fixed a photo flash inside your eyes. And you blink, thinking that you’d see clearly, because blinking hard had worked in the past. But no. It doesn’t work any more. You come to a sudden and painful realization that your eyesight has been reduced to that misty haze where you see shadowy figures silhouetted against the expanse of a white canvass.

 

That’s how it feels for someone going through gradual vision loss. IT happened to me at my 17th year, and, believe me, I still wake up in the middle of the night, sweat trickling down my forehead, whenever my mind takes me back by twenty five years.

 

I wanted to exorcise the ghosts of that trauma, the pain and the helpless feeling, and so I wrote a book detailing everything I and my family had to face. All it did was to scrape open the old wounds and keep it raw. But I feel reliving the nightmare was worthwhile because the book helped fellow patients of Retinitis Pigmentosa and gradual vision loss to identify with the story and talk about it more openly.

 

The one question that keeps coming back over and over again is: how do I handle gradual vision loss? My book tells my fellow patients the story of what happened to me, but sadly, it’s not an instructional manual or an academic booklet to provide readymade solutions. It’s one way they could purge their own traumas and feel strong enough to workout their solutions.

 

But as someone who had walked through the fire and emerged stronger, I feel it’s important that I address the question personally with a few things I had done and things that worked for me. This is specifically for those going through gradual vision loss and how they handle their situation. I hope this is useful.

 

  1. Verbalize what you feel.

 

The most obvious challenge for someone who is going through vision loss suddenly and significantly is that people around them almost cannot understand the extent of their impairment.

 

People with Retinitis Pigmentosa or other retinal conditions can have vision loss in a matter of months or even weeks. No way would their parents, siblings or other close family would realize that something they could see so clearly just a week before is completely invisible to them now.

 

A friend of mine who studied science subjects at school had difficulties observing the plant cells on a microscope. Obviously he did that effortlessly a few weeks before and is now struggling to even fix his eye over the eyepiece.

 

He couldn’t open up to his teachers since he wasn’t sure whether they’d believe him, while he couldn’t carry on with the charade of doing his lab work any more. His inability to clear the school exam was blamed on his mental weakness. It took several years for his family and teachers to realize he was going blind.

 

So, it’s important you verbalize your condition to your family, friends and even neighbors of your colony, and the puzzled bus conductor, who like to know why you didn’t reciprocate their smile or a friendly wave or why you went dangerously close to falling over the sidewalk.

 

Some of you may be saying this’s easier said than done, but think of it. People who’re used to seeing you as a normal human being will have no clue as to how serious your problem is. Doctors can medically confirm your blindness, but for those who haven’t come across gradual vision loss, it wouldn’t strike unless you show the obvious signs of blindness.

 

(To be continued)

Aside

Dear world, the blind community is taking you by storm

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Are you one of those who think the blind are restricted because they can’t see?

Well, this post would change that idea.

For years, we’ve been saying that the blind can do wonderful things if given the right kind of tools and technology. With smartphone and social media proliferation, the evidence that the blind can do incredible things has only grown stronger.

Duffy (name changed), for instance, would have spoken about forgiveness at his local church in the United States. With an iPhone and Vorail, he shares his thoughts on the subject with the world.

Similarly, Rosy wants to know how to work on her new Mac device and Marie (all not the real names) wants a pen pal from some unknown part of the world.

It might sound like a crazy cacophony of voices and people, but Vorail is the place to be if someone is blind and wants to communicate with the world. All that needs to be done is to download the free voice-based app from the (Apple) App Stores, install and turn on the feed.

A list of questions appear on the screen and the user could listen to the answers people post by flipping a finger on the question, which also shows the option to add ones own bit to the discussion. An in-box for private messages and the option to like or mute (so that the person can’t hear ones messages or post a private message) completes the features of the wholly voice-based app.

If you’re one of those who like to start a discussion forum, and feel blessed not to hear your own voice but others, the app for you could be ‘Roger’, another free voice-message app downloadable from the App Stores.

In recent months, the two apps have revolutionized the way the blind communicate. No borders, no restrictions, and when it comes to making friends, sky alone is the limit.

While Vorail and Roger have tweaked the experience of the connected world for the blind, the process of connectivity itself has been on-going for some time.

Adrijana Prokapenko, a blind teacher from the Former Yugoslav Republic of Macedonia, hit the brilliant idea of starting an email magazine to connect the blind from across the world a few years ago. She subsequently migrated the group to Facebook, where her group currently has more than three thousand members from several countries.

Today, Facebook is awash with groups specifically meant for the blind with names like “VIP Lounge”, “Living in the dark” to “Technology planets for the visually impaired.”

What more, some of these platforms also provide adult blind the opportunity to find a suitable soul mates from across cultures and countries. Given the social attitude and restrictions the blind find in their own country, the platforms open up the infinite possibilities.

Vorail and Roger came with high recommendation from a close friend of mine in the U.S. The quality of the microphones in both the apps has been incredible. Voices come through clearly and it’s possible to picture the background environment since listeners are treated with sounds unique to the environment of the speaker.

These apps could help a person in different ways from learning to speak English clearly to get guidance on using various technologies, get feedback on apps or devices and even record a little piece of music that could be shared with everyone.

Every time I listen to someone on Vorail or Roger, I couldn’t help smiling with a sense of pride. The whole world thinks blindness is a disability that needs to be either pitied, resented or corrected. But here we are, taking a great leap into the wider world, discovering people and things that were once inaccessible and learning a great deal from each other.

With Facetime (that allows voice calls between iPhones), iMessage, Whatsapp and FB Messenger, the choices of the blind to communicate from different parts of the world has become better in the last few years.

And surely, we are making the most of it.

Aside

The man behind Hear2Read: making low-end smartphones talk in Indian languages for the blind

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Suresh Bazaj is no stranger to the blind community. A retired serial entrepreneur in the U.S. who spent his early life in Banaras, Suresh had seen blind people at a school in the old city which his family has been supporting from his father’s time. He had seen them open the bulky Braille books and let their fingers trail the raised dots to discern the words in the code.

As he prospered as an expert in computer and networking segment, Suresh was happy to send money home for the school, satisfying himself that the blind can live in their happy little world of Braille, oblivious that technology revolution sweeping the world can make a big difference to them.

“When I met computer scientists in the US who were either born blind or acquired blindness in their lifetime, my ideas began to change,” Suresh said, speaking from a clear Skype call from his home at the Bay Area.

That made him connect two very unlikely dots. “I kept wondering the life of poverty blind children in Banaras were moving towards against the tremendous opportunity technology has provided for those with similar affliction in the US. The quality of education here and in India makes a huge difference,” he said.

So, the entrepreneur in him was energized by the suggestion from renowned computer scientists in the Silicon Valley Dr. T. V. Raman that Indian blind community could use his expertise to get an accessible smartphone in affordable price. That the task appeared more than impossible did not alarm him.

Text to speech software, that read out contents on a phone or PC aloud to the blind users, has been god-sent since it opened previously unopened doors in terms of careers and jobs. With latest Android phones, the only smartphones that falls in the affordable range for the blind community, TTS is only getting better.

“It was like answering ‘how I handle failure’ to the entrepreneur in me, who wanted to have a go at this challenge no matter what the obstacles were,” he said.

“I read about efforts to fuse a brail display over the touch phone so that if a blind person touches the screen the dots would pop up and enable him to read the content. Such researches are far into the future and would cost a great deal. Getting the smartphones talk Indian languages would be a relatively achievable task,” he said.

Soon, Suresh found a team of collaborators who came up with their own contributions as volunteers.

Dr. Alok Parlikar, a student of Prof . Allan Black, the leading figure in building Text-To-Speech engines using open source tools, convinced Suresh that making low cost phones speak in Indian languages is doable.

The team soon had Dr. Sam Taraporevala, a visually challenged innovator responsible for convincing big banks into installing talking ATMs and Dipendra Manocha, the leading figure in the Indian blind community in making books accessible through smartphones.

Indians for Collective Action, a 50-year-old organization based in the Bay area, signaled its readiness to fund the project. Untiring, Suresh reached out to people in his network including friends, asking for any amount of money they could donate.

While a good many handed the cheque with a smile and wishes of good luck, a few paused to look at him as if he had lost his mind. “You know this would guzzle millions of dollars and man hours. You are an expert and you should know this’s impossible,” they would tell him.

He was even reminded that the Indian government funded Rs. 20 crore to develop a Text To Speech in Indian languages. An interview by the head of the project –where she felt confident of developing a TTS in eight years – was forwarded to his in-box for emphasis.

Suresh, meanwhile, brought in an impressive set of 50 volunteers for his project called Hear2Read. The Carnegie Mellon University, that did pioneering work at TTS development, was given the onus of coming up with the basic models of the TTS.

“Today, we have basic TTS prototypes for eight Indian languages and are on the verge of releasing the Tamil TTS,” Suresh said.

The press release he is preparing for the Tamil TTS release would perhaps reach the long list of nay-sayers who warned him of the wasted time and effort. “I hope they’d change their minds about it now,” he said.

Using two decades of work in developing TTS for European and Western languages, the Hear2Read team began leveraging the most important feature of the “Indic languages”: the phonetic similarity.

“TTS for Western languages were built using Lexicon: how the top 80,000 words are pronounced. Such a lexicon is not available for Indian languages,” Suresh said.

So, Prof. Black and his team began mapping the commonalities among Indian languages. Every Indian language can be brought down to certain common sounds such as ‘Ka’, ‘Ga’, ‘Dha’ etc. The sounds are matched with the alphabets on a table. This was the basis of Unicode made for Indian and foreign languages which many tech companies do not use.

“We developed a code that understands the commonalities in the languages and allow for exceptions. After working the ‘baseline’ that has the basic structure of the language, we work on the exceptional aspects, working in special sounds and characters such as ‘pa’ in Tamil. It’s like putting up the rudimentary structure of a house and then furnishing it,,” Suresh said.

So far, the team has baselines for Hindi, Gujarati, Marati, Tamil, Telugu, Kannada, Punjabi and Bengali. Among these, it worked out the exceptional features for Tamil alone.

“Because I could get the right kind of volunteers,” Suresh explained the choice of Tamil. “We need a native speaker speak the words and sounds clearly so that that voice could be used for the speech output. Mitra Jyoti in Bangalore provided three volunteers for Tamil, Telugu and Kannada. We are happy that we are ready with one of them,” he said.

The team had progressed from two to 50 and has ten active volunteers. But the effort is clearly not enough to fine-tune all eight languages. Besides the amount of money needed, Suresh is also looking for more volunteers who could help him take the project forward.

“Today, it’s the CMU that is putting the project together, but I’m hoping one of our volunteers would put together the project at the next stage. This’s the uniqueness of Open Source projects,” he said.

Nudged very strongly, Suresh admitted with great reluctance that neither the Indian government nor fellow Indians dropped a dime in the project. “I like it this way. Because this way, it becomes the result of my entrepreneurial effort and the efforts of my volunteers. After all, I wanted to do something to the country I left in 1971,” he said.

A year after he left for the United States, Suresh returned to Banaras following the passing of his mother. Armed with the IIT tech degree, he visited several companies where he got earful of advices about getting a Ph. D. from the US and no jobs.

“The scenario is much different today. If you are an IITian, you just have to name the price. The country has changed and computer technology has changed it,” he said, voice quivering over the nostalgia and pride.

Money is not the reward for this entrepreneur. “This’s free of course. Anyone can download the Tamil TTS after its release on August 2,” he said.

The reward for this entrepreneur, of course, is the prospect of the ten thousand or so blind students in his country of origin perusing their textbooks and study materials on a smartphone that speaks their native tongue.

He will be satisfied when a greatest barrier of gathering knowledge is removed from the way of the blind in India.

To contribute or volunteer, please contact Suresh Bazaj at: suresh[AT]Hear2Read[dot]org

You can download Hear2Read Tamil version from the Google Play Stores.

Aside

The teacher who transformed my life

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We all need a guide, a companion soul who shows up when we are at crossroads; at the moment that could turn our lives inexorably.

When THAT PERSON happens to be a teacher, it feels as if god himself is reaching out and showing the right way.

It was July 1991, a few months after my eyesight had declined to near blindness. Mom and I were exiting Loyola College with drooped shoulders and sagging spirit. Sweat glistened on our foreheads as the harsh afternoon sun sucked any leftover energy.

A few minutes ago, we were told that the last chance we had of joining the great college had slipped through our fingers due to a simple error on our side.

“You must have noted the application number somewhere madam. Please bring it and we’ll consider admission for him,” Fr. Principal had said, looking concerned and helpless.

The reality was, we submitted the application without making a note of the number. The college was receiving about thirty five thousand applications and had no way of locating an application without its number.

Mom was frustrated. About fifteen days of running around in the sun was going waste. She wanted me to attend college and get educated so that I could work and lead a dignified life. It didn’t seem like an unreasonable goal, but circumstances and the chain of events that put us on that sunny day outside the college made that goal appear far tougher than it was.

I felt a hand on my shoulder and turned.

“Hey, you look as if you don’t know me,” the student said.

“I don’t even see a smile of recognition in your face,” he continued, unable to hide his disappointment.

“His eyesight has gone so bad he can’t see you anymore,” mom explained to the student, who went back a step as if someone had slapped him.

It was my friend from school, Dinesh, who spent hours seated by my side enjoying Carnatic music compositions as I sang. We were close and probably would have ended up in the same college if not for the year I had to miss due to the diagnosis of RP and the struggles to come to terms with it.

Dinesh heard us out and needed no convincing in joining our effort to gain admission.

“All isn’t over yet,” Dinesh told us. “We’ll try one more time tomorrow.”

The next day, we bumped on another school mate pursuing bachelors in the college. Ghulam had to cope with blindness from his childhood and was equally shaken to hear how Retinitis Pigmentosa had robbed me of my ability to see.

Gulam, as someone described later, was my guardian soul, an angel instrumental in my further education and how my life went from that point.

“We’ll discuss about your admission issue with someone here. You might find help,” he said taking us along the vast corridors of the college’s main building. He turned into the room bearing the sign “Students Services Centre”.

The booming voice of Professor I. E. Daniel welcomed him. Ghulam introduced us and explained the issue.

“Don’t worry madam, we’ll try our best and leave the rest to god,” he told mom and turned his attention in my direction.

“Do you know anything you had written on the application form that’ll help us identify it?”

The one thing I remembered my aunt wrote on top of the form was the words “Blind Candidate” in block letters.

“Ok…when did you submit the form?”

I probably wouldn’t have remembered the date if not for a great tragedy that struck my country in the month of May. Our former Prime Minister Rajiv Gandhi was assassinated by a suicide bomber on May 21 closer to my city, which brought the country to a standstill. Between the time it took to mourn his death and continue the multi-phased elections,. It took a long time for college activities to resume. I kept the date of Rajiv assassination as my landmark and worked forward.

“June 3 sir,” I told Prof. Daniel with confidence. In reality, I wasn’t sure if I was right or wrong, but it felt right.

Prof. Daniel departed with a student in toe to the Principal’s chamber, explained my situation to the staff there and used the student to go through each application. It took a couple of hours, but the form was there.

With his booming voice, eyes full of affection and the spirit to help persons with disability, Prof. Daniel was the guru who showed up at the right time, a guru who removed a major obstacle.

Prof. Daniel went on to create the first association for disabled students in my college which has grown into a full-fledged support centre now. His modern and forward thinking ideas inspired us and made us think beyond the traditional jobs for the disabled such as telephone operation and teaching. Not that these are bad jobs, but some of us needed more challenging things in life and found people discouraging us all the time. He was there to urge us on and back us up when we needed help.

Aside

Inclusion in practice, not in theory

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Never in my life did I feel so awkward and…dumbstruck.

If you haven’t met me before, then probably I’ll have to tell you that it takes a bit of a doing for someone to make me dumb.

The guy in the front seat wasn’t an academic. He didn’t pose a puzzle or logic that would usually make me pause for a while and think.

Why should he do that; he was doing what he does best –driving auto, the three-wheeled motor vehicle that threads through the worst of traffic jams in Bangalore.

The question was ironical, simple and thought provoking: “You’re blind. How can you write?”

Well…When he asked me what I was doing for a living, I should’ve said I’m singing in a music band, selling lottery tickets or ration card covers in the moving train, which, come to think of it, isn’t unexciting considering some of us make a career out of giving grand speeches about inclusive society trying to make the whole thing sound bookish and dreadful.

It took a full auto ride across the narrow, traffic-choked roads of my city to explain how technology has enabled people like me to use computers and put down our thoughts and ideas.

There was no sound from the driver’s seat, which made me think either he fell asleep on the wheel or dumbstruck as how I was a few minutes ago by the suspicion that I was taking him for a ride.

Technology may have made many things possible today, but the idea that persons with disability are as productive as anyone else somehow didn’t seem conceivable to many people.

Many times in the past, I’ve asked the question why? What was so illogical and improbable about a disabled person using technology and doing what he likes the best?

Then it hit me one day. As I perused some of the available statistics on disability, I realised our population is not only proportionately less compared to other distinguishable marginalized groups, but has been left to thrive on the fringes of the society struggling to shed the negative identity forced on us.

Census 2011 figures available in popular media reveal that India currently is home to 2.68 crore persons with disability, which is a little over 26 million, constituting from anywhere between 1.75 per cent and 2.45 per cent of the total population in different states.

Though I know that the visually challenged population is higher than in any other country, I’m unable to quote a credible figure. I think 10 million should be a good guess.

So you might find roughly one disabled person per thousand individuals. Given the apathy towards the population, we’re effectively invisible in the society.

Of course, some of you may scream in protest that it’s not entirely true. I don’t have to remind you that the picture of disability you see in our urban sprawl doesn’t reflect an economically forward marching constituency of the population.

If popular media, films and other visual representations are anything to go by, people relate disability largely with begging, hawking, singing etc, all for a few coins and plenty of pity.

If you have a majority in a country that doesn’t get to see people with disability often or see them as downtrodden or economically weak, how are we to create an inclusive society, or, to use one of the popular euphemisms, a “friendly” society?

Studying the issue academically makes sense up to a certain point, but it takes bold social engineering to change perceptions.

Project Vision, under the able leadership of Fr. George Kannanthanam, is conducting “blind walk” in Bangalore and four other cities to give an idea of how challenging it is to lead a life without eyes. The idea is to make people donate eyes and let their departed ones see the world after they are gone.

Creating a platform for specific disability groups or a cross-disability group to mingle with the mainstream of society would spread awareness much better than any other mode. To experience and to feel disability would make people talk about it and understand it better.

Hopefully, more people and groups follow Project Vision’s example in future.

**The blind walk will be held on September 6 in Bangalore. For further details, please write to Fr. George Kannanthanam at: director@theprojectvision.org.

**This blog is being brought back to life after months of deep freeze since I have been out working on my next book. That process isn’t over yet, but I would continue to keep things active at this space. Please forward and support the blog so that many could read and have an opportunity to think about disability and related issues.

Aside

Freedom within limitations

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What else do I think on a day when our country celebrates its independence?

The Americans celebrate their I-Day on July 4, Malaysians on Aug 31, Singaporians on Aug 9, while South Koreans like Indians mark the day on August 15. The days may differ, but the thoughts and sentiments behind the celebrations are much the same.

All human beings living in the country should find freedom in their spirits, in their hearts and in the ecosystem around them. Some experience all those freedoms, most could say that they have at least two of them. But still larger numbers find freedom neither in their spirits nor in the physical environment. Especially persons with disability.

Talking of freedom, I always think about M. G. Road, the arterial road in Bangalore, where you could observe people walking or chatting about with their companions in absolute comfort. Even the potholes on the pavements, the hawlkers occupying much of the walking area and the randomly parked bikes and cars wouldn’t upset the relaxed demeanor of people strutting about.

Of course, almost all of them are persons who could see and swerve away from any impending obstacle at the last minute. Blind persons don’t have that luxury. We’ll have to take heart from whatever freedom we find within the confines of our limitations.

I’ve walk along the pavement which appears straight to a seeing person, but is actually nothing better than a meandering rivulet jumping and swirling around the obstacles that slightly alter its course. One moment, I’ll be walking straight only to hear a streetside vendor shouting me to go left. And the next moment I’ll hear the voice of the vendor who had set up shop on the opposite side.

“The walking area is too narrow for me to walk,” I’ll shout above the din and chaos, but won’t get a response from the vendor-turned-guide. Surely, They won’t make an attempt to understand what I’m saying. The problem is, they think I’m blind, while I’m astounded how come they aren’t seeing what I do.

IT doesn’t matter if they think I’m blind. Of course, I am. But the problem is they also assume that I’m deaf so they shout closer to my ears and also dumb enough to enter a crowded road and don’t know where I’m going. I get worked up and try telling them animatedly that I am headed towards the Reliance Communications on the corner of Brigade Road and I have been the same miserable soul walking on those very pavements for nearly ten years and I know the obstacles almost by heart, all along giving them the impression that I’m rood to those who are essentially kind to me.

Oh dear god, is this freedom? Will there be a day when I would walk as comfortably as my fellow Bangalorians on those same pavements without having to agonise over confronting those vendors?

Will my city be the first in the country that recognizes the freedom of people for whom freedom comes with effort and is more valuable?

Will my city be the first to work towards making the public space inclusive for those with white sticks and on wheelchairs?

That’s something I think of every year on August 15 and hope things would change. I hope because I feel freedom in my heart and in my spirit. I could see people agreeing with me when I share my feelings on what it takes to lead a restricted life in a free space and in a free country.

I hope not just for myself, but for hundreds like me who find no voice to speak out their frustrations (because everybody thinks they are deaf, but don’t hear them out).

I hope because inclusion makes us all human. Inclusion alone would make us people with dignity and not people with disability.

And so I hope and hope on every Independence Day… still speaking out in support of my own abilities and that of hundreds like me.

**Support Association of Persons with Rare Eye Diseases (APRED) in whatever you can. Be the ambassador and tell the world about APRED’s activities and the cause it represents. For details, visit: http://www.apred.ordindia.org.

The myth of eye contacts

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Eyes, they say, are windows to a person’s soul. Poets, novelists and storytellers describe them as the communicator of truth. “They speak their own language,” goes a suggestion.

 

But if a person loses his eyesight or is born without it, does it mean he or she cannot communicate non-verbally? Or does it make them incapable of observing the body language of people around them?

 

Yes, blindness does prevent us from having eye contacts or observe the “language” eyes speak.

 

But if you really believe that god opens many doors by merely shutting two windows, you won’t be wrong most of the times.

 

Having lost my sight aged 18, it was hard for me to adjust to the fact that I could no longer have eye contact with people.

 

Since I could see before, I would instantly respond to someone calling my name by turning my head in the direction of that person. And then, I’d have the sinking feeling that I could no longer observe the beauty of the face or the expression in it.

 

As time went by, I realised it wouldn’t do any good getting disappointed over not seeing faces. If I couldn’t see anything else and not complaining about it, then why should I complain about not having eye contact with someone?

 

Agreed…having eye contact with close ones like mothers, wife/girlfriends, boss, colleagues and even your own kid would be excellent, but this challenge of not seeing is all about finding a different way of doing that, even if it needs a lot of practice.

 

Of course, people may question its accuracy, especially given that blind persons are as easily excitable as others. But if accidents ranging from spilling coffee over the computer keyboard to (ironically) falling over the probing white cane of a blind man walking on crowded sidewalks are any evidence, even perfect vision doesn’t guarantee accurate results when it comes to communicating with the external world.

 

I began to realize that people’s voices could be a wonderful communication channel just like their eyes.

 

I started to pay close attention to voices and any non-verbal gestures I could observe. For instance, people would look away and you would observe their voice going at a different tangent (usually to your right or left), which meant they are either evasive about something or not too keen to continue the conversation. In a professional situation, that would mean they are upset with you for something or they lost interest in you.

 

If the person’s voice is slightly high pitched than usual, they are trying to control their excitement or they are happy about something. Any trace of dullness would indicate that they are working hard to sound cheerful (probably not wanting to upset you) or wouldn’t like to bear their heart out in public. It could even mean they’re not up to conversation and would rather be alone.

 

Like location identification in cell phones, we always have to triangulate information coming from different perspectives to get the right picture. In different contexts, it would mean different things, but with some effort, blind people generally figure out the mood and the situation their companions are in by observing their body movement and voice.

 

That would be the tough part. Once we get the picture, most of us can moderate our own voice and body movement to match our companions not only to indicate (wordlessly) that we understand their situation and would like to act appropriately, but also to offer solace or join in their happiness. Imagine how a sighted person would react when asked by their blind companion: “So…tell me the good news…”

This has worked wonders for many of us in personal and professional spheres. At workplace, it’s vital that we get a quick grasp of the situation in order not to appear sluggish.

 

More often, questions over inability to have eye contact with other people or doubts on their non-verbal communication influences recruiters in choosing a blind person.

 

But if that is the only reason for hesitation, I hope you’d change your mind after reading this post.

 

**Association for People with Rare Eye Diseases (APRED) is planning a volunteers’ meet sometime during second or third week of August in Bangalore. As mentioned in previous postings, all the organization needs from volunteers is system time of about three or four hours a week. But before that, APRED team would like to meet those ready to be volunteers so that it would be a nice way to break ice and get introduced.

 

Please send your mails on the convenient day for the volunteers meeting at: anandhi.viswanathan@gmail.com or meeragargi@gmail.com. Please note that the meeting would be on a Saturday.