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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.

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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.

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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.

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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.

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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.

The right convergence

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The group of experts seated at the dais had barely anything in common. One was an author and an IT industry leader, the other the head of a mental health institution and the third was a former bureaucrat at the health department. One cause had brought all of them together: taking mental health issues to the common public and spreading awareness.

Subroto Bagchi, the author and chairman of MindTree (IT company) Technologies, who helped Indians understand the strength of our culture and make sense of the changes brought forth by globalization through his books and articles, described the purpose that brought them together.

“We would provide a repository of information for the general public on mental health,” he said of White Swan Foundation, a not for profit organization he formed.

“We would provide actionable information that gives knowledge that help people identify mental health patients to handle their diseases, understand their rights and ask for services that they are entitled to,” he said, in a tone that suggested he meant business.

It’s not surprising to find someone in the IT field like Mr. Bagchi starting a foundation with the intention of doing some good to people fighting depression or milder mental health issues that usually go unnoticed. But the surprising thing, which also turns out to be an important trend setter for organizations fighting for disability rights, spreading awareness or empowering them is the fact that White Swan Foundation has partnered with the National Institute for Mental Health and Neuro Sciences (NIMHANS), the leading mental health institution in the country.

WSF has signed a memorandum of understanding with NIMHANS to “create and publish high quality content that keeps in mind the diverse needs of people” which it is offering to the public through its website whiteswanfoundation.org.

With advisors having technological, health and socio-cultural background, WSF has resolved to work on both the right content and the right delivery modes to reach people.

The most important aspect of this assemblage of expertise is the coming together of Information Technology and health, an effective combination of what people usually call tech and domain expertise. The combination has always proved effective elsewhere and there is no reason it wouldn’t in this instance.

When the world is taking rapid strides in terms of leveraging technology to address important issues, the disability sector is rather slow in adapting it.

It’s wrong to say they don’t use technology. In fact, some of them are very prolific users of the social media. But using technology is different from effectively leveraging it.

There is a need to aggressively deploy technology in both spreading awareness and reaching out to disabled population fallen through the crack somewhere between their last medical check, going through the disability and feel stranded. So while non-governmental organizations are diligent in delivering services, there is still a long way to go in terms of turning their focus on convincing those yet to realize the real potential of persons with disability as a valuable resource.

Social media, the people-centric technological innovation in the last decade, needs to be used more effectively for this purpose.

The other most important aspect of the WSF-NIMHANS deal is the effort to bring the idea of ‘ecosystem creation’ to the social sector.

No doubt, organizations could have embarked on similar initiatives before, but the fact that both the health and social organizations involved in this initiative understood the need for each other is significant.

For a very long time, the health and disability sectors in this country were content to be couched in their respective environments, allowing an artificial wall to come up between them. Each was happy about their respective services, which, though effective, proves to be inadequate in terms of awareness creation and establishing a system that supports everyone.

Then HIV/AIDS came along and the wall started to fall apart brick by brick.

But, such is the fate of this country that what applies in one sector need not necessarily apply to the other. So the wall between hospitals and disability organizations continued to stand.

As a result those suffering sudden and unexpected disability are left behind. Not that the doors of the NGOs are closed to them, but they should be convinced about the importance of entering it since the services they provide are important and life-changing. It’s also vital that such a help reach them and their care givers quickly.

But then, doctors have their plates full in terms of attending patients and NGOs are focused more on the task at hand, leaving the wall exist for far too long.

As a result, doctors diagnosing disabling conditions (particularly pertaining to the eye) find it harder to convince the patients and families that disability isn’t necessarily the end of life, while NGOs have little or no opportunity to reach out to those who find a disease or bodily condition that results in a permanent disability.

The WSF-NIMHANS partnership also offers the hope that people with specific expertise reach out to each other to serve the community. “You’d have heard many speak about India’s ‘demographic dividend’ (how the country can tap into its young and aspiring human resources). But if we were to lose them to mental health and leave them without help, then it would be a loss to the country,” NIMHANS director Dr. P. Satishchandra mentioned.

Combining the strengths of each expert is the only way to properly utilize human resources neglected because of their disability. This’s the kind of broader social and national cause that often brings expertise together. That’s also why we need an ecosystem in place, rather than more organizations.

**As mentioned before, my book, “Lights Out”, is available in various book stores and in online retailing platforms like amazon.com and flipcart.com (for cash on delivery). It talks about my slow disability and its impact on myself and my family. Proceeds go to APRED, the organization I support. So please buy and support the cause of gradual vision loss and empowerment of those with rare eye conditions.

**Association of People with Rare Eye Diseases (APRED) needs volunteers who could spend four hours a week for an online project we are taking up. If you are up to dedicating four hours a week for doing social work (which requires a PC/laptop and system time) please get in touch with meeragargi@gmail.com

Celebrating our uniqueness

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Ok… let me celebrate. I mean let me do that without apology or apprehension, without being crass, cruel or callus.

Let me do it without regret and do it by blowing a kiss heavenwards, because if I’m his creation and am part of him, this celebration is all about him and very little about me.

I’m not boastful or braggy about what has happened to me and what I’ve done, because there isn’t anything to brag, but I want to share with you the many doors of possibilities life opens up despite one of them slamming shut.

Forget about the faulty eyes, which doctors over the years have painstakingly explained, but I’m astonished by the machinations of the human mind –the fearful, negative, anxious mind that is so sure about life being one huge mess – focused on the one closed door to the exclusion of many that are open. Now…if you call that vision, or seeing or ‘reality’, I’d rather prefer blindness.

I want to share how progressive vision loss could become a key to opening several doors. Yes, we hate to see it close the windows to the world, but we also know we have no control on the inevitable natural progression triggered by a truant gene.

But isn’t this celebration about stepping away from the obvious and into the least? After all, the unrealized, unseen and unattended aspects of life are the ones that need focused nurturing. If you happened to discover the hitherto undiscovered facet of life that would improve not only its quality but its value, there’s a reason to celebrate.

I want those experiencing gradual vision loss to believe that wonderful things are in store for them in life; that their loss has the potential to unleash a million miracles which would set them apart from those who either spend their time chasing the mirage or find life too boring to live.

I want to celebrate the inner excitement of blind men and women that remains unadulterated by a million obstacles littering their pathways. Even better, the refusal of their eyes to see that the glass’s half empty, the dead clock’s wrong 22 times a day or life has to proceed only through a well trodden path. I’m excited by their refusal to see the danger in anything unusual.

If you believe blindness is a disability that limits the perceptive ability of a human being, you may be happy to know that it’s bliss not to see things you rather wouldn’t like, such as faces hardened by cruelty or hatred; malnourished babies sucking to the dry and lifeless breasts of their mothers or… two swinging bodies on a mango tree as if telling the world that people are capable of cruelty the human mind can barely comprehend.

The miracle about blindness is to extract a drop of tear from the eyes that had never gotten moist by murders. The sight of someone swinging a white cane softens the heart not because the heartless suddenly discover they have heart, but the realization that vulnerability proves stronger than cruelty in the absence of hatred and willingness to harm others.

Look at anyone blind, the thing that’s strikes you almost instantly is the connect between their heart and their face. Now…that’s what many would call ‘childlike’.

Yes, you might ask when did humanity celebrate honesty, but it’s time we do since most of us realize deception and dishonesty pollute our environment, push us to accepting poison as nourishment, mistake delirium for passion and showmanship for statesmanly. Believe me brother, you need honesty to cleanse your mind and start discerning the wrong from the right.

So let’s celebrate the absence of physical sight, which has failed to distract our focus from the inner vision that burns so brightly from the core of our souls.

Let’s celebrate the miracle of leading a normal life even as people around us watch with undisguised amazement how we actually manage that.

Let’s celebrate because we are simply happy and there’s simplicity to our happiness.

Let’s celebrate the inner power, the strength that holds us together and carries us through the difficult times.

Oh yes, there’s lot to celebrate life for. And there’s no reason we should stop because we’re going blind.

**Click the below link to listen to a 60 minute interview I had with author coach Mark Malatesta, who is based in Bolder Colorado. In the interview, I’ve given the background story of how I fine-tuned the subject of my book “Lights Out” with Mark’s help, how I found a literary agent within five minutes of sending my query letter and several other tips and tricks to be an author.

http://literary-agents.com/literary-agents-lakshmi-subramani-lights-out/

Aside

Diminishing vision and disappearing space

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It was the same street, same row of buildings on either side. I was sure that the rickshaw puller would get a sadistic pleasure by swerving dangerously close to the startled pedestrian. And the pedestrian must weigh the danger of standing unperturbed by the veering three-wheeler or move away to confront the stray cow bounded in his direction.

Yes, it’s not that easy to traverse the congested streets of south Indian cities, but people here are so used to the place that they make walking in these streets an art.

Not so long ago, I was one of the practitioners of this art, trying to time my jump to stay away from the speeding vehicle or panicking stray animal. Well…as long as I could see.

It’s not just challenging, but suicidal if I try practicing that art as a blind man. After all, traffic related injuries and deaths are increasing each year in cities like Bangalore and Chennai and the mishaps almost always involve people with perfect vision.

Forget about confronting chaos, but even a space with absolutely no movement or obstacle would be challenging for a person who had to undergo gradual vision loss. And herein lies the distinction between those who never had to use their vision before to perceive physical space around them and those who lose it over a period of time.

Despite the common belief that loss of one faculty strengthens the others, which may be true in general, not using vision to fathom the dimension of the space around us could pose quite a serious challenge.

Consider this example: how do you react when you find an empty chair blocking your way?

If you can see, you’d surely move it away.

A visually challenged on the other hand would put out the hand, touch it and move it away.

But a person suffering blindness as a result of gradual vision loss would lack the instinct to put out the hand or understand if he/she is standing behind the chair or in front of it.

No, I’m not saying the way to sidestep obstacles cannot be practiced and learnt over a period of time, but it is harder to change a lot of what we do instinctively.

Adjusting the walking speed to the environment, for example, cannot be taught consciously. Well, at least we still don’t have the wherewithal to modularize it, break it down to a set of instructions and teach those who are becoming blind in their 30s and 40s.

It also needs tremendous mental preparation and emotional acceptance for those of us becoming late blind to take the white cane and start learning mobility. In fact, many late blind still consider the white cane as an unnecessary advertisement of their blindness, but they would do well to realize that the world around them actually knows about their blindness irrespective of their decision to embrace or abjure the white cane.

As someone who had gone through that transformation, I can tell you that using the white cane is tremendously liberating. It quite literally puts the swagger back into your steps and to a great extent removes the hesitation, the uncertainty and the fear of colliding with objects.

But as late blind, we need to be careful with the surrounding environment since it is easy for us to get disoriented.

It often happens in my case. When someone stops me in the middle of the hallway or while I walk towards the door in my news department, I get absorbed with the conversation and find it harder to comprehend which direction I’m facing. I don’t know, for example, if I should walk straight or slightly sideways.

Even those who know how to handle the blind can’t understand this rather strange difficulty and probably end up wondering how someone who can’t comprehend his immediate space could be in a kind of job I’m in.

Though it used to embarrass me earlier, I now realize that observing the dimensions of the space and the obstacles around me could sometimes pose a challenge and I, with my physical condition, can do only so much to demonstrate my understanding of the space.

But if people are going to judge us only on the basis of our ability to walk a straight line (knowing that our blindness puts a certain limitation on us), we shouldn’t let that affect our morale. I don’t flagellate myself over it and in fact, I take pride in finding my own way out of such situations.

That is the only option left to us to tackle the space and the people who populate it.

**As mentioned in the previous posting, my book “Lights Out” will be introduced to audience in Chennai on Saturday, June 14 between 2.30 pm to 5.30 pm. APRED is holding a panel discussion on the occasion on some of the challenges persons with R.P. are facing. Venue: Rajan Eye Care, #5 Vidyodaya East Second Street, T.Nagar, Chennai – 600 017 (near valluvar Kottam).
For more details please call Rajan Eye Care at: +91 – 44 – 28340500, 28340300.

Aside

Why consulting your ophthalmologist is important after diagnosis?

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“R.P. is a progressive degenerative retinal disease with no cure or treatment. Then why should I go to my ophthalmologist regularly?”

The question from a patient in the audience almost stunned the doctor who gave a presentation on newly emerging treatments at a gathering in Bangalore.

Most of the patients and their care givers/family think going to doctor is all about cure or treatment. Though that could be true about any other medical situation, it will not be applicable when it comes to dealing with R.P.

More than the doctor needing us, we need the doctor. Why? There are many reasons, but let me mention the important among them.

-Being a progressive condition, R.P. needs medical monitoring.

Going to a doctor periodically to check whether there is loss of vision may sound like enduring the painful truth we all would like to escape, but we need that information not only to understand the extent of our vision but also to learn if the progression is gradual, fast or halted. While some of us may avoid the doctor specifically to shut out the bad news, we could actually be shutting out the good news, which would be that your vision has not degenerated.

Let me not get into the typical medical details, which I’m sure your ophthalmologist would provide, but as much as I can tell you, R.P. and other retinal degenerations are a-typical in the way they manifest in each patient since the genes could react differently in different patients.

This means you can’t judge how soon or late the condition would affect you. For instance, two of those who have gotten in touch with me are experience severe vision loss in their late 40s, while loss of vision in my case and that of one of my brothers was almost a freefall from the time of the diagnosis to the on-set and deterioration to the point of vision impairment.

I also had to recently deal with an 18-year-old patient who was diagnosed of R.P. aged six, but always thought she had reasonable vision. About six months ago, the doctor told her that she had lost nearly 40 per cent of her sight suddenly, which made her break down on the doctor’s couch.

There was one patient who experienced total vision loss in his sixties.

All these cases, viewed from the context of what we frequently hear from the doctors, suggest it is vital to understand how the disease affect each individual.

-One of the most neglected aspects of dealing with R.P. and other conditions in India is the inability of many patients to tailor their rehabilitation to the diminishing vision.

It is absolutely important that we take our rehabilitation seriously. But as much as we have seen, progressive vision loss takes a tremendous emotional toll on patients and their families. Adjusting to the rapidly failing vision often adds to the trauma. So it takes unusually long time to reconcile with what has happened and seek help.

Lack of immediate help such as mobility and orientation, information on jobs and education, proper counseling and mentorship (especially for the younger patients) and support for the families and caregivers also severely impact patient’s recovery from progressive vision loss.

Despite availability of technology, the ubiquitous social media and vastly improved expertise and rehabilitation centres, it is often hard to connect the services with the patients.

Everything, of course, begins with the first and the most important step of understanding how the condition affects our retina and, by extension, the way we function in our physical environment. For this reason alone, patients must stay in touch with their doctors.

Even if some breakthrough research were to happen soon, they need doctors to tell them if they are physically ready to subject themselves to treatments.

**I am introducing my book “Lights Out” to audiences in Chennai. Following through with my commitment, I have made members of APRED to organize a panel discussion among R.P. patients around some of the issues I have dealt with in the book to create a common understanding among the patient community. It would take place at the Rajan Eye Care auditorium, Tirumalai Pillai Road, Chennai on Saturday June 14, 2014. For more details, please write to anandhi.viswanathan@gmail.com.