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.

Aside

Where patients should call the shots

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Let me put this disclaimer first: doctors out there reading this post, please understand that the idea that I am about to explore is not some kind of patient revolt or Bolshevik-style insurrection on our health system.

Let me also admit that at the ground level, you all are doing an excellent service treating patients in general and ophthalmic patients in particular.

But I’m sure most of you would agree that the R&D system concerning health in this country is such a non-starter that there needs to be something done about it.

We don’t expect a medical boycott or a doctors’ strike on lack of R&D opportunity in India, because most of you find research work elsewhere in the globe.

It only leaves the patients to handle the situation for ourselves.

Especially in the case of conditions like Retinitis Pigmentosa (R.P.) and similar retinal diseases, many of us desperately look at news trickling out of other countries with the yearning to get it in India, but knowing full well that our system doesn’t waste its time on us and would prefer to focus instead on several ‘large scale’ (or preventable) eye issues among the Indian populous.

So, as you could see, it needs a bit of “people’s power” to get what we want in here.

Not that you neglect this. I recently heard of efforts by a group of doctors to get guidelines for gene related medical work in India. I am vague about that initiative since I right now have very few details on it. But yes, patients do understand your efforts and initiatives and see if we can give a greater push to it.

While Indian market after the market oriented reforms (which we call liberalization) has become a haven for buyers and consumers, the same isn’t exactly true about our health system.

In fact, it resembles how things were in the pre-reform days. You could get to health heaven if you can afford and if you can’t then all you could find is a token support and a state-run system worse than hell. Ophthalmic hospitals, at least in Chennai (Tamil Nadu state) and Bangalore (Karnataka state) show efficient functioning, but lesser said the better about most state-run health facilities.

Unfortunately, the diseases don’t understand the system and don’t leave the less fortunate alone.

We wouldn’t like to blame it on fate or some previous sins that we have R.P., have become blind and are left absolutely without any medical option. Consumers have a say in every industry or sector, then why not patients choose what kind of treatment they want? Especially when researches abroad make a spectacular progress towards curing retinal diseases.

Why should they depend on the system when they could use the cloud funding model, build the money power and decide the kind of research they like to be done in India?

A lot of us have accepted our conditions and moved on with life, but there are a lot many out there, young and hearts brimming with desire, who believe in newer possibilities science, technology and market conditions have provided.

They wouldn’t like to accept their blindness, though many are already doing something about their lives.

They, like many of us two or three decades ago, are hoping that they would one day see this world, and find S&T and market forces giving them at least a fighting chance.

These are the kind of people, young, energetic and with never-say-die attitude who would like to work with the medical research community and see if their fighting chance can be converted into a realistic possibility.

So in the end, this could be a revolution indeed, Bolshevik-style or not, but one in which all of us would win and all would grin in pride of what we have achieved if we ever manage this.

**Association of Persons with Rare Eye Diseases (APRED) is looking for volunteers for some of our projects. We are approaching students, employees of corporate houses and other social-minded individuals. Those interested could write to either contact@apred.ordindia.org or meera@apred.ordindia.org

The voice that helps and hinders

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No…I’m not talking about the “inner voice”, the famous personification of intuitive understanding that leads to moral or spiritual epiphany, but an artificial and definitely monotonous voice that shadows every keystroke I make on my PC’s input system.

Like many relationships we have, my bond with the Text To Speech (TTS) system, that helps me work on the computer with almost equal ease of someone who could see, is fraught with mixed feelings…. Love and hate, to be precise.

At the core of a blind person’s ability to work on the computer there is the TTS, the larynx that picks up the content on the screen and reads it aloud for the benefit of the blind person.

This voice is part of a software system called screen reader that identifies textual content on the computer monitor and converts it into voice. The screen reader is created so intuitively that I can not only find my TTS reading the content as I type, it also reads every word or sentence the curser picks up as it moves across the screen. Depending on my familiarity with the software, I can customize it any which way I want. For instance, I can make it read only sentences continuously or mute the keyboard echo that mercifully can stop the PC blabbering as I type a sentence or a word.

This is one technology the blind has made for the blind and so, it is not only dependable on most applications like word documents, Excel spreadsheets, webpages etc, but has transcended the PC and works even better on Smartphone’s and tablets.

Of course, the effectiveness of this technology depends on the friendliness of software/tools used to develop third party applications functioning on the devices or the content developed by news portals or email services which are governed by Web Access Guidelines (which most people comply with).

Those of you who wonder how a blind person could have worked on an article (as a journalist) and written his book, the screen reader is my secret; the one tool that makes me feel equal with everyone who had discovered the magic of words.

Of course, with every advantageous technology come a few annoyances. Like the mobile phone for instance. In pre-cell phone days, a marketing or sales executive could have disappeared from her workplace the moment her shift gets over and relax in the knowledge that there wouldn’t be a call from her boss until the next morning. That’s no longer the case as mobile phones and laptops have bulldozed into our personal space. Yeah…we hate them a bit for such levels of intrusion, but in the same breath, we all could relax when our children get stuck in schools and their teacher or fellow parents send us a text message informing us about their safety.

The same way, albeit in a lighter vein, I often think of the intrusion the TTS has made in my own life. Imagine the constant babble of a non-human voice that sounds varyingly from mocking you to irritating you?…almost like a child that throws up tantrums. Candies won’t work here.

The TTS, while helping me compose reports, stories or documents, would also rudely cut into my thoughts and recollections. Think of this artificial voice repeating the request “hide wider space, hide wider space”, going on while I struggle for a word or a phrase to complete the idea or narrative. Squeezing the larynx is out of the question as you know.

Since most TTS systems are made in American or British accent (or at least the ones I use), the way they read Indian names, including my own, would evoke laughter in anyone who happened to listen to it for the first time. The problem for regular users though is the lack of learning the correct pronunciation of some names. After all, there are some rare names even in our own cultural traditions, which could change with the way they are spelt. For instance, consider the name Jaswinder…Listening to my software read this name several times, I’m bound to forget the original pronunciation and end up remembering it as Jazz Winder!!

Laugh or frown at the voice, it’s harder to live without it.

**The Association of Persons with Rare Eye Diseases (APRED) has been formalized as a group under the Organisation of Rare Diseases India (ORDI). Please visit the organisation’s website at apred.ordindia.org for further information and to become members/volunteers.

Aside

Blindness doesn’t make you less of a dad

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I watched in the direction of the street corner and heard the loud horn. Being a late blind, the tendency to turn my head in the direction of a sound or a voice comes to me naturally. But on that day, I turned towards the loud horn and the roar of the moving bus imagining my daughter’s face on the bus window watching me as it left the street.

I stood outside my house gate dutifully as she ordered me to do so because that was the last day of her school term. “You won’t come to school. So you at least watch my bus go,” she told me before leaving.

My daughter is 10 years old now and understands my disability more clearly. I believed that my disability would create a wall…a kind of barrier between us, but despite clinging to that notion since her birth ten years ago, I still don’t find enough reasons to think it to be true.

She was three years then…or may be four, when, running to catch the ball, she fell down and had a mild bruise on her ankle. Tears gushed from her eyes, dripping from her nose, and over the upper lip. Well, that’s how she cried; intense and vehement.
My brother was the first to ask her what happened. “I’m hurt,” she said in a quavering voice. In fact, she showed the bruised ankle to everyone before coming to me, realised that I couldn’t see, then took my hand and placed it on the raw wound.

That was how sensitive she was all those years ago. No one instructed her how to handle her blind father, but she discovered it herself. Children always do, I guess. It’s the adults that need training.

A couple of years later, as I once gave her a bath and slipped a pullover around her tiny frame, she asked me: “Dad…are you really blind? Really?”

“Why do you ask, sweetie,” I asked her tousling her curly hair.

“Because you buttoned this shirt,” she said. Watching me unfasten the buttons again and do up for her benefit holding my fingers closer to each hole and slipping the buttons in. She just giggled mildly. Only the two of us were there at home when this happened, but I could imagine her eyes widen with a new sense of awareness. “My dad could button my shirt…” she said aloud as if for my benefit.

We were not together all those ten years. I was single and she needed attention and care young children always need. My family chipped in. In fact, my brother and sister in law virtually became her parents. That meant she was away in another city.

Three years ago, she came back to live with me. She was grown up now, almost four foot with a beautiful face that never betrayed her heart’s feelings. I wanted to introduce her to the basics of astronomy, the outer space and the universe. Such conversations were always intense as I described how the outer space was full of gleaming stars painted against a dark canvass, with the sun dispatching a brilliant light that illuminated the earth and other planets of our galaxy. I wanted to search the image for the galaxy and show to her, but couldn’t get myself to the task. Watching her excitement grow, I realised I was doing a pretty good job at narrating the whole thing.

We did a lot of things together in the last three years. She was largely helped by a close friend of mine in her daily studies, but there were those weekends when she would sit by my side, describe the math problem and ask me to help her solve it. Those were simple addition, subtraction or division sums that I had no problem solving for her in a step by step way so that she grasped the process.

Yes…my daughter knows I can’t see, but she also knows I could use a computer as good as anybody else. She knows that I’ve authored a book all by myself and I could tell her exciting stories about the outer space and the universe. I always think there’s more I could have done to be a good father, particularly the evenings and nights I have to spend at my newspaper office and watch her sleeping frame as I return home, but I guess I’m trying to do everything possible to be a good dad. I’m certainly trying…though success in relationship building is not guaranteed as you may all know.

**We are inaugurating Association for Persons with Rare Eye Diseases (APRED) on Sunday, April 20 in Bangalore. The project would function under Organisation for Rare Diseases India (ORDI) under the able leadership of our friend Ms. Anandhi Viswanathan. If you are interested to volunteer, please write to me personally.

**My book “Lights Out”, the story of a man’s descent into blindness, is published by Random House India and is available in all major book stores, and also with amazon.in and flipcart.com. I’m donating part of the book’s proceeds to APRED so please spread the word and contribute to the cause.

God isn’t cruel; disability isn’t punishment

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One of the greatest disadvantages of having a disability, especially in a country like India, is that you become the focus of prying eyes the moment you enter a public place like a restaurant, the airport lounge or railway station. If you are accustomed to swaying your white cane as you wade through crowded platforms, there would be a few hands trying to hold your arm, steer it around objects as if turning it right or left would automatically turn your body to the desired direction. A few would have the courtesy to hold you gently and guide you around the chaos towards a seat. But even then, you face the danger of having to put up with folks who get curious.

Usually, a gentle but not too subtle interrogation follows after the introductions are over and a few minutes of customary silence pass. What do you do?, How do you occupy your time? (It’s usually assumed that a blind person is without a job and entirely in the care of his family) Do you get everything in subsidized rates? (Government of India provides close to nothing, but people think if we look decent we have to thrive on subsidies and half rates)

But the worst situation is when people get overly disturbed by the idea of someone surviving blindness, that too losing sight after having lived a normal life. “God’s cruel. Why should he give such a cruel punishment to you?”

“Oh brother, do I look like a prisoner in jump suit?” I feel like asking every time the business of god being cruel comes up for discussion. But I maintain silence to let the conversation (usually a monologue) reach its conclusion. In fact, such conversations usually end in a dull sort of way, with the other guy feeling helpless as if it was he who had to bear our troubles.

I normally take the ‘god’s cruel’ comment with a lot of humour, as if I’m guarding over my (god-given) inner happiness from the outside world which assumes that I’m brooding over the fact of not seeing. There are bad days when that comment evokes unusually sharp response. Sometimes I sigh helplessly, thinking about the futility of trying to convince someone about my generally healthier and happier state of mind, especially when he has already assumed that there’s something wrong because I’m blind. But it’s a mystery how god comes into all of this.

Having been a practicing Hindu, I can say most of our misconceptions about god (in our part of the world even among those following other religions like Christianity) have got nothing to do with our faith. Superstition is usually a heady cocktail of traditional beliefs, an inherent fear in god that he would do something awful to you if you don’t obey his orders (most of which are issued by human beings), or blaming every misfortune on not being pious enough.

This cocktail is spoon-fed to us from childhood. It starts to become a part of our habitual thinking pattern when an elderly says you fail in your school exams if you don’t pray to god (before leaving home for exams in the way of petitioning him about your success). We’re taught from that age to look at god as a kind of empowered genie who grants wishes or a powerful force that strikes you blind or leaves you deaf for even a slightest transgression. Over all, we are presented a picture of god which is tougher and exacting, who causes pain at the slightest of provocation.

As that pattern starts to get deeply entrenched in our belief system, we actually forget that god is far more loving and caring than we bother to understand; that he has given us a challenge for a reason (could be to learn or experience something or offer solace to others), which is for us to find out; And that he would have meant disability just as a unique attribute to someone or an intrinsic aspect of her personality, rather than to make her inferior to fellow human beings. So is it god’s fault if we think disability is a punishment?

**For those in Bangalore who would like to volunteer for a cause, please get in touch by writing to my email: l.subramani@gmail.com.

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The loving presence

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There isn’t anything more painful for patients and their caregivers than the days and weeks that follow the diagnosis of a condition like Retinitis Pigmentosa. In a country like India, where awareness about different kinds of ailments among the people still needs desirable improvement, the seriousness of the disease isn’t realised until the eyesight actually starts to decline.

Patients’ experiences suggest that diagnosis of R.P. need not necessarily coincide with the deterioration process. The gap between detection and deterioration can be weeks, months or possibly even years. And, as doctors assert, deterioration isn’t always complete and patients can expect to retain some vision, but even they won’t be certain as to how much of vision the patient would retain, for how long, or, if total blindness could complicate healthcare issues during old age?

Such issues make care giving more challenging for close families and loved ones. For instance, if the deterioration is rapid, it would take a while for the patient to feel the impact of it and the immediate family is completely in the dark about it. If the patient is a child or someone who is reticent, then it would be harder for the patient even to verbalise how much they could see and how clearly? Even for someone who isn’t reticent, the sheer confusion or inability to immediately grasp the drop in visual acuity could create problems in accommodating themselves to the fast changing situation. In short, whatever the patient could see a week or two ago could disappear behind the haze and blur without the patient understanding it clearly.

A college-going teenager diagnosed with R.P. at the age of six, experienced nearly 40 per cent drop in vision about six months ago. “The days here were cloudy and grey and I thought my sight was dim because of that,” she said, asked whether she could feel the deterioration. When the doctor confirmed that she had actually lost significant vision in her eyes, the girl broke down right on the doctor’s couch. The family too had no clue about it until the doctor found out.

This is perhaps why patients must constantly check their eyes. Families too must be alert and observant about any hesitation, display of fear while walking or difficulties in spotting objects.

Despite the challenges, families have a crucial role to play in understanding the condition as much as the doctors or patients themselves. At a time when children are under pressure to excel in studies, in sports or music, parents put them through a treadmill, quite literally in some cases, without worrying about the child’s physical wellbeing. Many of them interpret the child’s inability to see the blackboard as a prank, an excuse to escape the drill. When the child wonders why she is unable to see the math problem the teacher had written on the blackboard, telling her that she isn’t sincere in doing her work or she is playful will only multiply the pain and frustration.

Success in many cases comes as a result of someone loving us and instilling the belief in us that we would live our dreams. Rather than drill sergeants, militarist work masters and those barking instructions on our faces, we need people who stand behind us all the time and squeeze our hands discretely just to inform us that they are there.

People with R.P., as much as the able-bodied persons, need loving presence of their families who are proud of them the way they are. Such loving persons alone could inspire us to succeed and add meaning to our accomplishments.

**Our friend Mr. Prasanna Shirol has established Organisation for Rare Diseases India (ORDI) with a group of friends and likeminded people both to create common platform for patients/families who deal with very uncommon diseases and also to represent the patients at the government level. ORDI would help us aggregate the focus and attention to bring treatment and diagnostics and make them affordable. Prasanna is also working hard to build patient-led initiatives and disease specific networks. Patients who had fallen through the ever-widening cracks in our health system, merely because our pain and suffering is caused by an ailment that is rarely understood, need such initiatives where we can ensure people act in our best interests and we could personally work to help each other. Please visit:

http://www.ordindia.org

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Find out from an expert: how Apple devices are changing lives of low vision people

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Foundation Fighting Blindness (FFB) in the United States has been doing pioneering work in terms of informing patients with retinal conditions about research in finding a cure, besides helping them cope with the diminishing vision. Importantly, the not for profit organization is funding several scientific and medical researches that would eventually help restore vision. Some of the research has been very promising.

FFB is holding its annual conference called Visions 2014 at Denver Colorado between June 19 and 22. Among several interesting sessions, the conference will host a session by assistive technology expert Douglas Walker, who will demonstrate how Apple products make life easy for persons with retinal conditions, who suffer varying degrees of vision impairments due to a host of genetic conditions affecting retina.

FFB’s newsletter “In Focus” reports that Douglas, a 24 year veteran in accessible technology domain as a trainer and expert and is also affected with Best disease, a condition that has gradually diminished his central vision, will present accessibility of Apple devices in two separate sessions. He is doing it after he held a similar session last year and learnt that there was a lot more to talk about how the devices are friendly to low vision persons.

Douglas would focus on the accessibility of the devices in the session “insight into iDevices”, while he would specifically discuss Apple’s screen reader in the session “insight into Apple Voiceover”.

“We call what Apple is doing “universal design,” meaning you can take a product off the shelf and it can pretty much work across the board with any disability,” Douglas tells in an interview for the FFB newsletter.

“If you look at all the iDevices, or the Mac, MacBook or Apple TV, it’s doing a fantastic job with universal design. There are options for people with motor issues; you can hook switches up to the iPhone and iPad, or even program them to detect hand gestures. So these devices are not just for people in the visually impaired community; they’re for the entire community of people with disabilities.”
“People assume that when you’re talking about low-vision accessibility, you’re just talking about enlarging the screen. But that just scratches the surface. You can do so many other things — like invert the color schemes, have it speak different things you’ve selected. You can change the contrast and the font sizes,” Douglas tells the FFB newsletter.

“I’ll present the newest software, IOS7, assuming most people upgrade. Apple says 75 percent do, and it’s been out a while. I’m going to present on an iPad, which will be hooked up to a screen. They’ll see what I’m doing, all the different accessibility features built in there,” he says, talking about his session at the Visions 2014 in Denver.

As someone using iPhone, albeit the 4s version of it, I personally find iPhones much more comprehensive in addressing issues faced by persons with different kinds of disability. Even if you are an ‘able bodied’ user, you can check out by going to Settings/General/Accessibility on your iPhone device and play around with the features there just for fun. It would be much more instructive than any elaborate article on accessibility. Also, Douglas has done a video on iDevice accessibility which you would enjoy watching on YouTube. Just search or find his video at FFB’s site.

For more on Douglas and his session, please visit FFB’s website and click on ‘In Focus’, where you would find much more about Vision 2014.