On 11/13/07, Dr. Vipin Malhotra <[EMAIL PROTECTED]> wrote: > i know why we become so hypocrite > One can not celebrate his blindness even with so many > justifications! > With love and care, > Vip! > ----- Original Message ----- > From: "Rajesh Asudani" <[EMAIL PROTECTED]> > To: "Geetha Shamanna" <[EMAIL PROTECTED]>; > <accessindia@accessindia.org.in> > Sent: Tuesday, November 13, 2007 10:30 AM > Subject: Re: [AI] Reflections on Becoming Blind > > > > absolutely well said!!!!!!!! > > > > I am tired of idealism. > > > > Given a choice nobody would prefer to be blind, > admittedly not even the > > lady > > who has written the article inquestion. > > Then, isn't it strange that given a choice and a > reasonable assurance and > > affordability, they say, they would prefer not to > take the advantage of > > becoming sighted-even partially!! > > > > Let us not confuse the things. > > > > It is one thing to live successfully as a blind > person, but it is totally > > another to euphemize it as a state not fraught with > any disadvantages--be > > those disadvantages inherent in the condition or man > made! > > > > Words like identity, etc. are hollow semantic > phrases. Andd, what is the > > identity of even a fully functioning/productive > blind person in sighted > > world? > > > > Moreover, as said earlier, there is no substitute > for sight, and a fully > > functioning/productive blind person is either a myth > or a rarest of the > > rare > > species who fortunately or accidentally finds > herself or himself bestowed > > with fortune and a field absolutely fitted to > his/her working. Still it > > would be a vocational functionality, and granted > he/she has noble family > > as > > not to make him aware of his shortcomings, still > community would not spare > > him/her the crunch. And, for this, either > family/vocational > > world/community > > is not to be blamed only. Sight is the norm and lack > of it is not, even > > though it is desirable to make it less fraught with > disadvantages either > > by > > human assistance or by technology or sometimes by > reasonable > > modifications. > > > > I am afraid if I have not been able to communicate > clearly. > > I wanted to write on the subject, but did not wish > to stir the hornet's > > nest. > > > > Rajesh > > Rajesh > > ----- Original Message ----- > > From: "Geetha Shamanna" <[EMAIL PROTECTED]> > > To: <accessindia@accessindia.org.in> > > Sent: Monday, November 12, 2007 8:48 PM > > Subject: Re: [AI] Reflections on Becoming Blind > > > > > > While I do not disagree with anything said in the > article, if gene therapy > > is made available and if it guarantees restoration > of sight, I would be > > the > > first one to take it. > > Identity and all that sounds good in the ideal > world. > > Although I have adjusted reasonably well to > blindness, nothing can replace > > the total and absolute independence that sight > grants a person. There is > > simply no substitute for it. > > > > Geetha > > ----- Original Message ----- > > From: "Subramani L" <[EMAIL PROTECTED]> > > To: <accessindia@accessindia.org.in> > > Sent: Monday, November 12, 2007 10:47 AM > > Subject: Re: [AI] Reflections on Becoming Blind > > > > > > Fantastic story. After reading this, I wanted to > forget about our agreed > > etiquette regarding on and off topics and wanted to > express my feelings on > > this one. > > > > I think the whole thing sounds extremely honest and > seem to reflect my own > > experiences of becoming blind from the same > condition. When I reacted > > indifferently to my mom's suggestion that I must > seriously consider gene > > therapy to restore my sight, she was shocked and > couldn't understand how > > such an important thing as getting back my sight > failed to evince a > > serious > > response from me. I told her blindness has become my > identity in the last > > 15 > > years and I am not all that comfortable shedding > that identity. I told her > > it offered a fresh and a totally different > perspective to life and so on, > > much on the same lines as Becky has described in her > article, but the > > problem with the so-called able-bodied people is > that they somehow fail to > > see the other side of things. > > > > Also, I don't know how many of you agree with me if > I say this: when we > > are > > blind, the world wants us to follow their weird and > convoluted > > understanding > > of morality. They, for instance, can't digest a > blind person smoking. > > Forget > > about the health implications of smoking or > drinking, but most people > > think > > it is utterly wrong as a habit for a blind person to > smoke, even if he > > enjoys this activity with his sighted friends who > are more than willing to > > light their cigarette for them or pour their drinks. > > > > As a smoker myself until three years ago, I used to > learn from my sighted > > friends that I attracted disgusted looks from > sighted strangers (who > > themselves would have gathered near that Tea shop to > light a cigarette), > > whenever I smoked. > > > > As a teenager losing sight, smoking then was a way > of gaining acceptance > > in > > the mainstream world that never used to treat me on > par. Only after > > realising the serious health implications as a > thirty-something, did I > > ever > > quit smoking and drinking. I am not recommending > this to anyone as ways of > > gaining acceptance into the mainstream world, but am > merely trying to > > point > > out the weirdness in thinking among the able-bodied > individuals in our > > society. > > > > Subramani > > > > > > > > > > -----Original Message----- > > From: [EMAIL PROTECTED] > > [mailto:[EMAIL PROTECTED] On > Behalf Of LSanjay > > Sent: Saturday, November 10, 2007 12:03 PM > > To: accessindia@accessindia.org.in > > Subject: [AI] Reflections on Becoming Blind > > > > > > Reflections on Becoming Blind > > by Rebecca Atkinson > > ************ > > From the Editor: On July 17, 2007, the > Guardian, one of the most > > prestigious newspapers in the United Kingdom, > published an essay by a > > woman > > who is losing her sight from retinitis pigmentosa. > In some ways her > > assumptions and experience of blindness depart > startlingly from the > > American, or at least NFB, presumption that a > trained blind person can > > travel as rapidly and cross streets as efficiently > as sighted pedestrians. > > Yet by and large her experience and attitudes are > healthy and articularly > > expressed. This is what she says: > > ************ > > Rebecca Atkinson is going blind. An > experimental therapy could offer > > her the chance to see again, but would she take it? > > ************ > > Earlier this year doctors at Moorfields Eye > Hospital, London, began > > the world's first gene therapy trials to treat > twelve patients who have > > Leber's congenital amaurosis, a condition that > causes progressive sight > > loss. Following successful animal trials (said to > have restored the vision > > of blind dogs so they could navigate a maze without > difficulty), it is > > hoped that the technique, which involves injecting > working copies of > > faulty > > genes directly into the retina, will prove equally > effective when carried > > out on humans. The results will not be made public > for a year, but, if the > > technique works, scientists hope it could eventually > be used to treat a > > wide range of inherited sight disorders affecting up > to 30,000 visually > > impaired people in the UK and potentially millions > more worldwide. > > The first viable treatment for blindness is > twinkling on the horizon, > > and, as one reader said on a national newspaper > message board discussing > > the trials, "The possibility of being able to give > improved sight to > > people > > with visual impairments is a great development for > the human race." > > But what of the people we seek to repair? Those > who have been born > > blind and those, like me, who are losing or have > lost their vision. Is > > this > > what we have been waiting for? Is it "a great > development for the human > > race," or a step forward in the eugenic quest for an > über race, free of > > imperfection and rid of the unease about disability > that nestles quietly > > in > > society's pocket? > > For the past thirteen years I have been losing > my sight, due to a > > genetic and incurable condition called retinitis > pigmentosa (RP). RP > > causes > > the photoreceptive cells on the retina to die off, > causing, in my case, > > tunnel vision. I liken it to looking at the world > down the middle of two > > toilet rolls. My central vision remains intact, but > where once was > > peripheral vision, now float only my thoughts. In > time these loo rolls > > will > > shrink to knotholes and then pinholes and then > possibly nothing. > > In the early years after my diagnosis, > blindness remained a repulsive > > and terrifying concept. Every year I would visit the > doctor, and he would > > say the same thing--that I must live and plan my > life with the certainty > > that blindness was inevitable. And so, slowly over > time, that is what I > > learned to do. > > But now the advent of gene therapy has pushed > open a chink in the > > door. Disabled people have long asked themselves the > hypothetical "would > > you be cured if you could?" question. Now for the > first time there is a > > chance, albeit very small, that maybe one day I > might actually get my > > sight > > back. Hurrah, you cry. I must be thrilled. > > Actually I am a bit confused. It is easy to > assume that all visually > > impaired people will be hammering down the doors > should gene therapy prove > > successful. But to say this is to assume that a > blind life is lesser and > > that all blind people really want to be sighted. > They don't. > > The first blind man I ever met, who also > happened to be my boss at > > the time, is one of them. I recently asked him if he > would have gene > > therapy if he could. No, came his reply. Because, he > tells me, regaining > > sight is more than just seeing again. There are > issues of identity and > > culture at stake too. "As the blind-from-birth son > of blind parents, I am, > > in part of my soul, defined by my blindness," he > explains. "It directly > > equates to ethnic or racial origin. If you give a > black person the choice > > to be white, there may well be significant > advantages in such a deal: more > > access to better jobs; freedom from the shackles of > ignorant prejudice; in > > short, a step closer to equality. But I'd bet most > would turn the offer > > down flat." > > But what if, unlike my old boss, you haven't > always been blind? What > > if, like me, you grew up with full vision and have > seen all the cliché- > > ridden things that those born totally blind are > pitied for never having > > seen--the sunset, your own reflection, the look in > your lover's eyes. What > > if your soul is sighted, and then you go blind? You > will cry and wonder > > why. You will hope and pray. You will wish it would > all go away. But the > > longer your sight has been on the slide, the more it > seeps into every > > crack > > of your psyche until one day you are no longer the > "sighted person" who > > can't see anymore. Somehow, strangely, in the dead > of night your identity > > has rolled over in bed, and you wake up and get out > the other side a > > "visually impaired person," and it feels like part > of you. > > It doesn't happen overnight, and perhaps it > doesn't happen to all who > > sail the strange seas of sight loss with me. But for > me there came a point > > when impending blindness was no longer my alien, but > my friend. I had had > > my time as a sighted person. I had seen the world > through my eyes. Now it > > was time to touch it and smell it and hear it. When > you lose your vision, > > you have to relearn the sorts of things that will > allow you to survive on > > the planet, such as crossing the road without being > flattened. Next you > > must tackle the real problem and learn to deal with > the attitudes of > > others > > as they morph around you. Misconceptions start to > spout from even your > > oldest friends' mouths because negative attitudes > about blindness permeate > > us all. You are about to cross over into the dark > side and see what > > wriggles and writhes on the underbelly of society. > Folk will see you as > > the > > sufferer, the pitiful, the afflicted, the > subhuman--that's you, yes, you. > > If you use a cane or a dog, people will stare as you > walk down the street. > > People will assume you are more lacking in > intelligence than your sighted > > counterpart. People you have never met before will > ask if you want > > children, and if you do, they will ask if the kids > will have the same > > condition that you have, and whether that is right > or wrong. Welcome. Your > > reproductive autonomy is in the docks of the moral > courts of the nation's > > minds. > > So if this underbelly is so wretched, surely if > the time comes when > > the doctors are looming forth with a needle > containing the working version > > of my faulty gene and heralding the promise of a new > day, one with a > > bright > > sunset and me at the wheel of a fast car, I'll take > it, right? Anything to > > escape? No. > > Saying yes to seeing again, even for someone > who wasn't born blind, > > isn't easy. The repercussions would ripple beyond my > eyes into my > > friendships, my work, my relationship. Would I > retain the unity I have > > with > > my disabled brethren if I could see? Or would I have > different friends, > > the > > type who fall by the wayside now because they are > not aware or empathetic, > > or are too aesthetically obsessed? Would I lose the > friends with whom I > > have nothing in common but who remain in my phone > book because they get > > the > > blindness thing? And would it be right to dump them > just because I can see > > and don't need their empathy anymore? If I stepped > into the pool of > > "normal > > people" again, where would my identity go? The > kernel of who I am has been > > sucked into a new body; now it would have to be > sucked back into the old > > one. And what of my relationship? Would we stay > together, or would I run > > off to do all the things I never got to do before? > There is a high rate of > > separation among couples where one person gets a > guide dog for the first > > time. Why? Because suddenly they can do things on > their own again. This > > new- > > found independence shifts the balance and cracks > appear. If this can > > happen > > with a dog, think what could happen with a pair of > fully working eyes and > > a > > car. > > Going blind isn't a smooth ride, though. It > comes down and squishes > > you under an insurmountable weight of grief and > disbelief. It is limiting > > and frustrating and changes the way you do many of > the things you used to > > enjoy--now you must dance with the light on and > drive from the back seat. > > But like the affirmation of near death, it affects > more than just your > > physicality. It gives you a unique perspective. It > is a grand experiment > > that most don't get to try: to observe as your brain > rewires and watch as > > the human body adapts in infinite ways. When my > vision began to get worse, > > I bumped into everything in my path because I was > still careering down the > > pavement at the speed of someone who could see. As > my mind caught up with > > my eyes, I changed the way I walked, with more > caution and less speed, and > > the perpetual bumping and tripping stopped. Losing > your sight is not like > > just shutting your eyes. > > The loss is so gradual that, as one sense dies, > others grow. Suddenly > > you can smell the world and sense when someone is > standing out of your > > line > > of vision. Your brain grows on the inside, and > things on the outside start > > to matter less. I get to live my life twice over, in > two different bodies > > (the sighted one I used to have and the partially > sighted one I now have), > > and with that comes the privilege of spying on the > world and its > > intricacies from multiple vantage points. It's a > cliché to say that > > disabled people are nicer. It is incorrect, in fact. > But for me vision > > loss > > has made me more empathetic and more openminded. I > have to take so often > > that I give more freely. When you rely on friends to > take you down Oxford > > Street or a stranger to get you across the road, you > think more > > consciously > > about what you give back and battle with the feeling > that you need them > > more than they need you. > > But, strangely, I am happier like this than if > I had carried on down > > the middle lane to mediocre city, never having seen > or felt real loss and > > known how to appreciate the good things around me. I > have met people I > > would never have met had I been sighted, and we have > been joined together > > by the common bond of disability (and there is no > glue that sets as hard > > as > > that squeezed from the pores of a minority). When > part of your body starts > > to die, you feel what it is to be human. You wake up > from the slumber of > > being just another idiot with an iPod because you > are forced to work out > > the bigger questions. Or at least ask them. Why am I > here? Why is this > > happening? You are alert to the immediacy and > fragility of your life. You > > know that the choices of the modern age do not and > can not extend into > > every realm of your life. You can't choose to see > (at least not yet). This > > is it. The upshot? You live in the moment. You > settle for your lot and > > love > > it. > > The concept of sight loss as a positive thing > is an elusive one. It > > is hard to grasp when you have experienced it, and > even harder to grasp > > when you haven't. It is not something I would have > chosen, but it is not > > something I wish hadn't happened. > > Would I like to stop it getting worse? Yes, > because I'm only human > > and, sometimes I lie awake worrying how I'll cope > when it's all gone. But > > would I like to have gene therapy and see perfectly > again? Five years ago > > I'd have said yes. Now I'm not sure, because if this > experiment of going > > blind has taught me anything, it is that what you > lose in one place, you > > gain elsewhere, and while a blind life is different > from a sighted life, > > it > > is not lesser. And ultimately it is better than > having no life at all. > > To unsubscribe send a message to > [EMAIL PROTECTED] > > with > > the subject unsubscribe. > > > > To change your subscription to digest mode or make > any other changes, > > please > > visit the list home page at > > > http://accessindia.org.in/mailman/listinfo/accessindia_accessindia.org.in > > > > To unsubscribe send a message to > [EMAIL PROTECTED] > > with > > the subject unsubscribe. > > > > To change your subscription to digest mode or make > any other changes, > > please > > visit the list home page at > > > http://accessindia.org.in/mailman/listinfo/accessindia_accessindia.org.in > > > > > > To unsubscribe send a message to > [EMAIL PROTECTED] > > with > > the subject unsubscribe. > > > > To change your subscription to digest mode or make > any other changes, > > please > > visit the list home page at > > > http://accessindia.org.in/mailman/listinfo/accessindia_accessindia.org.in > > > > > > > > To unsubscribe send a message to > [EMAIL PROTECTED] > > with the subject unsubscribe. > > > > To change your subscription to digest mode or make > any other changes, > > please visit the list home page at > > > http://accessindia.org.in/mailman/listinfo/accessindia_accessindia.org.in > > > > > > > ____________________________________________________________________________________ > Never miss a thing. Make Yahoo your home page. > http://www.yahoo.com/r/hs > > To unsubscribe send a message to [EMAIL PROTECTED] with > the subject unsubscribe. > > To change your subscription to digest mode or make any other changes, please > visit the list home page at > http://accessindia.org.in/mailman/listinfo/accessindia_accessindia.org.in > Dear Friends, I feel that the conversation is missing the central issue, i.e of the human experience when there is a paradim shift in own's circumstance. It is as clear as sunlight that every one wants to see the world, for that is the norm. The present article could be viewed as how a representative human try to adapt to her new envoirnment, for in the order of priorities, the determination to live one's life takes precedence over the loss of sight. Since we know of now, of cases of sighted persons losing their sight, we are interested in knowing their experiences and and how they adapt themselves to such dramatic( or more precisely traumatic) changes. Maybe with advancement of technologies, we would be reading interesting articles on how blind persons, in particular those who are born blind, adapt themselves when they get sight. It is all like a rich person suddenly becoming poor and vice versa. What is more important is that how one faces these changes. World's litrature, philosophy. psycology and sociology will become richer from these experiences. Hope my words are understood in the right perspective. B.Niranjan Raj Urs
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