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. 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