But what about advantages of learning this new but universal language?!!!!
Are we afraid of change or learning something which is one of the
fundamental attributes of human species, nay a right of every body
arbitrarily denied to some?
Please let us not make blindness a norm, let us accept that it is sight
which
is norm and lack of it a statistical exception. Surely the blindness is not
favored by natural evolution. Do not confuse my contention with eugenic
ideas but I am trying to argue against defensive glorification of a
condition which surely merits to be made less stressful and disadvantageous.
I won't regret if one day nobody is born blind or becomes blind by other
contingencies. But, yes, nobody may advocate selective breeding
marginalization of the blind. Any human being who is consciously aware of
her/his existence [save the natural or brief states on unconsciousness] and
wills to live must afforded reasonable opportunities to do so.
Rajesh
----- Original Message -----
From: "LSanjay" <[EMAIL PROTECTED]>
To: "Geetha Shamanna" <[EMAIL PROTECTED]>;
<accessindia@accessindia.org.in>
Sent: Monday, November 12, 2007 11:03 PM
Subject: Re: [AI] Reflections on Becoming Blind
Hi,
If you are a born totally blind like me, restoration of sight will bring its
own complexities. You have to learn a language called "seeing" which
sighted people mastered since the very first day of their birth. I am sure,
this is not as simple as both blind and most of the times sighted people
believe to be.
----- 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.
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