Reflections on Becoming Blind

Reflections on Becoming Blind

Braille
Monitor
November 2007
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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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