Interesting article about regaining sight

Greetings. Here's an interesting article about the blind possibly regaining sight, and the possible questions and issues that come out of that. I received this from the NFB's blind students email list. As for me, I have thought about some of the questions raised below often and really haven't come up with any answers. Except that if I were offered the chance to see again, I'd first think about it for a long time, but eventually probably refuse. Read on about the various issues that come out of sight restoration to find out why. Enjoy, and as always, please excuse any formatting errors.

Subject: The Chance to see again...would she take it?

REBECCA ATKINSON IS GOING BLIND. AN EXPERIMENTAL
THERAPY COULD OFFER HER THE CHANCE TO SEE AGAIN - BUT WOULD SHE TAKE IT?

TUESDAY JULY 17, 2007
THE GUARDIAN

EARLIER THIS YEAR, DOCTORS AT MOORFIELDS EYE
HOSPITAL, LONDON, BEGAN THE WORLD'S FIRST GENE
THERAPY TRIALS TO TREAT 12 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
UBER-RACE, FREE OF IMPERFECTION AND RID OF THE UNEASE ABOUT
DISABILITY THAT NESTLES QUIETLY IN SOCIETY'S POCKET?

FOR THE PAST 13 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 CLICHE-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 ANY MORE. 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 RE-LEARN
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 ANY MORE? 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, 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 CLICHE TO SAY THAT DISABLED PEOPLE ARE
NICER. IT IS INCORRECT, IN FACT. BUT FOR ME,
VISION LOSS HAS MADE ME MORE EMPATHETIC AND MORE OPEN- MINDED.
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 TO A SIGHTED
LIFE, IT IS NOT LESSER. AND ULTIMATELY IT IS BETTER THAN HAVING NO LIFE AT
ALL.