Ed: This is one person living with disability’s point of view. There are many differing points of view as there are to many things in life.
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, London UK
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 a
nd 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.
ยท Rebecca Atkinson’s play Playing God is at the Soho Theatre, London, from July 24 to August 4.
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