I can’t count the times people have discussed a cure for blindness as though it were a life-saving miracle. They treat it like the one thing in the world that would fix me—make me into a normal, functional, and ultimately happy human being. If I dare to question this idea, I’m immediately dismissed because “…well, if you knew what it was like, you’d change your mind, trust me.”. The problem with this argument is that it only represents one perspective: to a sighted person, seeing is the most essential thing in the world, and they are incapable of imagining life without it. Therefore, sighted people assume that my life must be a dark, terrifying, lonely place full of uncertainty and suffering. Gregg, who has been totally blind from birth, observes that, for many sighted people, losing their sight is almost akin to losing their life—a kind of death, so to speak. They rely upon it to the extent that going without it seems horrifying beyond words.
And yet, people lose their sight all the time, and most of them go on to live full, happy lives. Certainly it’s difficult at first; the adjustments that must be made are impossible to quantify. Still, they make it work, and many of them find their existences fulfilling enough, even without their sight.
Imagine, then, how a person who has never seen must feel. Having never relied upon sight for any aspect of their daily living, a world without it is perfectly natural and, for some at least, even desirable. To return to Gregg’s perspective for a moment:
I define the world by the things I can hear, taste, smell and touch, and in almost thirty-one years I’ve learned that there are many details found in these four senses that people with good vision often miss or ignore. I wouldn’t ever want to give that up for purely aesthetic reasons…
I can say that, in my own experience, there are many subtle details sighted people never appreciate, because sight is such a dominant, all-consuming sense. It is, as I like to refer to it, the greediest sense humans possess. I notice, for instance, the smell of fresh ice at a hockey game, while everyone else is busy exclaiming over the sport. I love the smooth feel of a loonie in my hand (it’s my favourite coin) while most people only notice the inscriptions on it. I can hear my surroundings with such precision that I hardly need more than echoes and a few landmarks to get around. While none of these things diminish the value of sight, they do mean that life in darkness isn’t so colourless as you might assume.
When I try to explain this to the average sighted person, they can hardly contain themselves, so exasperated and incredulous are they: “Butt…what about sunsets! Or the faces of the ones you love! Or…like…photographs! Wouldn’t you love to see all those things? Aren’t you curious? Don’t you care?”. The short answer is, sort of. To quote my good friend Alicia, also blind from birth, “I’m certainly curious about colours, and sunsets, and cats, and what people look like…” but she goes on to say that “I don’t live in hope, or even think about a cure all that much.”. This holds true for me, as well. There is no denying that it would be very, very cool to be able to see all those wonderful things I’ve been vicariously appreciating all my life, but I don’t find myself with a passionate desire to lay eyes on them, either. It feels like a perk more than a necessity, and I certainly don’t live my every waking moment hoping for a cure. Particularly for those who have been blind from birth, it’s pretty tough to miss what you’ve never had.
Now, one cannot have a nuanced discussion about cures for blindness without conceding that being sighted makes life considerably easier. If ever I become frustrated with my lack of sight, it is because of practical problems, like wishing I could drive myself somewhere instead of calling a cab or trying to figure out bus routes (or worse, bumming a ride). When I drop my keys and spend five minutes groping for them, I dearly wish I could just look down and find them instantly. The employment perks don’t hurt, either; as I’ve said in previous posts, the blind are chronically unemployed, and even when we do find jobs, we have to work extra hard to prove that we’re worthy of them. All that being said, civilization has evolved to the point where we can live reasonably independent lives, and most of the things we can’t do by default can be accomplished with the help of technology. It’s not as though we live in a wasteland with no connection to the outside world, and no meaningful place in it. It can be argued (and often is) that someone who willingly refuses a cure because they’re happy with their lot is a drain on resources. Why should the public help such a person when they have chosen this life for themselves?
This argument leads me to the crux of the matter: a cure is not a perfect solution. It’s comforting to think of it as a Hollywood-style magic moment where the patient opens their eyes, looks around, and becomes overwhelmed with the beauty and wonder of the world at large. This might be difficult for a sighted person to imagine, but humour me: try to picture (pardon the pun) what it would be like to suddenly gain an entirely new sense halfway through your life. All the feedback your brain is receiving is new to you, and you have no idea how to process it. If you’ve ever watched those viral videos in which deaf people are given cochlear implants, you’ll notice that the moment they begin to hear, they burst into tears. These tears aren’t necessarily those of joy; they are, more likely, brought on by being intensely overwhelmed. It is not as though a newly sighted person could look at the nurse beside them and think ‘okay, that’s a human dressed in scrubs’. They would have no concept of colour, shape, visual context, or even light and shadow; it’s all so new, and totally foreign. As CrazyMusician and Gregg have both mentioned to me, the rehabilitation process for a newly-sighted individual could take months or even years. They would essentially have to relearn how to do every little task that they have previously done without the use of their eyes. Even if the rehabilitation went smoothly, the mental and physical exhaustion brought on by processing so much information would be potentially debilitating, at least initially. This isn’t even taking into account the invasive and risky procedures a cure for blindness would require. Fiddling with detached retinas and faulty optic nerves is no mean feat. Since few have actually undergone such procedures, it’s impossible to say how successful a cure would really be. If you’re curious about what it’s like for someone with partial vision to be given enhanced vision, even for a short time, read this excellent post by Leona Emberson. While she enjoyed her experience with her electronically enhanced eyes, she went back to her regular vision rather gladly. For those who’ve lost their sight later in life, a cure makes a lot of sense. For people like me, though, it’s risky at best.
Don’t get me wrong: I understand why sighted people push so hard for a cure, and seem so baffled when I tell them I’m not actively hoping for one. However, until you’ve walked a mile in my shoes, you can’t understand what my life is like, and cannot, therefore, make judgments about what would make mine better for me. Only I can make such judgments, and I’ve already made them. I remain open-minded, of course, and should a relatively low-risk cure come along one day, I may go for it. The point is that I don’t have to; I don’t have to submit to being “normalized” just for the sake of it. As Chris Swank so eloquently puts it, “I’m not broken, even if society thinks I am.”. There’s a great deal of difference between broken eyes and broken people.