My Eyes Are Broken…But I’m Not

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.

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19 thoughts on “My Eyes Are Broken…But I’m Not

    • Hi, Stacey,
      I’m very glad you’re enjoying the blog; I hope you continue to do so. I wish you luck for this difficult journey you’re on. I am confident that your optimism will carry you through any hardship you might face.

  1. Speaking for myself, I’m blind from birth, and obviously one can’t spend all day hoping for a cure that in all likelihood isn’t going to come in my lifetime, nor would I undergo any crazy dangerous procedure for one, but there are many ways in which I’m “broken”, at least inasmuch as there are any number of things I’ll never be able to do.

    I’ll never be able to use an osciloscope, to design blueprints for buildings or objects, to pick up a mathematics book from the library and just read it, or to play an instrument while I read the music sheet. Of course lots of sighted people can’t do this either, but they could if I wanted to. And this is just a small set of things that no matter how much technology we throw at it doesn’t seem will ever be fixed, at least not before a “cure” is possible. I’d like to hink that, in spite of it, I can be productive for society, but I also have a strong suspicion that, all else equal, the flexibility of sight is going to be a big advantage for most jobs. Even if it isn’t, the prejudice that it is makes getting work extremely difficult, and that’s the basis for living independently…

    I guess I’m just a lot more pessimistic about what blindness is like. It’s perfectly true one can live a happy life without sight, but it’s no less true that lacking sight isn’t just a neutral irrelevant detail. It’s a very serious constraint.

    • David, I would regard your outlook far more realistic and pragmatic than pessimistic. I wrote this post assuming that a cure is neither likely nor sure to be successful. However, if a perfect cure did come along, and I knew the adjustment would be smooth, I’d be all over it. You’re absolutely right that being sighted is simply easier. Anyone who tries to claim otherwise is kidding themselves. Thanks so much for bringing this perspective to this forum; it is a valuable and honest one, free of new-age rhetoric about loving and accepting yourself etc. etc.

  2. I too have been blind since birth. I have some light perception, but that’s about where it ends. As I read this blog, one thing keeps jumping out at me. Why is everyone calling it a “cure for blindness?” I have never thought of my blindness as a disease. If you wwant to get technical, it is caused by one, LCA in my case, but, I’ve never thought of being blind as a disease, which is what the word cure seems to imply.

  3. I do honestly appreciate this perspective, since it is the very POV I hold. I can also appreciate the perspective of those who are trying (in the ways that they know how) to give us every advantage possible, and wish that the things we are missing could be “given back,” as it were.

    Thanks so much for such a thought-provoking article, and with permission? I would like to reblog it.

    Best,

    Amber H

  4. Hi, Brad,
    In the case of LCA (which I also have), we really are talking about a degenerative disease; anything reversing the effects of this disease would, by definition, be considered a cure. I think I understand where you’re coming from, though.

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  9. I’ve also been blind since birth, an I’ve always struggled to relate to what you said in your post, about how we observe details the sighted overlook. For the most part, I don’t think that’s true for me. My sense of hearing and spatial skills are sub-par, so my sensory reality lacks the richness that many other blind people seem to be able to access. And, like David, I think about all the things I am unable to do as a blind person, and with which technology would not help, such as creating art that relies on visual ilusions and very complex photoshop editing. I’ve set myself the difficult task of living in the present, while also hoping for a cure, and in my own way, working to help find one (I prefer the word “transition” to cure). But because there’s a dominant belief about congenitally blind people, (namely, that we can’t miss what we don’t have), my intense desire for sight can be scary and isolating. But I can’t change it, just like I can’t change blindness itself.

    As far as visual rehabilitation goes, I’ve experienced some sporadic access of vision, and yes, sensory overwhelm is a huge huge thing. But I’m actualy quite impressed with my ability to understand some things visually, especially object recognition, and I’m cautiously optimistic that scientific research can create strategies that we can use to aclimitize

    • I’m not entirely sure if our senses are necessarily made richer/better just by virtue of not having been able to see, or if we simply pay more attention to them overall. Naturally not having had sight since birth I have nothing to compare, but as Meagan said, because you’re lacking in that one area you tend to pick up on things in others that most sighted people won’t. Naturally it stands to reason that not all blind people will have the same level of observation–just like not all sighted people will see exactly the same things. I may completely miss something that you’ve had no trouble latching onto, and vise versa.

      It sounds like you have some at least semi-useable vision, at least now and again. I’d think it’s not entirely outside the realm of possibility that you’re trying to compensate for that in some way, and that may or may not be playing into the issues you’re having with, say, spacial awareness. Of course that’s just a guess on my part, which is all I can really do–I’m not you, after all–but that seems to be the way to go. When someone loses their sight, they’re escentially forced to rewire themselves to gain more information from the senses they have left. Because you’ve had access to the visual environment, I wonder if you’re perhaps on some level trying to learn the reverse.

      • I don’t think your guess is far off. Just to clarify: the vision I’ve had access to is extremely unpredictable, and I only discovered how to access it about six years ago (prior to that, I had no useable vision). However, I am wondering if my brain has been processing some visual input during my whole life, but without my conscious awareness, and that this drip-dripping from my visual system is what’s caused my other senses to fail to fully adapt to blindness. I know some other congenitally blind people with LcA who have poor spatial skills, and though of course residual vision isn’t the only factor in determining this, it’s possible that it does play a role. The cool thing is that in the next three weeks, I’m going to be testing my unconscious vision hypothesis on myself with an eyetracker, so should have more answers soon.

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