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.

10 Ways To Be a Good blind Person, Part II

As I mentioned last week, the “rules” governing the conduct of blind people are a tangled mass of contrary ideas, making it impossible to get it right. I’ve essentially given up trying, but I still feel it important to illustrate the end of the spectrum I did not cover last week. It is the end I like to call “dependence, abnormality, and extreme expression”. While last week’s rules focused on blending in, emulating the sighted, and feeling subpar, this side of the spectrum focuses on playing up the blindness to levels I consider unhealthy and absurd. While this set of rules is likely observed by far less people than last week’s set, they are doubly significant because they are, if possible, even more damaging than the others. It’s time to call these out for the ridiculous, self-defeating falsehoods that they are.

 

 

  1. A good blind person understands that disability automatically and permanently bars one from competing in this sighted world in any meaningful way. Any attempts to be competitive should be restricted to the Blind Community, for it is only there that one can hope to stand out in a way that matters. If sighted people try to draw a blind person into the wider world, they should be strongly discouraged.
  2. Blindness is an inextricable part of one’s identity, and should be treated as such. Those wishing to suppress their true selves by avoiding blindisms (EG: rocking, head bobbing, hand flapping etc.) are guilty of trying to fit a hopelessly square peg into a round hole. Blindness is all of what we are, and striving to seem normal is both futile and disloyal to oneself and the Community.
  3. A good blind person acknowledges that disability invariably breeds dependence on others. Asking for help—even when one could help oneself—is inadvisable. Because we are so disadvantaged, we should accept that our lives were meant to be made easier by are more capable sighted counterparts. Blind people who devote themselves to becoming more independent than is natural are merely in denial, and will eventually realize that disabled means dependent, no matter who you are. After all: what kind of logic would permit a person to do something for themselves, often with undue hardship, when it can be done for them?
  4. A good blind person will immerse him or herself fully and completely into the Blind Community, especially where blindness-related technology, education, social networking, and other such pursuits are concerned. Championing causes aligned with greater independence, especially in the work force, are unnecessary. There is no point in wasting one’s energy trying to make this world easier for us to live in. It is much wiser to accept the altered (and cloistered) life that blindness affords us.
  5. A good blind person blossoms when surrounded by the unique solidarity, comfort, and support only fellow blind people can offer. Trying to fit in with sighted friends, coworkers, (assuming one bothers to work), and love interests is a disaster waiting to happen. We only fit in with those who are like us, and the sighted should only be interacted with when absolutely necessary. Only with fellow blind people can we truly be ourselves, and being true to what one is is the golden rule. Blind people professing to be at ease with sighted people will be dismissed as arrogant; it is likely that such people have delusions of grandeur in any case.
  6. A good blind person will live a life that adequately displays his or her self-love and self-acceptance. It is perfectly acceptable, therefore, to live off government assistance, avoid working at all costs (no one would hire us anyway), and spend the bulk of one’s time browsing social networks for the blind or associating with blind friends. Longing for a normal life is silly and unproductive; one should instead enjoy what the disabled world has to offer. So go ahead: name your cane; write long and detailed social networking posts about your guide dog (preferably from the dog’s point of view); put “blind” into your every username or alias; wear your mismatched, faded clothing with pride, and don’t be afraid to spin in a circle with your arms in the air; don’t let anyone, sighted or blind, advise you on what looks “normal”, even if your observers’ opinions might matter. Of course, one should be prepared to demonstrate the proper level of indignation should people marginalize a blind person when they behave this way. There is a certain glory in abnormality; learn to embrace it.
  7. Following the above, a good blind person is always totally content with is or her lot. Anyone lamenting the fact that they cannot see for any reason (even for matters of practicality) can only be unable or unwilling to accept his or her true identity. If one seeks a cure, one is turning away from the Community that would otherwise have nurtured and protected them from all outside forces. Being blind is wonderful in its way, and if one is not specifically proud of themselves in the concept of one’s blindness, serious issues will arise. Persistently indulging in such thoughts will result in an outright betrayal of oneself and of one’s Community.
  8. A good blind person should treat the sighted population as the strangers that they are. They are not like us, no matter how much we may want them to be. They are even inferior in some ways—with their groping about in the dark, their constant reliance upon their fallible vision, and their insistence upon worrying about silly things like physical appearance and blending into the landscape. It is perfectly acceptable to mock them with epithets like “sightie” or “sightling”. Sighing over their peculiarities and failings is encouraged. While they are convenient to have around, they are not our peers. Do not ever think otherwise.
  9. A blind person must accept that true competence is beyond them. One does not have to cook, clean, or keep house for oneself. One is not under any obligation to work, or play a productive role in the wider society. All that matters is that one is an active and useful member of the Blind community. Escaping into the sighted world and trying to carve out an existence there is a most grievous offense.
  10. A good blind person remembers that we live in a sighted world, but that there is a separate Community to which we all belong. All that is outside this Community is frightening, hostile, and cold. We will never find happiness or success there. Because we have been severely disadvantaged and are destined to lead diminished lives, we must remember that society owes us the luxury of getting more out of life than we put into it. Even if we mostly dismiss the sighted world at large, we should still recall that accessibility is our right, inclusion our privilege, and admiration our due. Disability sets us apart, and that we must respect; we are not like them, and they are not like us.

Things That Go Buzz In The Night

Summer is drawing to a close, and to make myself feel a little better about the autumn chill in the air, I’m going to take this opportunity to discuss creepy crawly buzzy creatures you only find during the otherwise idyllic summer months.  Who knows? It might just make you feel better about the impending cold, too!

 

 

Insect phobia, also called entomophobia, is one of the most common phobias worldwide. Its effects can range from irritating to crippling. Some people won’t even leave their houses for fear of encountering even the most inoffensive of insects.

 

I didn’t always identify as insect phobic, reasoning that my fears did not impede my life enough to qualify as bona fide phobias. I’ve since changed my mind, and use the label quite freely. I am irrationally afraid of many different types of insects, and being blind can add a further dimension to this fear, making it harder to cope with and more severe.

 

Sometimes, coping with insects when you’re blind is no more difficult than it would be for a sighted person: as you’re lying in bed, drifting off, the insidious whine snaps you back to alertness. Then, you search vainly for the mosquito, intent upon murdering the insolent little nasty before sleep is possible. Turning on the light doesn’t help; the mosquito usually vanishes until darkness returns. Mosquitoes are easy enough for blind people to kill. They’re usually too stupid or too slow to escape a swat once they’ve landed. (I’m not yet at an emotional point where I’m fully capable of letting mosquitoes get near enough to land on me at all, but I’m working on it.)

 

Unfortunately, it’s another matter altogether where bees, wasps, hornets, and other bugs are concerned. There are generally several tasks that blindness makes more challenging. First, you have to identify the insect. What are you dealing with? Is it a mellow bumblebee, high on nectar and enjoying life? Is it a slightly more threatening honeybee, looking for a snack but not unwilling to attack if frightened? Or is it—horror of horrors—an evil little wasp, just waiting to launch its vile assault?

 

Second, where is it? Sometimes, insects that make especially loud noise can seem closer than they actually are. Is the bug near enough that any sudden movement will disturb it, or is it far enough away that escape is possible? And do you dare find out?

 

Third, how should you go about eliminating the threat? I’m as big a bleeding heart as anyone I know, so my first instinct is usually to put a harmless spider or lady bug outside rather than ending its little wee life. I’m not near as philosophical when it comes to creatures that buzz, however. My fear of insects is sometimes so acute that the mere sound of an insect—even a house fly—will set me so on edge that most thought processes simply stop. I want to either escape, or see the creepy-crawly slaughtered (hopefully by someone who isn’t me).

 

I’m not alone, either. Alicia tells me that she finds the mere idea of being trapped in an enclosed space with an unidentified insect terrifying in itself. If there’s an insect in her house, she’ll avoid it rather than trying to kill it or put it out. Even worse, she hates the knowledge that she may not know a bug is around until it crawls on her, at which point she has no warning, no sense of what the bug might be, and virtually no time to evade it.

 

Once, while alone in a car, I noticed that there was an awful lot of buzzing going on directly behind my head, right against the back window. I knew there had to be at least four or five different insects there, but I wasn’t entirely sure what they might be. They sounded like they could be flies, but they also could be bees or wasps for all I knew. Positively quaking with fear, I hunched down, put my head between my knees, and stayed curled like that until my friend turned up. “Oh my God!” he exclaimed, opening the car door, “There are about six bumble bees in here!”. … I still shudder at the thought.

 

I’ve been by turns laughed at, scoffed at, sympathized with, and coddled because of my all-consuming fear of big buzzy things. While a lot of the fear is quite normal and part of being human, some of it is directly related to being blind, and I wanted people to understand that feeling as much as possible. It starts to make a tad more sense once you step into my shoes for a moment. Keeping in mind that not all blind people react this way (my boyfriend, for instance, feels little more than irritation with most bugs), I beg my readers to cut me some slack when it comes to things that go buzz in the night.