Month: November 2014

I Apologize For The “Inconvenience”

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I call you for the third time this week. I’m crying. I’m soaked with rain, and windswept, and utterly lost. There isn’t a soul around and I have no idea how I’m to get home. My phone is dying, my gps is no help, and I’m standing under a tree’s meager shelter while thunder explodes in the sky above. I feel like a complete failure. I’ve been getting lost so often lately, but then again this is a brand new neighbourhood. It’s the first time I’ve ever used transit in my life. I’ve lived here only two weeks, and barely have a handle on the route to and from work. I’m begging you to help me. And you do—but first, you tell me how inconvenient this is for you—that you’re getting awfully sick of it.

 

I sit hopelessly at my desk, explaining for the umpteenth time that the tactile diagram in front of me just doesn’t make sense. I’ve tried and tried to understand it, but it just doesn’t click for me. I am close to tears. I am failing this unit, and I know it’s not because I’m stupid, or bad at math, or lazy, or any other thing you care to name. I’m failing this because I’m unable to use the tactile diagrams that make so much sense to you. Hell, one of my sighted friends—a math whizz if ever there was one—can’t master circle geometry either. In a fit of frustration, I grab your hand and place it on the paper. “Feel this? Does this make any sense to you at all?”. You don’t speak. “Well? Does it?”. After a pause, you admit that it does not. You admit that this unit isn’t all that important anyway and that you’ll just have to waive it. But as you make this promise, you take special care to mention how inconvenient this is for you—that you really have no idea how to go about teaching me this material.

 

We’re having lunch, and you invite me out for drinks a few evenings from now. I casually mention that I’ll have to have a hunt for my ID; it fell out of my purse the other day and onto the floor of my suite. I still haven’t managed to find it. It’s probably off in a corner somewhere, but it will take a lot of scrabbling around for me to find it, and I just haven’t gotten around to it yet. It’s small, and easily buried or kicked or overlooked. You offer to come and help me look for it—something I’ve neither asked for nor welcomed, even—but first, you are sure to tell me how inconvenient this is, and how I’d better have a good search for it before you waste your time. I immediately lose my appetite and go home soon after. We never did go for those drinks.

 

I lean forward across the table separating us, entreating you to rethink your position. I lay out all the possible adaptations we could use to make this vital course accessible. I outline my hopes for the future and my goals for my degree. I assure you that if it really isn’t working, I’ll drop out and say no more about it. I am quite certain I probably sound pathetic and desperate, but I don’t much care. The truth is, I am desperate. I can do this course; I know I can. But you aren’t  so sure. You repeat that it’s nothing personal, that you’d love to help, really…but you only have so much time in the day. You only have so much energy to devote to one student, no matter how eager and dedicated. Really, it’s all very inconvenient for you…

 

I’m in the back seat of your car while you drive me to yet another engagement I can’t get to on my own. It’s a rural area. There are no buses, or cabs, or trains. It’s snowing, and bitterly cold. You didn’t want to go anywhere this evening. You’re grumpy and miserable about the whole thing. Of course, you give me a ride, because you know I don’t have an alternative, but you grumble to yourself about how inconvenient it is for you. I curl into myself and try to ignore it.

 

Every day, it’s something else. I never know what it will be today, but I know there will be something. You are displeased. You are ranting. You are telling me how frustrating it all is. You are cataloguing every way in which I am a burden. I create more work for you simply by existing–simply by being a flawed human being with, let’s be frank, special needs. Inconvenient needs. My eyes well up, because I am eight years old and all I want to do is please you—please everyone. You lash out, telling me to stop crying immediately. I put my head down, as it’s the next best thing. All the while, you continue, because I am ever so inconvenient. If my eight-year-old heart had the courage it ought to have, I would raise my head, tears and all, and remind you that while my blindness is awfully inconvenient for you, …it’s awfully inconvenient for me too. After all, I live with it. Every. Single. Day. I make it work, and usually I don’t mind much, but yes! It does make life a wee bit tough sometimes. I’m not unaware that it gets in people’s way, and I really am sorry about that. But as difficult as it is for you, it is ten times more so for me.

 

Think about that. Then, come tell me how inconvenient it is for you.

Out of the Frying Pan and Into the Fire

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As my Canadian readers may know by now, the CNIB is circulating a petition asking the government of Alberta to take responsibility for its visually impaired citizens in a way it has never yet done. For the last century, the CNIB has shouldered all rehabilitation service for the province’s blind population including orientation and mobility, independent living skills, low-vision assessments, deaf-blind services, etc. On a national scale, the CNIB has also provided library services for all blind Canadians, relieving public libraries of the responsibility of providing accessible materials.

 

For those of you unfamiliar with the CNIB, particularly my American friends, it is a non-profit charity organization, relying on government and public funding to stay afloat. Stay afloat it has, though not without frequent setbacks, downsizing, and restructuring. More than once, the CNIB has hinted that they may have to shut down their library because they could no longer afford to maintain it. For dedicated bookworms like me—particularly for braille-loving bookworms—this is an unwelcome prospect.

 

As of April 2016, Alberta’s CNIB branch will no longer be providing rehabilitation service to Albertans; instead, the organization wishes to encourage and assist the government in taking up the job themselves. I can see the logic: in our current medical system, if you have been paralyzed from the waist down, you are given rehabilitation therapy. You’re not just sent home, pointed towards a charity, and left to your own devices. If you are blind, though, you can be sent home immediately after you have been pronounced healthy, and there isn’t even a legal obligation to point you towards the CNIB. Imagine the shock and devastation of being newly-blinded, only to be dismissed from the health care system with no instruction on how to get around, cook, clean, or even figure out how to organize your own belongings. It’s doable, of course, but many newly-blinded adults (as well as small children who have been blind from birth and are just figuring out the world around them) need the service that CNIB provides. My question is, will we be worse off once the responsibility changes hands? If we go by the current state of the Alberta health care system…there’s a good chance the answer is yes.

 

In theory, it’s a wonderful concept: if the government adopts a similar system to the one in the US (where rehab services are funded and administered by the state, not by charity) there is much less chance that the money will simply run dry one day, leaving everyone stranded. The CNIB can turn its attention and energy to other matters while the government pays for the necessary care of its own citizens—citizens it has gotten away with mostly ignoring for the last 100 years. Instead of relying on relentless fund development campaigns to make sure I receive the services I need, I now only have to present my Alberta Health Care card to be shown a new route, or be assisted with a new work situation.

 

Here’s where the fairytale dissolves, though: the health care system is far from perfect. Even emergency medical care is flawed beyond what I could possibly describe in this post (or any mere blog post, really). You can wait hours and hours at the ER just to receive basic and essential care when you are desperately ill. You can wait months (or even a year or more) to undergo tests and surgeries if your condition is not considered immediately life-threatening. Sure, you can fasttrack and go private, but that sort of defeats the purpose of our wonderful socialist care system, right? Isn’t that the whole point?

 

Things are already pretty bad under the stewardship of the CNIB, at least for many Albertans. I grew up in Northern Alberta, and CNIB specialists were only able to travel to me on a sporadic basis for an hour or two each lesson. Eight hours of driving for them, and only two or three hours of training for me. When I was a child, they were very helpful and supportive of my parents, but once I got older and needed Orientation and Mobility training, they simply didn’t have the resources (human or otherwise) to serve even my most basic needs. I was fourteen before I was taught precisely how to use a cane properly, and about sixteen before I knew how to cross a freaking intersection with any degree of safety! My transition to the city at seventeen was rocky, to say the least.

 

Even when I moved to Edmonton, though, things weren’t a bundle of roses. Currently, there are only two O and M specialists serving the Edmonton area, and one of them does not work with adults at all. Oh yeah, and they are not exclusively tied to the Edmonton area; one of them goes out to Northern Alberta to assist rural clients. So, you have one full-time specialist serving the entire adult blind population of Edmonton. That might sound reasonable enough, but I can tell you that getting O and M service is an absolute nightmare. Unless it’s an urgent school-related situation (they won’t even help you with work, I tried), you could wait months to receive training unless you are ridiculously persistent. There is a triage method of sorts—the most important cases are theoretically dealt with first—but that kind of thing can easily be manipulated. If your situation is less grave than someone else’s, but you are very persistent or persuasive, you might receive service more quickly.

 

Arguably, the impersonal nature of the Alberta Health Care system might help mitigate some of these problems…but I really do think we may be going from bad to worse. For one thing, we already know the triage system is flawed; how much more flawed will it be for rehab services, which are not considered necessary for one’s actual health? Sure, it’s inextricably linked with quality of life, but who has the time or money to worry too much about quality of life, right? Quality of life is for rich people, or at least people with full health benefits. My suspicion—and it’s my personal suspicion, no one else’s—is that we will still be waiting months to receive vital service; we will still be competing with others for priority treatment; we will still struggle to get what we need and may resort to figuring it out ourselves. For many of us, it’s simply easier to get some sighted friend to walk us through a route until we figure it out. It’s slow, and not quite as safe, but many of us are capable of it.

 

So, I will probably be okay. I will probably not feel the lack when the system switches over (if it switches over—do remember that the government has made absolutely no promises). But what about the seniors who suffer from macular degeneration and need help learning how to perform basic tasks all over again at 85? What about the mother of a newly-blinded teenager who has no idea where to turn? What about the parents of that two-year-old they have just realized is blind? Who will support them?

 

This isn’t just about me; this is about everyone who has ever relied on the CNIB for anything at all. They have been such a strong and capable presence for so long that the government has, I think, gotten complacent. I fear for those who will need support in the coming years but will probably not get it. I fear for those who currently hold jobs at the CNIB who may be sent packing—special training and all—when the government decides, as it may, that any person at all can safely do O and M or Independent Living Skills instruction. I fear for the parents, teachers, and employers who may require support and guidance in making accommodations, and will have no one to ask. Maybe I’m wrong: maybe the government will swoop in, save the day, and give us even better service than the CNIB ever could. Maybe. But I’m scared. Really scared. I really do think we’re jumping out of the frying pan…and right into the fire.

You Should Get a Dog, Because…

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I never intended to write more about the guide dog issue, both because the blog title itself and my introductory post should speak for themselves. However, I decided to address something that has been plaguing me for years, and that I’ve only just been able to fully articulate. You see, I can handle other blind people encouraging me to get a guide dog; they have them, they love them, so it’s only natural for them to nudge me toward it. Most of them are happy enough to respect my decision once I’ve asked them to stop. The public, on the other hand…

 

Ever since I can remember, people (family, friends, and even strangers) have been telling me to get a dog. Sometimes, they even have reasons that sound great on paper like “improved independence” and “safety” etc. Here’s the issue, however: when people give these reasons, they are either poorly-researched or entirely irrelevant to my needs as an individual. They often give reasons they themselves might want a dog if they could have one, failing to consider my own needs and preferences. While they don’t mean to be either, shaming me for not wanting a service dog is hugely selfish and judgmental.

 

Below, I will list some of the most common reasons people have given me, with my usual explanation as to why they don’t apply to me (or, in a few cases, why they are not even worth considering). It is my hope that after this post, those who have read it will understand my position and, more importantly, that that decision is personal. Here goes!

 

“You should get a dog, because it will make you so much more independent!”

Actually, the answer to that is yes and no, with an emphasis on “no”. It is very true that guide dogs can enhance independence by allowing for more fluid travel, particularly when unexpected obstacles (like construction or snowbanks) get in the way. While I’m fumbling around with my cane, the guide dog handler next to me has already found her way around the obstacle and is skipping along, happy as can be. It’s also worth noting that many guide dogs are trained to find certain objects like garbage cans, empty seats, counters, and doors. This is very handy when you’re navigating a somewhat unfamiliar area and you want to do so with some grace. So, does a guide dog make you somewhat more independent by default? A little, yes. Do I need that particular independence? Not so far. As it stands, I don’t venture into many unfamiliar areas on my own, simply because there hasn’t yet been any need to. I also don’t typically have trouble finding doors or empty seats, so what little independence a guide dog would give me wouldn’t really be worth having another living creature accompany me everywhere I go for the next decade or so. I suppose one could argue that a guide dog would make my travel more graceful to watch, but I can’t say I care much about that particular perk.

 

“You should get a dog, because you’d always have companionship!”

Yes, people have actually given me this one, and it’s not just a fluke; I get this all the time. I figured I’d get this one out of the way early, because it will set the stage for some similar arguments. First of all, keep in mind that guide dogs aren’t just puppydogs with a few months of training and a fancy harness. These dogs are trained rigorously for years; this training costs thousands of dollars, and takes time, patience, effort, and skill. You could be on a waiting list for years, while they try to find you a suitable match. Even when your match is found, there is no guarantee that you and your dog (called a “team”) will be successful. Sometimes, temperaments don’t mesh, and you need to keep looking. Furthermore, once you receive your new teammate, you must spend the next months (or even years) training together. Every day is an exercise, bringing with it new challenges and opportunities. It’s a joy, but it’s also a ton of work. So, all this in mind, do you still think I should get a guide dog…for the companionship? If I want companionship, I’ll get a goldfish.

 

“You should get a dog, because you’ll get so much positive attention!”

Excuse me, what?

Yes, I understand that people are drawn to service dog handlers. Well, they’re drawn to the dogs themselves, and the handlers just happen to be there. I have even seen examples of blind people being mistaken for each other because they both have dogs; this proves that people often see the dog long before they see the person, assuming they see the person at all. Yes, people will come over and ask you what your dog’s name is, and want to pet him, and coo over how adorable he is. Yes, people will probably think about talking to you on the bus because instead of a weird stick thing, you have a cute little puppy for them to gush over. And, yes: walking around with a cane usually gets me either ignored or asked whether I need help. I rarely get “oooh how lovely! You have a cane!”, for obvious reasons. All I’ll say to that is, if people will only give me their courtesy and attention if I have a cute doggy with me, I don’t want their attention at all.

 

“You should get a dog, because then you’d have protection in scary neighbourhoods!”

I struggle with this one, because it’s usually put forth by people who know me, care about me, and want me to be safe. I grew up in a very rural area, and moving to the city at seventeen put some of my family on edge. I think they assumed I’d be walking the dark streets of downtown Edmonton wearing “target!” on my forehead. While it’s true that I fit most of the requirements for a vulnerable citizen (very long hair, small build, disabled, female—need I say more?), I don’t find myself in constant danger. Certainly, having a protective dog that will growl menacingly every time a suspicious person comes near would be reassuring, but would it really be worth being responsible for a dog 24/7—one that I don’t even need or want—just so I can feel safe in the dark scary night? Nuh uh.

 

“You should get a dog, because then you’d never get lost!”

Oh, how very, very misguided this person must have been. Guide dogs do tend to memorize routes the more you navigate them, but you still have to know where you’re going. A dog is not a GPS: you can’t tell her where you want to go and have her pull you along. Dogs can’t tell you which bus to get onto or even where that bus is. All they can do is ensure that you don’t bump into anything or stray into traffic while you find your destination. True, they will eventually know exactly how to get to work, school, and other frequent destinations, but otherwise they are relying on you, the team leader, to give them instructions. Guide dog handlers still get lost; they still have to memorize routes; they still have to know where they’re going and how to get there. A guide dog is not an easy way out.

 

“You should get a dog, because you love animals!”

I do love animals. You know those people who lose their minds as soon as something cute and fluffy is nearby? That’s me. I’m the one on my knees, cooing, making a total fool of myself because I’m already too lovestruck to keep my composure. I grew up with dogs and cats, and I get very, very lonely for my animals sometimes. That being said, not wanting a guide dog does not automatically mean I don’t like animals. Some have even insinuated that choosing the cane means I simply don’t want to take care of another living creature that isn’t me. This couldn’t be farther from the truth: I’m ridiculously maternal at times, and once I can have pets again they will be very spoiled indeed. Once again, we come back to cost-benefit analysis. Is it worth getting a highly-trained service dog just because he’s an animal and I’d adore him? Absolutely not. You should get a service dog because you want one; because your lifestyle is conducive to having one; because you require the added independence; because you really want fluid travel; because you hate the cane and love traveling with a guide. You should not get a service dog because “it’s sooooo cute!”. That would be terribly irresponsible, no?

 

“You should get a dog, because mature, independent blind people all have dogs!”

This one is admittedly rare, but I’ve definitely heard it, even from people who knew almost nothing about blindness in general. I think the misconception is that blind children start off with the cane, become very skillful travelers, then immediately graduate to a guide dog as soon as possible. The cane is treated like a set of training wheels, if you will, designed only to get you used to traveling. Once that’s done, you can get a dog and be a “real” blind person. This, of course, is total BS. I know many, many capable blind travelers who only use canes; I even know some who had a dog for awhile and switched back to the cane because it suited their needs better. Aside from the fact that the notion of “good” versus “bad” or “fake” versus “real” blind people is hardly worth anyone’s consideration, no one knows my travel needs better than I do, full stop. This has been a recurring theme on this blog, and there’s a reason for that: at some point, people must accept that when it comes to my disability—my individual disability—I know better than anyone. That’s not an effort to be arrogant or dismissive; it’s just truth.

 

Let me state once again that I understand why people encourage me to get a dog. They are well-intentioned people who want me to be safe, happy, and capable. What they don’t realize, of course, is that their definitions of same may be different from my own. I don’t intend to offend or alienate anyone with this post; what I want is to help my sighted readers understand that blind people know themselves best. I’m always open to new ideas, and I’m by no means an island. Still, if I’ve considered your opinion carefully, and still find it lacking, please don’t push. It will fall on deaf (ha ha) ears.

My Eyes Are Broken…But I’m Not

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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.