“We Respect Your Privacy (But We Can’t Guarantee It)”

This morning, I visited the dentist, which involved filling in a lengthy and deeply personal intake form. It demanded extensive sensitive information, and there was no way to guarantee my privacy. You see, these forms are still in hard copy, which makes sense for most people, but this meant I had to ask a hygienist to help. I had to tell her everything: my full medical history; the medications I was taking (which reveal a lot about me, I assure you); whether I was pregnant; whether I had an alcohol or drug dependency. On and on it went, and while I was certain the hygienist would respect my privacy, it was still uncomfortable to expose so much about myself. Luckily, I don’t have all that much to hide, but there are certainly a few things I did not relish discussing. To make it all worse, a relative works at the same office, and could easily have heard me. Yes, we were in a room by ourselves, but the door was wide open and I wasn’t exactly whispering.

It’s nobody’s fault, really, but I feel sure there is a practical way to design accessible alternatives in most contexts. Privacy was often a luxury I did not enjoy, especially a few years ago when almost everything was done on paper. In school, I took many surveys asking sensitive questions about the way staff treated me. I was expected to provide details about how safe I felt at school and whether I’d suffered any abuse. The survey was anonymous, but I did not have the opportunity to benefit from that. A member of staff was forced to fill in the survey for me, so was privy to everything I said. While I was generally quite satisfied with how school staff treated me, there were a couple of exceptions and I did not feel I could mention them. My educational assistant was usually the one who assisted me, so I trusted her to keep what I’d said confidential. Even so, it bothered me more than I thought it should.

I’ve already discussed the effects of inaccessible debit machines, and how they require blind people to reveal their pin numbers to complete strangers. I’m not a distrustful person by nature, and I believe that most people are trustworthy. This does not justify the risks, though, and it’s time we figured out how to keep this from happening.

Aside from privacy risks, it’s common to encounter inaccessible forms, even in places where there is very little excuse. For instance, some customs forms at airports are filled out via a computer that is not equipped with any assistive technology, and many others are still in hard copy. So, we have to enlist a customs agent or flight attendant to do it for us, and this should not be part of their job. While I’m quite at peace with sharing information about why I was visiting the U.S. and whether I’ve frolicked with any livestock recently, it’s an outdated system that does not belong in 2016.

Most likely, the solution will have to come from blind people themselves. We know our needs best and our in a position to lobby for better systems. I hope someone finds a solution; right now, I’m fresh out of ideas.

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Thank You For The Freedom: Or, Why You Shouldn’t Put Blind Kids In A Bubble

My parents did me a great service: they refused to put me in a bubble. I was rarely told, “I don’t want you doing it, it’s too dangerous.” As a child, I was fearless. I’d try anything, as long as my dad was there to provide assurance of safety. I took risks with very little anxiety. I was so accustomed to freedom that I could not imagine what being sheltered would feel like. I was fortunate indeed. Many blind people are placed in bubbles by overprotective parents, never permitted to engage in even low-risk behaviour. This is detrimental to any child’s development, even for a disabled one.

I was blessed with family and friends who included me in just about every game, even when it meant they’d have to slow down a little. I thought nothing of playing tag, (I hit a post or two at top speed, but I was more inclined to laugh than cry), ran recklessly through bushes to play hide and seek, and dove gleefully off haystacks. I played cops and robbers, sometimes skidding across a sidewalk and sustaining mild injuries. I tumbled from out-buildings that lacked steps, and fell off swings. I even tried my hand at a few sports, and received more than one blow to the head during dodgeball. I had a great time through it all.

I believe this liberty to try and fail, to flirt with just a little danger, shaped my character. It made me into a stronger, more confident person. I am less sheltered and less afraid of the world in general. I had the opportunity to experiment and I remain grateful to this day. I got to have unbridled fun, just like every other child and, while I was sometimes excluded, I enjoyed equal status far more often than I didn’t.

I understand that parents are more safety-conscious than ever before. Safety regulations abound, and if you leave your child in a car for more than about thirty seconds, you might receive a visit from police, courtesy of some concerned citizen. While I’m thankful that kids are safer than they’ve ever been, I deplore the tendency to shelter disabled children to excess. Parents go to extraordinary lengths to keep their children secure, and it stunts their personal growth. These children grow up to be more fearful, anxious adults, unfamiliar with risk and convinced they cannot enjoy many of the same activities as their peers. They’ve never experienced the rush of running full speed ahead, swinging sky high, or chasing a soccer ball. They’ve never done back flips off haystacks or nearly flown off trampolines. To a small extent, they haven’t had the chance to live, play, and grow in the same ways I did.

So, I want to thank my parents for giving me my freedom, and I want to urge other parents to follow their example. Letting children have a little low-risk fun is not neglect. It is, in fact, a form of special care, because you are putting their needs ahead of your fears. You owe it to your children, and they will be better people for it, I promise you. Life as a disabled person demands resilience and the willingness to face fear head on. Give them the best chance you can.

Goodbye, Colourful World

I usually identify as blind because it is easier than trying to explain what I can and can’t see, but the label isn’t entirely accurate. Technically, I do have a little vision, though not enough to recognize faces or read print of any size. LCA is slowly depleting the tiny amount of vision I was blessed with at birth, and I’m finally beginning to care.

As a child, one of my favourite activities was visiting the greenhouse on a warm June day, basking in the profusion of mellow blues, insistent reds and cheery yellows all around me. Many colours were beyond my visual scope even then, but as a child the brightest colours were still easy to see, and I relished them. I appreciated them most where I found them in nature: I discovered them in flowers, in crushed autumn leaves, and even in fruit bowls. I became confused when trying to see the soft green of an apple, but had no difficulty appreciating garish carrots and sunny lemons. While I didn’t exactly understand beauty, I did understand the vibrancy and immediacy of colour, and I remained fascinated for many years.

As my vision is slowly eaten away, however, my cones (colour-sensitive cells of the eye) are deteriorating. My peripheral vision is all I ever really had to begin with, and as that disappears, my ability to distinguish colours is fading with it. Where once I could easily separate bright yellow tank tops from pale pink ones from white ones, I now struggle. If I tilt my head just so, and squint my eyes just so, and say the magic incantation just so, I can sometimes tell. Other times, however, no amount of adjustments of lighting or head position will quite do the trick, and I’m left just a little unsure. My world is turning, ever so gradually, into one of shades. I no longer notice bright colours unless they’re called to my attention. I could be gazing straight at a bright red apple, but it looks black until I concentrate. Only then does the red hue show itself. Mostly, I’m okay with that. … Mostly.

Occasionally, I allow a little sadness to steal over me. It’s not just colour I’m losing, either. Just this evening, I was looking down at my parents’ black dog. He was sprawled on the carpet, enjoying a luxurious nap, and I realized I could no longer see the entire length of his body without moving my head. My field of vision is now so narrow that I cannot even see an entire hand’s breadth without difficulty. It’s a small thing really—being able to see the length of a dog’s body is not exactly a life-saving perk. Even so, after so many years of knowing things would change but not really dealing with that knowledge, I’m suddenly forced to face it head on.

On the bright side, the loss is proceeding at a snail’s pace. It takes several years for me to detect a significant decline, so I feel quite peaceful about the whole process. My brain is learning to accept the loss little by little, and I’m learning right along with it. Since my vision was never of much practical use anyway, I’m not nearly as distressed as one might expect me to be. Certainly I’m not fantasizing about a cure or composing laments every other day.

But sometimes…I miss the flowers. I miss the ability to sort laundry without any effort at all. I miss the gentle gold of the sunrise and the fiery orange of the sunset over the trees. I don’t know if I’d call these things beautiful, exactly—it’s not beauty I was seeing—but I would call them, well, intriguing. Bit by bit, my world is becoming less vibrant.

Sure, I still have sound, and scent, and touch, and taste, and all the rest of it. No, I’m not awash in grief over the whole thing. I’ve always known it would turn out this way, and I’m thankful that I was ever able to see those flowers and those apples and those sunsets—or my version of “seeing” them, I suppose. It’s important to remember that I really had very little beyond colour to appreciate visually. Even at birth, I had but a tiny fraction of what sighted people have. But, yes, I will miss the colours.

It’s lonely, sometimes. I have a lot of totally blind friends, and they simply can’t empathize. Paradoxically, my sighted friends are even less able to do so, because they find the idea so horrifying. How could I possibly feel mild nostalgia rather than all-consuming heartbreak? I feel as though I’m not quite a real member of the blind-person club, all because I know what red looks like. I do belong, functionally speaking: I can’t read street signs or take photographs or even recognize my mother’s face. Despite the fact that my life ticks most of the “blind” boxes, I feel just a little isolated, as I sit on my living room couch and look down sadly at that dog.

It will be all right, of course. In general, I shall carry on as cheerfully as always. In general, I will not feel the need for sight or the longing for a cure. In general, I’ll continue to be a typical blind person. Every now and again, though, I’ll take a moment to bid a quick farewell to the colourful world.

The Cost Of Disability: Or, Why We Can’t Have Nice Things

Being disabled is expensive. Slap a label like “adaptive” or “assistive” on a product and the price skyrockets, just like that. It seems odd, doesn’t it? Exploitative? Yet, that’s what happens.

The free market was supposed to help us all. The invisible hand of competition was supposed to keep prices reasonable. We were supposed to have choice. Unfortunately, capitalism can’t accommodate markets that are too small to inspire competition, nor can it liberate us from monopolies that keep prices extortionately high. I don’t begrudge these companies the right to value the bottom line. People need to eat, after all. There’s such a thing as going too far, though. With basic Braille technology costing several thousands and wheelchairs so expensive you’d need a full-scale fundraiser to afford them, the landscape for low-income disabled people is grim unless they have access to substantial funding.
Considering that we have to use screen readers, wheelchairs and other assistive devices every day, it’s not practical to expect us to simply go without. We’re not a manipulative community whining about handouts. We really do need these products, especially in professional and educational contexts.

Living as a disabled person can incur significant costs when adaptable housing is needed. Installing adjustable beds and stair lifts can become staggeringly expensive, and for those living in low-income housing, proper accessibility is by no means guaranteed. It’s bad enough to be chronically unemployed and live in low-income housing; but living in a place where you lose much of your independence adds considerable insult to injury. Don’t even get me started on the markups on prescription drugs. Even life-saving drugs routinely sell at a 400% markup (100% is generally what is considered reasonable). It no longer surprises me when I see the lengths to which companies will go to monopolize a market and shamelessly exploit people who are already disadvantaged. We’re not asking for a pity party, to be sure, but a little reason would not go amiss.

We’re not the only ones affected, either. There are numerous grants available from governments and charities, which are intended to ease our financial burden. For example, the Government of Alberta provides $8000 a year which is spent on assistive technology and disability-related costs while I’m at university. You would think that’s overgenerous—I certainly did—but even during years when I did not buy any assistive technology at all, the entire grant was put towards paying for the editing of inaccessible textbooks. What is more, the grant did not even meet the full cost; my university covered the rest. It makes my head spin a bit, it really does. Governments are well and truly stuck, because manufacturers of accessible products have few incentives to lower their prices. Why mess with a business model that is working so well? There is more competition than there used to be, it is true, but for the most part, prices remain astronomical.

Worse still, these companies have managed to convince charities and governments that their most expensive products are the best, in any situation. Even though there are other viable options out there, many school divisions and universities insist that JAWS, one of the priciest screen readers, is the only wise choice. Encouraging this view is advantageous, so companies are happy to charge what they do, knowing that someone will gather the necessary funding.

The little things bother me, too. Take watches, for example: very few stylish accessible watches exist. Most are either obnoxious talking watches that draw a lot of unwanted attention (and make startling bonging sounds when you’re not expecting it), or braille watches (which aren’t braille at all, but tactile). These watches are generally affordable enough, but they are seldom fashionable. This may seem like a frivolous gripe, given the more serious struggles we face, but why can’t we have nice things? Why do we have to wear tacky accessories just because we’re disabled? I’m not a huge fan of braille accessories, but a lot of blind people are. Why can’t they have more legitimate selection? I mean, have a look at these charming braille hoodies: they say things like “peace”, “joy”, “Jesus”, and my personal favourite, “Can you read this?” The site boasts that you can “spark conversations with total strangers!” Uh, no thanks. If I really want to spark conversations with strangers, I’ll get a dog.

Simply having a disability is financially and socially punitive, and there are many who are happy to capitalize on the issue for personal gain. Certainly, this willingness to exploit customers is not unique to assistive technology companies. However, the problem is compounded when we’re forced to purchase necessary products, much as we wish we could do without them. It’s encouraging to see how many grassroots attempts to provide affordable adaptive products and services are emerging now. I am immensely proud of open-source screen readers and inexpensive mobile apps. We’ve come a long way. Nevertheless, I don’t think it’s wise to ignore the nasty elephant in the room: being disabled is prohibitively expensive, and few people know it.