Wednesday, November 21, 2012

How Do You ... Get Around?

This is the third installment in my series of posts called "How do you ...?" designed to answer some questions I frequently get about living as someone with a visual impairment. The first two posts in this series covered how people with visual impairments use computers and how people with visual impairments read. Future posts will include how people with visual impairments manage diabetes, how people with visual impairments accomplish everyday things around the house like cooking and cleaning, and (newly added thanks to a reader suggestion!) how people with visual impairments participate in exercise and sports. If you have any ideas or questions that I can cover in future posts, please comment!

Getting around a busy urban environment. For people who are losing vision, getting around is probably the most scary aspect of the process. For people who have low vision, using a white cane is probably one of the most psychologically-ridden decisions they can make. And for people who aren't blind or visually impaired, getting around is probably the aspect of daily living most shrouded in myths and misconceptions. Do people develop super acute hearing as they lose their vision? Do they count their steps to get from Point A to Point B? Should I (as someone who is sighted) help when I see someone with a white cane standing at a street corner? Do guide dogs automatically lead their handler where they need to go?

In this post, I will answer all of the above, and give you some insight into how people navigate indoors and out with little or no vision.

First off, no one who is blind or visually impaired is handed a white cane and told to go out on the streets and hope for the best. Just as someone with a spinal cord injury will get rehabilitation services, someone who is visually impaired has access to a plethora of rehabilitation services. The exact system varies by country, and there are ongoing controversies about how services should be funded and delivered (right now, in Canada at least, all vision rehabilitation services rely on non-profit organizations, which is far from ideal). One of the specialists encountered will be an orientation and mobility (O&M) instructor. An O&M instructor will teach someone the skills needed to know where they are and stay oriented in the environment (orientation) as well as the skills necessary, and the use of any necessary tools such as a white cane or monocular, to navigate safely through that environment to get from Point A to Point B (mobility).

(I will note here that I am not an O&M instructor. If you happen to be reading this as someone who is blind or visually impaired, please seek the services of an O&M instructor to learn how to travel safely. Do not take this post for any kind of professional advice!)

So, without further ado, I'll get on to how some of this stuff actually works.

First off: orientation. Right off the batt I'll tell you that people who are blind and visually impaired do not have any kind of enhanced hearing, smell, taste, or touch. People with visual impairments use these senses more, and so we gain more practice in paying attention to them, but that's it. Anyone could learn to feel braille dots or hear the flow of traffic on the street if they practiced enough, most people just don't have the need or interest to do so.

The built environment is so visual that many people think it must be impossible to navigate non-visually. In keeping oriented, people with visual impairments use many non-visual cues. Rather than visual landmarks, people with visual impairments rely on sound, tactile, olfactory, and kinesthetic landmarks and cues. Sound cues are easy to pick up—the sounds of traffic letting you know you are approaching a cross street, the sound of squealing brakes letting you know the bus has just pulled up to the stop you've been waiting at, the sound of a fountain letting you know you have reached the front doors to your office building. Tactile cues and landmarks can be found with the tip of a cane or with a hand or foot. A technique called "trailing" involves running the back of a hand along a wall or other surface to locate an object such as a water fountain or display case.

An O&M instructor will teach different "cane techniques" for use in different situations. The standard "two point touch" is what you see when someone is walking down a street rhythmically tapping their cane back and forth in cadence with their steps. Other techniques allow the cane user to get more information about the texture of the surface they are walking on, or to scan to the left and right of the path they are walking on to look for intersecting paths or other landmarks such as fences or signposts. When walking up or down stairs, the cane is held in a specific position so that the user will know a step or two ahead of time when they are about to reach the top or bottom of the staircase. These are all various types of tactile cues and landmarks.

Olfactory cues are something everyone notices when they are good—the smell of bread from a bakery, the smell of popcorn at a movie theatre—but most people don't notice much on a daily basis. The next time you talk a walk down a city street with stores, take note of all the smells! A clothing store and shoe store and hardware store all smell very different. Smells may not be the most-used sense in O&M, but it can definitely provide some useful information a bout where you are and when you may have reached a landmark or destination.

Kinesthetic landmarks include things involving movement, like going up or down a ramp or sensing that a street is curving slightly to left. When I was first learning to take the bus to school as a preteen, my cue that the bus was coming to my stop was that it came up the crest of a hill and levelled off right before it stopped. (I didn't realize until I was in my late 20s that people who are sighted can actually read street signs to tell where to get off the bus. I fiured most of them used landmarks like me, except smaller visual ones, to tell when to get off, and didn't realize that they could actually know their exact location at any given time.)

Of course, most people with visual impairments do have some degree of residual vision, and therefore in addition to everything listed above can use their vision in staying oriented in the environment and navigating from place to place. This vision may be anything from the ability to tell where in a room a window is to being able to see crosswalk lines to being able to see traffic signals to being able to read street signs with low vision devices. For those who have enough vision, magnification devices such as monoculars (basically small telescopes) are available that allow viewing things like street signs, traffic signals, and bus numbers from a distance.

Speaking of residual vision, the white cane is often one of the biggest hurdles for people with vision loss. Picking up a cane feels (at first) like accepting defeat, relenting to a disability, admitting that you are blind, and shouting to the world that you are (at least perceived as) vulnerable. It is a HUGE psychological hurdle, perhaps even the biggest hurdle in the adjustment process. Many people with low vision do something called "passing" where they pretend to see much more than they actually can. They walk down the street carefully watching the movements of people ahead of them to figure out when a curb or flight of stairs is coming. They pretend they forgot their glasses when handed a sheet of printed paper they can't read. They nod and say thank you when someone gives them directions, even though they have no idea where "the yellow sign over there" might be. Often, they accept that they may look foolish or oblivious, because (to them) that is preferable to looking blind.

In reality, the cane should be seen by society as a symbol of independence. A cane signifies confidence, strength, independence, and freedom. People do not need to be totally blind before they will benefit from a cane. For those of us with low vision, a cane identifies steps and curbs, helps in situations where lighting is not ideal (which happens a lot), and communicates easily to others that we can't see well. There may be misconceptions we have to deal with, but it's better to deal with them and educate people than to hide and pretend we're something that we're not.

The process of O&M is so complex that it's nearly impossible to explain in a blog entry. Developing good O&M skills may take months or years, and the skills needed differ a bit by each individual depending on where they want to travel, their confidence level, and their level of residual vision. Simulation activities can give a better idea of what it's like to travel with a visual impairment, but these are used with caution because they tend to invoke a reaction of fear ("Wow, I cant believe how scary that was!") which is not the point. Of course, travelling with impaired vision may be scary at first, but it wears off over time. I am no more scared going out and crossing the four-lane, advance green (in Canada, this means a left turning lane), very busy intersection in front of my apartment building than anyone else would be. I just rely on slightly different information to tell when it's safe to cross; like the sound fo parallel traffic moving, the audible pedestrian signal sounding, the sound of cars in my path stopping, and whether other people are walking (although I never rely on another person walking as a sign that the light is in my favour).

So, you ask, what about guide dogs? Rather than learning all this stuff about different senses and white cane techniques, why not just get a guide dog and let them do all the hard work.

Well, the short answer is because guide dogs don't work that way.

A guide dog takes commands from their handler and then guides them around obstacles. The commands aren't broad ones, like "Take me to Starbucks." Instead, they consist of "forward," "left," and "right," among some other school-specific commands. Some handlers teach their dogs to find certain things like elevators and empty chairs. But beyond that, a handler still has to know where they are in the environment and has to know how to give their dog detailed directions to where they want to go. Where the dog helps is avoiding obstacles (instead of contacting them with a cane and having to negotiate around them), as well as avoiding overhead obstacles which a cane can't detect. A dog will also stop at curbs, stairs, and other changes in elevation. A dog doesn't help with crossing a street—the handler has to listen to traffic and give a "forward" command when it's safe to go. A dog is trained, however, to block a handler's path if they misjudge and attempt to step out into moving traffic (ditto if the handler should ignore the dog stopping and attempt to step off a flight of stairs, or step in front of a moving train, and so on).

A person goes about getting a guide dog by applying to a guide dog school and, if accepted, going away to live for a month on a campus where they will be paired and trained with a dog. The dog, by the way, already has the training by the time they meet their handler; they are raised by volunteer puppy raisers and are returned to the school for formal training when they are still fairly young. The month-long training at the school is for the handler's benefit, so that they can learn the commands and how to work with and care for their dog. Some schools also do home training. Although training a guide dog is expensive (thousands of dollars), there is usually only a minimal or no cost to the trainee. Most guide dog schools run entirely on donations.

Guide dog schools make a point of emphasizing that a dog is not a substitute for good O&M skills and good cane technique. In order to be accepted into guide dog training, a person who is visually impaired needs to already have solid white cane and travel skills. Schools interview applicants and make them run through a test route with a cane and with a mock dog (where the interviewer is at the other end of the harness) before they are accepted into training.

The decision between cane and canine is sometimes a heated debate among the blindness community. In the end, both methods have their pros and cons. A cane is low maintenance, doesn't get sick, and doesn't incur any cost. A dog requires daily care, financial resources, and a guide dog handler is often never left alone in public (as someone who used a guide dog for several years, I can attest to this!). For some people, getting a guide dog is a life-changing and life-enhancing decision. For others, a cane works just fine (in case you're curious, I myself do not plan on getting another dog in the foreseeable future). Interestingly, while most of the general public may think the majority of people with visual impairments (and particularly those who are totally blind) have guide dogs, the actual proportion of legally blind people who are guide dog handlers is well under 5%.

Hopefully this entry has given you some glimpses into how people with low vision or blindness navigate through the world. In case you are wondering about some ways in which you can help (or hinder) a traveller who is visually impaired, here are some quick tips:
  • Feel free to ask if someone with a white cane or guide dog needs help, but be prepared to back off if they politely decline.
  • Never grab someone's arm in an attempt to guide them, especially without asking them if they need help first.
  • If someone does request assistance, ask if they would like to take your arm (many people will have enough vision to simply follow you).
  • A guide dog is a working dog, distracting them is like someone distracting you while you're driving.
  • Never talk to or pet a guide dog while it is working, and especially never touch its harness in any way.
  • If you are a driver, never blare your horn at someone with a visual impairment; it's startling and confusing since they likely have no idea what the honking is all about, and they may be standing at a corner not crossing simply because they are trying to figure out what type of intersection they are at by listening for the flow of traffic
  • If giving directions, give specific directions (either cardinal or left/right) rather than using terms like "over there" or pointing, which have no meaning if you can't see
On a last note, you might have noticed a conspicuous lack of technology in this post. Unlike using a computer and reading and writing, orientation and mobility still relies on relatively old-fashioned tools of white cane, guide dog, and optical low vision aids. However, devices such as GPS units designed specifically for those with visual impairments (the Trekker Breeze being one example), electronic travel aids that warn of overhead obstacles, iPhone and other applications that are accessible to screen readers, and electronic aids built into the environment (such as audible pedestrian signals and talking signs) are all technologies that can help. Some of these, like GPS, are becoming relatively established, while others, such as indoor navigational aids (a challenge as GPS doesn't cover indoor environments) are still emerging. Regardless, navigating with a visual impairment will likely always remain relatively low-tech.

Wednesday, November 14, 2012

14 Things I Wish Everyone Knew About Type 1 Diabetes

There are many misconceptions and misunderstandings about Type 1 diabetes. In honour of World Diabetes Day (November 14), here are 14 things that I wish everyone knew about Type 1 diabetes.

1. Type 1 diabetes is an autoimmune disease, just like multiple sclerosis and rheumatoid arthritis (among many others). In Type 1 diabetes the immune system attacks and destroys the insulin-producing cells in the pancreas. There is no way of preventing Type 1 from developing.

2. There is no cure for Type 1 diabetes. Insulin is not a cure. Without insulin, people with Type 1 die, and ninety years ago--before insulin's discovery--it was a universally fatal disease. Insulin allows people with Type 1 to stay alive, and that's it.

3. Type 1 diabetes is a continuous balancing act. Imagine trying to manually control your temperature or heart rate all day, every day. It must respond and change throughout the day, but not too high or too low or you die. That's exactly what people with Type 1 are doing with their blood sugar.

4. Type 1 diabetes requires constant vigilance. There are no days off and no vacations, ever. Times when most people get time off—like parties or when they're sick with the flu—are times when people with Type 1 have to work twice as hard to stay safe.

5. Type 1 diabetes takes a lot of work. It's not only the blood tests and a healthy diet. Someone with Type 1 makes a diabetes-related decision every couple of hours throughout the day, and often several times during the night as well.

6. Type 1 diabetes is serious. Out of the dozens of diabetes decisions made during each day, it takes one wrong decision (or one wrong guess) to end up in a life-threatening situation. And that's not even counting the long-term complications all people with diabetes are at risk of developing.

7. Controlling Type 1 diabetes is largely guesswork. It is virtually impossible to take account of every factor that influences blood sugar, many of which—hormones, stress, even weather—people have little to no control over. Having "perfect" blood sugar control is impossible.

8. Someone with Type 1 diabetes can do everything "right" and still have high and low blood sugar levels. Even a blood sugar that is wildly out of range may not be anyone's fault and may have no known cause. And these "random" blood sugar levels are routine—not extraordinary—occurrences.

9. Type 1 and Type 2 diabetes are completely different diseases. They share a name and high blood sugar as the primary symptom. They are challenging in different, though occasionally similar, ways. But the genes, cause, often treatment, and definitely cure are vastly different.

10. Exercise takes a lot of effort for people with Type 1 diabetes. Going for a run or a swim may take literally hours of preparation and follow-up monitoring and food and insulin adjustments to manage blood sugar levels. Exercise is good, but it's not as simple as it may appear.

11. People with Type 1 can eat anything, but it may take an incredible amount of work. Like exercise, it may take hours of monitoring and dosing insulin after certain foods. Sometime people may feel like putting in this effort to eat a treat, and sometimes they may not feel like doing it.

12. People with Type 1 diabetes require nutritional information for foods. It is required in the same way that people with food allergies require ingredients before they can eat. Without it, people with Type 1 are making a wild guess about how much insulin they need to take.

13. The insulin pump is just another (more precise) way of delivering insulin. It does not automatically regulate blood sugar levels or insulin. It requires constant programming and monitoring, and only delivers what the user manually programs to be delivered.

14. Type 1 diabetes is often as much an emotional struggle as a physical one. Imagine taking a lifelong course you didn't want to sign up for, working hard at it every day, and only getting a C on the exam. Then repeating it all again next semester, forever. That's what Type 1 often feels like.

Monday, October 8, 2012

21 Years: Memories

I remember my diagnosis, vaguely. Wisps of memories, like a dream, that have merged and shifted so much over time I'm no longer sure what's real and what's just made up from bits and pieces my parents have told me.

Before diagnosis, I remember only the thirst. Truly unquenchable, it was all I could think about. It crept into my thoughts at home, at school, in sleep. I read problems in my math textbook about selling jugs and milk and all I could think of was how much I wanted a glass of milk. At friend's houses, a denial of liquid from their parents felt like a denial of air, ensuring I'd spend the remainder of the afternoon wishing my mom would come so I could go home and get water. At night I awoke multiple times to make my way to the bathroom, moving as quietly as possible through the darkened house, scared I'd wake my parents. I'd use the toilet and, after washing my hands, would keep the water running and stand on my tiptoes, craning my neck until I could catch the stream of water in my mouth. I'd drink and drink until my stomach felt like it couldn't hold any more, and then creep back to bed for another few hours.

For an adult, the thirst prior to diagnosis is inconvenient. For a child, who doesn't have independent access to water, it feels almost like torture. Of course, from my parents' perspective I was drinking plenty. Too much, in fact. Sitting down to dinner and drinking four glasses of water! But from my perspective, it was never enough.

Diagnosis came unexpectedly. One morning I was in school, and by that afternoon I was in the hospital. It wasn't a crisis, though. My mother took me to the doctor because she had noticed how much I was drinking, and that I had lost weight and seemed tired. I remember the doctor mentioning diabetes. It was the first time in my life I'd ever heard the word. I asked my mom what would happen if that's what I had, and she answered that it just meant I wouldn't be able to eat much sugar from then on. Neither of us had any idea what was in store.

I don't remember the trip to the lab to draw blood, or the trip home to pack. I do remember my mom filling a giant black-and-white water bottle of water and giving it to me, telling me I could drink as much as I wanted. It felt like a huge relief, that someone finally knew how constantly thirsty I was. I don't remember going to emergency or much of what happened there, except that they kept me there for hours. I remember riding upstairs in a wheelchair covered with a blanket. I remember begging for food because they wouldn't let me eat for hours.

I remember eating breakfast when it arrived the next morning, only to be reproached by the nurse. "From now on, you can never eat until you've had a shot." I don't remember my first insulin injection. I do remember oranges and syringes, vaguely. I remember my mother testing her blood sugar and thinking it was low when the meter counted down 3-2-1 before showing the result (except in those days the countdown started at 45, not 5). I remember having to check ketones and blood sugar every time I used the toilet. I remember nurses waking me up in the middle of the night to check vital signs. I remember classmates coming to visit and get-well cards and balloons, and books. I spent a majority of my four-day hospital stay reading and drawing.

In a way, I wish I could remember more of my diagnosis. I don't have any idea what my blood sugar level was. I don't even know the exact date for sure, except that I do have my first logbook. It starts on October 11, which I peg as the day I got out of the hospital (it starts at dinner), and since I know I was in the hospital for four days, I figure October 8 is my diagnosis date.

It's been 21 years now. I've lived over two-thirds of my life with this disease. That many years is a long time ... a lot of blood tests, a lot of shots, a lot of highs and lows. A lot has changed over those two decades. Meters are smaller and faster and require less blood. Carbohydrate counting is the norm. Most people use insulin analogues that didn't exist back then. Pumps are much, much more common. Continuous glucose monitors are beginning to take off.

Some things haven't changed. Diabetes is still hard. It still demands attention all day, every day, all year. There is still no such thing as a vacation. There are still highs and lows. There is still the threat of complications lurking in the future. There is still the fear of going low and not waking up one morning.

How can anyone do this forever? I used to ask myself that. I used to think of all the years I'd have to manage diabetes—more than 50 years still ahead, if I live into my 80s—and wonder how anyone could possibly continue this non-stop, forever.

But then I look back at the past 21 years, the beginning of which I can barely remember, and realize how long a period that is. That is a long time. And somehow, I've made it. And not only made it, but gotten through unscathed, free of any known complications. Twenty-one years ago I could never have imagined myself here, today, having managed diabetes for so long. It would have been too overwhelming, even if I had been old enough to care.

If there is one thing I have learned over the years, and especially this past year, it's that the only way to manage this disease and not go insane is to take it one test at a time. Not even one day at a time, but one test. You can only focus on one decision at a time, otherwise it gets too overwhelming.

I am hopeful that over the next 20 years they might find a cure ... but I'm not holding my breath. I think the closest we'll get to a cure in my lifetime is a technological one—something like the artificial pancreas. If they do find a cure, great. But I've prepared myself for the likelihood that they won't.

In the meantime I continue to do the best I can each day, one test and one decision at a time.

Sunday, August 19, 2012

How Do You ... Read?

This is the second installment in my series of posts called "How do you ...?" designed to answer some questions I frequently get about living as someone with a visual impairment. The first post in this series covered how people with visual impairments use computers. Future posts will include how I get around, how I manage diabetes, and how I accomplish everyday things around the house like cooking and cleaning. If you have any ideas or questions that I can cover in future posts, please comment!

Numerous studies have documented that blindness is the most-feared disability, and for a lot of people this relates largely to a fear of helplessness and dependency. For many, reading is a vital part of their lives, whether for work, school, leisure, or everyday activities such as reading mail. The good news is that, like computer access, today people who are blind or visually impaired have greater access to print than ever before in the past. This is largely a result of the huge advances in technology that have occurred over the past 30 or so years.

Fifty years ago, if someone was unable to read standard-sized print and wanted to read, they were limited in their options. The material might be available in an alternate format such as large print, braille, or audio recording. Each of these formats required a labourous transcription of the material by hand or a reading of the entire text onto a special record, each of which took many hours. If the book wasn't available in one of these formats, then a "reader" could read the material aloud to the person with a visual impairment

Fortunately, these days are long gone, although this may be the types of limitations many people who are sighted imagine when they think about blindness and literacy. Today there are still traditional libraries for the blind that provide books in braille and audio formats (the CNIB Library in Canada and the National Library Service for the Blind and Physically Handicapped in the United States, among others). These libraries provide an invaluable service to those with vision loss, but it's impossible for them to keep up with the publication of print materials. Only about 3-5% of print materials are available in one of the alternate formats of braille, audio recording, or electronic text, which means that the selection in these libraries is extremely limited compared to what you would find if you walked into even a moderate-sized public library.

Many people with low vision are able to access print books directly simply by enlarging the print. Some can see well enough to read large print books which are present in many libraries and bookstores, although the print in these books is still often too small for those with low vision to read. Handheld magnifiers can be useful, too, but they only allow a few letters or words to be viewed at a time, are fatiguing to use for long periods, and for many they do not provide enough enlargement. Magnifiers are great for spot reading price tags in stores or menus in restaurants, but for longer reading they are not as good. Devices called video magnifiers (formerly known as closed circuit televisions (CCTVs), before that term came to mean security systems) use a combination of a camera, a light source, and a monitor to enlarge and enhance print material to a greater degree than handheld magnifiers can. Not only can print be magnified, but colour, brightness, and contrast can be adjusted to suit different eye conditions. Video magnifiers come in desktop and portable models, and are probably the most widely-used technology for reading and writing by those with visual impairments. These devices can also be connected to computers in order to share a single monitor and save desk space if desired.

A desktop video magnifier
A portable video magnifier.

These days, however, many people rely not on hardcopy versions of these formats, but rather on electronic formats which can be used with various devices that render output in whatever format is needed. A digital file can be loaded on one device that provides large print, and that same file can also be loaded onto devices that provide speech and/or braille output. This not only means less work, since only one conversion from print to digital format is needed, but it also overcomes a lot of the limitations of hardcopy formats. Large print takes up more room than standard print, and therefore one textbook may equal two or three volumes in large print. Braille is even worse—one print textbook may take up two dozen volumes in braille! With analogue audio recordings, fast-forwarding and rewinding to find the appropriate starting point often takes up more time than listening to the reading once the right place is finally found. A digital format is also great for people who like to use more than one format, perhaps large print in the morning and switching to audio later in the day when their eyes get tired.

There are a variety of ways in which these digital formats are created. Formats such as RTF (Rich Text Format) and HTML are sometimes used. Most libraries for the blind now create books in DAISY (Digital Accessible Information SYstem) format. This format can contain text (which can be rendered in large print or braille on various devices), audio, or both text and audio with markup so that the media are synchronized during reading. Users can set bookmarks and insert notes, jump to headings and page numbers, and generally use the format in the same flexible, non-linear way print books can be used. DAISY can be distributed on CD, memory cards, or online download, and also created by end-users (see information below). Many of the tools mentioned in the previous post in this series (about computers) can be used to read DAISY files. These files can be accessed with screen reading and screen magnification software, through refreshable braille displays and notetakers, and also through dedicated hardware players and via mobile apps for devices such as the iPhone and iPad.

As mentioned earlier, libraries for the blind are only able to create a limited amount of material compared to the vast amount of print books being published. In addition to libraries for the blind, most schools (K-12 and post-secondary) will create books for students who need alternate formats. But what about those who are not in school and want to read something that is not available from a library for the blind?

Many people with visual impairments are able to create their own books by using flatbed or camera-based scanning systems and specialized OCR (Optical Character Recognition) software. This process seems tedious when explained to people who are sighted: a book must be scanned page by page (or, in many cases two pages at a time), and once scanned can be converted to large print, braille, or audio either on the computer itself or transferred in formats such as DAISY to some of the portable devices mentioned above. With a fast scanning system, it might take an hour to scan a 250-page book; this seems like an incredible amount of work to people who can pick up a printed book and read it. But when this means the difference between being limited to 3-5% of available print material versus being able to go to a bookstore or library and read almost any book available, those who use such technologies find them invaluable. A service called Bookshare, available in the United States, takes advantage of users scanning books by enabling them to legally share the material with other print-disabled users through an exemption in the copyright law.

So, you may be wondering, why put in all this extra work of having libraries produce DAISY books and having users scan their own material when Amazon and other companies have over a million e-books available? This could be an entire post of its own, but the short answer is that commercial e-books are, for the most part, not accessible to those of us with visual impairments. So far the iPad is the only accessible e-book reading device (due to its built-in VoiceOver screen reader), and on the iPad, iBooks, Google Play, and Blio are the only accessible e-books. Hopefully over the next few years we will get to a point where all e-books are accessible.

For people with visual impairments, reading and technology are closely tied together. This post has given a broad overview of the ways in which a majority of people are able to read. The formats (large print, braille, audio) have stayed the same over the years, but the influence of technology has had a huge impact on access. In the future, things may be even better. Being able to convert a book from print to braille in a few hours is definitely better than waiting a few months for it to be brailled by hand, but it would be even better if publishers would make their material available directly, so that everyone could have access to material at the same time, regardless of whether they happened to read it in print, large print, braille, or with audio/speech output.

I hope this post has been useful and informative. As usual, feel free to comment, as I appreciate feedback and am always happy to answer questions.

Tuesday, June 19, 2012

The Glasses Debate

I am debating whether or not to get glasses.

For most people, this would sound silly. Either glasses will help or they won't, right? Either glasses are affordable or they aren't ... right? For me, and anyone else with very low vision, it's a more complicated decision than that.

I don't have any kind of refractive error such as farsightedness or nearsightedness. This is actually unusual, as most people with my eye condition have refractive errors. Nonetheless, in grade three I was prescribed +12.5 diopter reading glasses to provide magnification only. I still remember how excited I was while I waited for the glasses to be made. I would stop many an adult who would listen and explain how I was going to get reading glasses that would "make it so I can read like this"—as I held a book away from my face at a semi-normal reading distance—"instead of like this," and I'd squash my nose up against the page and squint, to demonstrate how I currently had to read.

Ah, if only that were the case!

The glasses did allow me to read for longer periods of time and made letters look crisp instead of fuzzy; but I wasn't able to read significantly smaller print with them than I was without. And even when reading large print, I still had to hold material so close it touched my nose to see it. A year or two after I got the glasses, an eye doctor asked me to read newsprint while wearing them. Even holding the paper up against my nose I couldn't read three words without it being obvious that I was just guessing. He turned to my parents and said, "These don't help her at all." I felt defensive about him criticizing my glasses. They did help me! They made reading easier—and besides, I definitely needed them to be able to draw well!

I used the glasses daily throughout elementary and high school. Even with them, I still needed large print books and handouts, but they carried me through many a late night of homework or an afternoon spent drawing. In addition to the glasses, I used a slantboard to bring material closer to my face (so that I didn't develop posture issues hunching over as I worked), and also a task light which I used to put so close to the page—and my face—as I worked that it would sometimes "fry" stray strands of my hair. I used to develop an ink smudge on the tip of my nose from it rubbing against the reading material, and red spots on the sides of my nose from the weight of the glasses, but I didn't care.

Then, in college, three things happened. First, the reading load increased exponentially. In high school we had been expected to read a couple dozen pages a week from our textbooks—and, in truth, I skimmed a lot. (I still graduated with honours.) In college, however, we were suddenly expected to read a hundred or more pages a week. And that wasn't even including the "extra" material we had to read when a term paper was assigned! I found myself spending hours each night reading large print, and I was jealous of people who were able to read on the bus on their commute to and from campus, which I wasn't able to do.

Second, my CCTV (closed-circuit television, now more commonly referred to as a video magnifier) that I'd been using for the past ten years suddenly bit the dust in the middle of the semester. Since there were few large print materials available in college, I had begun to rely on this device for almost all my reading. And when it died, I suddenly found myself completely unable to do any homework at home. For the few weeks it took to replace the unit I spent hours on campus using the old, dilapidated CCTV in the college library.

It was at this point that I decided that my complete reliance on technology and my complete inability to read and write effectively without it was ridiculous. Suddenly, the braille I had been taught in early elementary school—but had never actually used for schoolwork—became useful. I relearned the code on my own (which was made much easier by the fact that I'd already learned it once as a kid), and began using both hardcopy braille and a Braille Lite on loan from the government. Suddenly, with the portability of the braille notetaker and the ability to put dozens of books and other documents on the device, most of my reading and writing was done in braille. Later, I exchanged the Braille Lite for a more modern BrailleNote, which was then upgraded to a BrailleNote Apex—which I still use at present in my work as a graduate student. With braille, I was suddenly able to do things I've never done before, such as read in bed, read and write on the bus, reference notes during class discussions, or study at a regular study carrel in the college library rather than having to sit in the corner of the computer lab where all the equipment for students with disabilities sat.

And the third thing that happened was that I lost my reading glasses. I didn't mean to; and in fact at the time I was still utilizing them for some things such as when using the computer and while drawing. But at some point they disappeared, and despite searching at home and school I was unable to locate them. (I always wonder where lost items like that go, and whether some random student found Coke-bottle glasses sitting at a study carrel in the library ...)

Parallel to my sudden rediscovery of braille as a useful skill, technology for those who used large print took leaps and bounds in advancement. In recent years I have acquired a flatscreen desktop video magnifier, a portable video magnifier, the ZoomText software on my computer has greatly enhanced magnification abilities compared to versions ten years ago, and I have an iPad which has magnification and other accessibility features built-in. Years after I began using braille, technology in the realm of large print had caught up to a degree that I am able to comfortably use it even for somewhat lengthy reading tasks—although I still use a combination of braille and large print on a daily basis. At some point during the past ten years I did replace my reading glasses. But, with my new technological tools that enable me to increase the font size to whatever degree was comfortable, that allowed me to sit back at a more ergonomically-friendly distance, and that allowed me to access virtually any material in braille, my glasses became relegated to the role of nice-to-have rather than essential.

And so, since I don't use my current prescription all that often, I probably won't get it refilled. I have also noticed problems with the frames on my current glasses: they interfere with the angle at which I prefer to look at print (which is down-right) when reading. So, if that were fixed, I might use them more. But mostly I am thinking that I might want to go one or two other routes: I either want stronger lenses that will enable me to read smaller print, or I want weaker lenses that will enable me to focus at my "new" technologically-enabled reading distance of 10-12 centimetres. I am not sure the second is even possible, but I've made an appointment with the optometrist I see who specializes in low vision so that I can ask.

There are issues against glasses, though, one being cost ($600+), and the other being the fact that I don't really use them. Still, it would be nice to have glasses I that could use comfortably while on the computer ... or, alternatively, glasses that might enable me to read the display on my Animas Ping insulin pump without having to guess (never a good thing when calculating bolus doses!). In the end, though, I'm currently getting along fine without glasses, and having new ones might disrupt my current working system of technology and print, speech, and braille reading.

This issue of when and where to use vision and when and where to use other techniques (such as braille, speech output, a white cane) is an issue those of us with low vision are constantly struggling with. Vision is said to be the dominant sense among humans, and from my visual-learner-perspective, I'd have to say that's true for me. If I had my way, I'd use my vision for everything and just enlarge things to a point that I could see them and take as long as I needed to read. But if I'd gone that route, I wouldn't have gotten through two undergraduate degrees taking full courseloads, I wouldn't have gotten through student teaching at all, and I probably wouldn't be in graduate school working on a 100-page research thesis. It's taken me years to become truly proficient in braille and to become comfortable reading academic material with speech output. Add to this mix of factors the fact that different individuals and groups have different opinions about what is "right"—some believing those with low vision should use use their vision to its maximum potential even at the cost of eyestrain or lowered achievement while others believing that those with low vision are essentially blind and should minimize use of residual vision—and the situation becomes even more complicated, throwing a "peer pressure" factor into the decision-making process.

I, personally, have come to a point where I am comfortable using a combination of methods. Large print when it works best, speech when it works best, and braille when it works best. I am proficient in all three areas of access, and most people do not necessarily have this advantage. Yet, even for me, whenever a new low vision gizmo comes out on the market I have a little stint of wondering whether that might be the solution to being able to read print for extended periods of time. Often, I will find somewhere to borrow the device from and will try using large print alone for a while; but inevitably, I always find myself coming back to braille and speech output. This issue of wishing to use print is a thousand times worse for people who are new to low vision. I usually come around to speech and braille again fairly quickly, even if they aren't my preferred medium if I were to have unlimited time (which, obviously, I don't; the world doesn't work that way!). But for many people who are losing vision, this quest for the perfect low vision device that can fix their vision dominates their life for months or even years.

And so, I find myself wondering if I really need new glasses. Are they worth getting, being more of a might-be-nice convenience rather than a necessity? At the price, maybe it would just be a waste of money. Maybe I'd use new glasses as seldom as I use my current ones, even with better frames and a better prescription. But, on the other hand, maybe it would make some small aspect of life such as computer use or using my insulin pump or reading all the other little electronic LCD devices that pervade our everyday lives easier. (Just today I struggled to use a point-of-sales device with a touchscreen I could not read at all, and had to try three times before, with assistance, I was able to hit the right areas of the screen in the correct sequence.) It's too bad I can't just try out a sample of the potential new glasses for month or two to see if they're useful; but with such a strong prescription it's often an ordeal just finding a shop that can actually make them. For the time being, the debate rages on in my mind. Hopefully the appointment with the low vision specialist will yield some direction.

Saturday, June 16, 2012

3.5 Hours

The term insulin dependent isn't used all that much anymore. When I was first diagnosed with diabetes, my new Medic Alert bracelet said insulin dependent diabetes mellitus. Now, it says Type 1 diabetes. Many people don't think about the fact that they are dependent on various hormones their body produce on a continuous basis for survival. I am vaguely reminded of it every time I change my pump site, feeling a few drops of the life-sustaining hormone that my body is unable to produce itself fall onto my hand as I fill my pump tubing. Usually, this system of motors, tubing, and computer chips that I rely on works flawlessly and I barely think of the fact that, were it taken away, I would quickly find myself in trouble. But, a few times each year something goes wrong and interrupts the flow of insulin into my body, and I get a stark reminder of what insulin dependent means.

I change my infusion set every two days, and usually fill my pump cartridge only partially so that I can change that at the same time. Today was a site-change day. So, around 11:30 I ripped out my old infusion set, disinfected a patch of skin on my left arm, put down some Tegaderm, and poised my hand with the new infusion set above the correct spot before holding my breath, adjusting the angle, and sliding it in. I withdrew and disposed of the introducer needle, filled a new pump cartridge, primed the tubing with insulin, snapped the tubing to the infusion set, and finally filled the tiny cannula now nestled under my skin with insulin.

Then I tested—a perfect 4.7—and bolused for my standard Saturday lunch of 25 grams of carbohydrates. I ate lunch as I worked on my master's thesis.

An hour later I felt a bit off, and my first instinct when I feel off is always to check my blood sugar. I found it at 11.1, which I bolused a small correction for. I thought it was a bit odd that I had risen so much in just an hour, but then again I'd also just eaten, and 11.1 is not an alarmingly high reading for me, so I didn't dwell on it.

Soon I needed a break from my thesis and ventured out into the rainy weather to go to the mall for a bit. I stopped at Starbucks briefly and got my standard drink, bolusing for 10 grams of carbohydrates but not testing because it had only been about an hour since I'd tested last, and I wasn't feeling particularly high or low.

An hour and a half later when I got home, however, I definitely felt high, which is never a good sign. I tested, and knew what the result would be even before the 21.9 flashed onto the screen.

My mind immediately ran back through the past few hours. I hadn't missed a bolus. I hadn't eaten anything ridiculous. I wasn't stressed or sick. The only thing I could think of was that I had changed infusion sets three and a half hours earlier.

I checked for ketones, as is standard when dealing with "unexpected" highs. The strip darkened to the second-to-last colour, meaning I was producing a large amount of ketones. Clearly, something was not right with the insulin delivery system. Either the insulin wasn't being delivered, wasn't being absorbed, or wasn't potent.

And so, I pulled out the newly-inserted infusion set and stuck myself with another needle in a completely different location. The infusion set I'd just removed had a small kink at the very tip of the cannula. A kink like that is all it takes to completely cut off the flow of insulin. Snapping the tubing onto the new infusion set, I programmed a big correction bolus. And then the process of waiting and monitoring to make sure my blood sugar comes down started.

Three and a half hours ... Those few hours without insulin is all it took for my blood sugar to soar from perfect to four times the normal level. That's all the time it took for my body to begin the process of breaking down fat as fuel and producing ketones as a byproduct—a process that happens when the body can't access glucose due to lack of insulin; the start of the process that, if not interrupted, leads to diabetic ketoacidosis then death.

An hour and a half after giving myself a correction with the new infusion set—insulin now being delivered properly—my blood sugar is down to 13.2. Still high, but definitely heading in the right direction. I think about the amount of insulin I take each day, which adds up to about half a cubic centimeter of liquid. Such a small amount, and yet I am dependent on it each day not only to keep good control of my blood sugars, but just to stay alive. Even a few hours without it and things fly out of control. It makes me feel a sense of awe at how such a small thing can be so important, and grateful that I have easy access to insulin every day.

Sunday, June 3, 2012

How Do You ... Use a Computer?

I get many questions online about how I do various everyday things as someone who is legally blind, so I've decided to start a series of posts called "How do you ...?" This first one will cover how I use a computer, and future ones will cover topics such as how I read, get around, and manage diabetes. Feel free to post in the comments section with any topics you would like me to cover in this series and I can add them in.

Many people wonder how someone with little or no vision can use a computer. Often, people may assume that a friend or family member must read the screen aloud and type for the person who is blind or visually impaired. Fortunately, this isn't the case! Touch typing requires no modifications; in fact, people who are visually impaired often type much faster than those who are sighted simply because they must learn to touch type, and can't cheat by looking at the keys. They also tend to use computers far more often. For people who are sighted, computers are a convenience, tools that makes things faster and easier. For people who are blind or visually impaired, computers are a necessity, a tool that makes things that were formally impossible possible. Without computers, I personally would find it much harder to correspond with friends, read the daily news, conduct research, read books and articles of interest, and do tasks such as banking and filing. Not to mention the things everyone else does, like participating in social media!

All the major operating systems out there (Windows, Mac, Linux) are accessible to people with little or no vision through various types of assistive technology. Portable devices including tablets and cell phones are also accessible to varying degrees depending in large part on the brand. Those of us with visual impairments use the same operating systems and programs as everyone else, but we rely on various types of access software and, in some cases, on hardware like braille displays to use the computer.

I myself use a combination of the technologies listed below. This isn't usually the case; most people use only one or two of them. What I, and others, use at any given time depends on what the task is.

Close up of the corner of a computer monitor displaying large, high contrast printMost people with visual impairments, such as myself, have enough residual vision to read large print. In that case, they can use screen magnification software to access a computer. This software enlarges all text and graphics on the screen, and provides visual enhancements of things like the mouse cursor and caret (the little blinking bar that shows where you are typing). Since the entire screen is enlarged, not everything can fit on the physical monitor at once, so the user needs to move the view around by moving the mouse pointer or using keyboard commands. The software automatically jumps to the area of the screen with focus (the area where the mouse cursor or text caret is, or where something else changes). It can take some getting used to, but for the most part the software is easy to learn, and for many people this software makes the difference between being able to read the screen and not being able to. Examples of popular screen magnification software include ZoomText and MAGic. Almost all screen magnification software is also available with some reading features that provide speech output, so that users can have long documents and windows read aloud using synthetic speech, if needed.

For people who have to use high levels of magnification (like me), which can make navigating the screen with magnification software alone difficult, as well as for those who have little to no vision and who can't see enough to read even magnified text, there is screen reading software. A screen reader takes the contents of the screen and translates it into synthetic speech. Since a screen reader user likely won't be able to see a mouse cursor on the screen, navigation is achieved entirely through keyboard commands. That's right—screen reader users do everything sighted users do but never touch the mouse. Sometimes, this means that a screen reader user can open Microsoft Word or compose and send an e-mail even faster than a sighted, mouse-dependent person. Learning to use screen reading software has a bit of a learning curve because the method of access is entirely different from what most people are used to (keyboard input and speech output, compared to mouse input and visual output), but once a user is proficient they are able to access virtually anything. Examples of popular screen readers include JAWS for Windows, Window-Eyes, and System Access. There is also a very good open-source screen reader called NVDA (NonVisual Desktop Access), and VoiceOver is an integrated screen reader that comes included on every Mac.

Close up of the pins on a braille displayAs well as magnification and screen reading software, which are the two most popular methods of computer access, some people also use refreshable braille displays. These displays use tiny pins that raise and lower to form a line of braille characters (ranging from 12 to 80 cell models). Braille displays require a screen reader in order to run, and due to their expense (ranging from $1,500 to over $10,000!) and the low braille literacy rate, they are not as popular as using speech or large print. For those who use them, however, they are invaluable because they provide direct access to what is on the screen—including spelling, formatting, punctuation, and other things that are difficult to access with speech. Tasks such as proofreading or skimming text, as well as computer programming, are much more easily done with braille than with speech. Braille also provides a way for someone who is totally blind to operate a computer without needing headphones (such as in a library or lecture hall).

In addition to the usual desktop and laptop computers, tablets and mobile phones are also accessible. Screen magnification and screen reading software (including braille display support) is available for Symbian, Windows Mobile, Android, Blackberry, and iOS devices. In fact, many companies (most notably Apple, though other companies are slowly beginning to follow suit) are beginning to include this software in every product so that a phone or tablet can be used by someone with a visual impairment without having to spend hundreds of dollars on extra software. The next area that is beginning to open up in terms of accessibility is entertainment, including talking TVs and digital cable boxes.

The one area of computer access that lags far behind are all the little LCD screens we find everywhere in our daily lives, from point of sale machines to microwaves to printers and office phones. Hopefully, these miniature computer systems will become accessible in the near future. (This complete lack of accessibility extends to virtually all diabetes supplies, especially the higher-tech devices like pumps and CGMs. But that's a topic for another post ...)

I hope this post has been helpful (and hopefully interesting, too!). Feel free to post any comments or questions you have, I'd be glad to discuss them!

Friday, May 11, 2012

The Age of Science Fiction

Often, as I sit on the train watching the city flash by on my daily commute, I think about how we are beginning to live in an age of science fiction.

I've always loved science fiction. I grew up watching Star Wars and Babylon 5 and reading books like Ender's Game and the Foundation series. These books sparked my imagination and made me excited about what the future might bring. And while space opera was my favourite sub-genre, it's not the only topic covered by science fiction. I clearly remember reading stories as a teenager that involved e-readers, social media, and smartphones long before these devices became reality. In fact, if you look at some of the science fiction stories and films from 50 or even 30 years ago, in some ways their imagined worlds looks at lot like ours does today ...

Take snippets of my daily life as an example. Every morning when I wake up a machine automatically turns on and makes me a cup of coffee. I log onto a global network of computers and check electronic mail and social media sites as I eat breakfast (yeah, I'm guilty of eating at the computer). I ride a bus that uses GPS technology to display and announce them in a slightly robotic, female voice. I board a fully automated train (no driver) that whisks me underneath the city for a few stops before rising onto elevated tracks, where it weaves between buildings and over streets packed with morning commuters. As I stare out the window and listen to music, checking for new text or e-mail messages periodically, most people around me do the same. Portable music players, mobile phones, and e-readers are now more prevalent on buses and trains than paperbacks and newspapers.

Diabetes management has also seen a huge shift in the past 20 to 30 years. Just 30 years ago there were no blood glucose meters and insulin pumps were still experimental. Only 20 years ago there were no insulin analogues, no "smart" features like bolus calculators on insulin pumps, no five-second countdown times or tagging readings on meters, and logbooks were still exclusively paper. When I was diagnosed in 1991 there was no mention of an insulin pump being in my future. It wasn't until I was in high school in the latter half of the 1990s and a kid a few grades below me had a pump that I realized it might be something I could use in the future.

Now for some snippets of my diabetes life ... Before I get to work I grab a coffee. I prick my finger and squeeze until a tiny bead of blood appears. I touch my finger to a strip that, sensing the liquid, sucks my blood into a tiny computer that then estimates the amount of glucose molecules in the drop. I use my iPhone to look up the carbohydrate count of the coffee, then use my meter again to program in an insulin dose, which it beams wirelessly to my insulin pump, which delivers insulin with its tiny, precise mechanics. I log the entire thing in my electronic logbook on my iPhone, which I can later sync to my computer. My calendar, which holds all doctors appointments, and to-do lists which hold errends like picking up prescriptions, are also synced across all my devices.

I watched a TED talk a few months ago about how the past few decades have been the information age, and how the next few decades will be the age of bionics and technology's impact on health and medicine. Today there are already devices like cochlear implants, bionic limbs, and artificial hearts. Retinal chips, mind-controlled wheelchairs, and more advanced artificial organs like kidneys seem to be on the horizon. And, as much as some people dislike the artificial pancreas, I suspect it will be the next big breakthrough in diabetes management (note I don't say cure). All of this is hugely exciting, if for no other reason than it's amazing that it's even possible to emulate something like a retina or a pancreas with technology.

It boggles my mind that much of what I take for granted today was considered the realm of science fiction when I was born. Who knows what will come next, or how it might benefit those of us with diabetes.

Sunday, May 6, 2012

Putting In the Time

Type 1 diabetes takes up a LOT of time.

Testing your blood sugar may only take a few seconds, but weighing and measuring food, looking up nutritional information, programming boluses, adjusting basal rates and other pump settings for activities, changing infusion sets and refilling pump cartridges, and logging all of this (whether on paper or digitally) all adds up. And that doesn't even include the time taken to review diabetes logs, refill and pick up prescriptions, treat extreme highs and lows, and going to doctor's appointments.

And this isn't even including all the waiting and watching the clock. Wait 15 minutes to re-test after a low. Bolus 20 minutes before eating. Test after two hours after a meal or correcting a high. Adjust basal rates an hour before exercise. Change sites every two days. Refill prescriptions every few weeks. Get blood drawn every three months. It's a wonder we have time for anything else!

In the past, I've sometimes found it a struggle to maintain a balance between diabetes an the rest of life. I've heard Type 1 diabetes compared to another job sometimes, and I don't think that comparison is too far off. (In Canada, you can even receive the Disability Tax Credit if you use insulin and can document that you spend 14 hours a week on diabetes-related tasks.) I've frequently found that either I get busy and my diabetes gets out of control, or else I put so much effort into diabetes that the rest of my life gets out of control.

It's a difficult balance to maintain sometimes. My diabetes control seems to get nudged out of whack every time there's the slightest change in schedule, food, stress, or any other variable. For the past few months I've been putting a lot of effort into consistently doing things like eating healthy and logging, trying to integrate it into my life so that it's just routine rather than an extra effort.

So I was pleased when I looked back at my logbook for the past week and found that I had actually managed to keep a decent handle on diabetes—and keep decent records of it all. Oh, I had highs and lows. I had an encounter with high blood sugar accompanied by large ketones, even. But overall my blood sugars weren't bad, for me; especially when you throw in the fact that I've been transitioning from one job to another and my schedule has been crazy.

I sometimes get frustrated and disappointed that, for whatever reason, I struggle so much with achieving tight control. I look at all these people running around online with their A1c in the 5% and low 6% range and wonder why I can't seem to do that, even after more than 20 years' experience.

More recently, I've realized that I put in a lot of time and effort into diabetes. In fact, I put in more time and effort into my diabetes than most other Type 1s I have met in person. And I've realized that there is only so much I can do. If I am putting in the time and effort to eat healthy (and limiting carbohydrates), accurately count carbohydrates (weigh/measure food or use labels), test eight or ten times a day, bolus for everything (including frequent corrections), exercise daily, record everything, and go to the doctor regularly ... what more can I do? Not much, at least not without making my life revolve around diabetes. That's a lot of work. And if that amount of work only gets me to an A1c of 7.6% (which was my result last week), then is that so bad? Sure, maybe it won't guarantee that I never get complications, but at least if I do get complications I can't say it's due to lack of effort.

Maybe if I keep up the efforts long enough it will pay off in a lower A1c at some point. But, even if it doesn't, I need to stop and give kudos to myself for the effort rather than beating myself up over a number. It's like grades: a person gains more pride out of taking a really hard course, working their butt off and putting in hours of studying and passing with a C+ than they do taking an easy course, hardly studying and skipping half the readings, and pulling off an A. As much as A1c counts, maybe this is one instance where putting in the time and effort should count just as much as the result.

Saturday, April 28, 2012

Food Rules

"Anything to eat today?" the Starbucks barista asks as she takes my travel mug and relays my order for a sugar-free vanilla Caffè Misto [10g of carbohydrates] to her co-workers.

"No, thanks, just the coffee," I say, handing over my debit card. As I punch in my PIN, the barista leaves and returns a second later with a bag.

"Do you like blueberry scones?" she asks.

"Uh, sure," I say, still peering at the debit machine and not really paying attention.

 "Here,"—a bag appears in my hand—"a blueberry scone for the road. Free, since you're a regular." Not entirely sure what to do, I smile and thank her, retrieve my debit card, and shove my wallet and the scone into my purse.

As I wait for my coffee I decide without hesitation that I will see if anyone at work wants the blueberry scone [61g of carbohydrates]. In the end, the workday swept me away and I completely forgot about it until I found the scone in my purse this afternoon, squashed and dried out, buried under my wallet and digital camera. (I feel guilty throwing it out; but I don't think anyone would want it now ...)

A year ago, I probably would have made a different decision. I might have chosen to eat half of the scone now and half of the scone later, to divide up the carbohydrate load. Or I might have decided to try eating the entire thing and hope it would be one of the times my blood sugar cooperated. As it was, the fact that I didn't even consider the possibility of eating it is a massive improvement over how I thought just a year ago.

I think one of the hardest aspects of diabetes is that there are no hard and fast rules around food. Every time something is offered it triggers this internal debate about whether to eat it or not. There's no simple, all-encompassing ingredient or circumstance that, if present, leads to an automatic, "No, thanks."

Compared to the other dietary issue I live with—a food allergy—diabetes is like a guessing game. There are no foods completely off-limits with no exceptions. For anyone who has anything but the most mild food allergy, challenging your restriction can, at best, ruin a meal and lead to hours of misery and, at worst, lead to an encounter with the EpiPen and trip to the hospital. With diabetes, if you challenge your restriction it might lead to a few hours of high blood sugar ... but then, sometimes—if you happen to bolus just right—it may not. And, while hyperglycemia may be unpleasant, it's not nearly as unpleasant (or scary) as anaphylaxis. It's easy to ignore the fact that those hours of high blood sugars are doing cellular damage, especially if (like me) you have never seen or experienced diabetes complications firsthand.

Over the past year I've thought a lot about how automatic my refusal of anything that contains, or may contain, my allergen is. Mention even the possibility of it containing or coming into contact with my allergen and it's an automatic refusal, no exceptions. I don't feel any craving or any sense of, "Well, maybe if I just tried it this once ..." (It probably helps that I've been allergic to this food since infancy, so I never developed a liking for it to begin with.)

I like how easily and automatically I'm able to refuse food with regards to my allergy. I don't find it as easy with diabetes, and I wish I did. There's always that thought running through my head that, "Well, just this once won't hurt ... even if I do go high, a few hours of high blood sugar isn't going to kill me!" I imagine anyone with a food intolerance or a doctor-recommended dietary restriction that doesn't hold the possibility of life-threatening consequences experiences this same type of dilemma.

With diabetes, there is always the possibility that I could happen to craft that perfect bolus that keeps my blood sugar from soaring too high or sinking too low. And there's also the frustrating fact that, even if I ate perfectly, my blood sugar would still go high and low because of the many factors besides food that influence it. When I was younger, there were guidelines in the form of an exchange diet and "no sweets" rule; but anyone who grew up with that system knows how well it worked (or didn't work) at controlling blood sugars—mostly because it's carbohydrates, not sugar, that matters (and it's nearly impossible to eat a diet that eliminates all carbohydrates)

So, given that I can't eliminate my problem food (carbohydrates) entirely, I've been trying to come up with some guidelines that are straightforward enough so that I don't have to think when people offer me food. I can just take it or leave it as easily as I can with my allergy. Some of what I've come up with, that seems to work well for me, are that I will not accept a food if:
  • I don't have access to nutritional information
  • The carbohydrate count is over 20-30g
  • The item is almost pure sugar (sugared drinks, candies, etc.)
  • My blood sugar is already high
So far, these guidelines have been working well for me. I am able to assess a food at a glance most of the time and decide whether it's worth it. Sometimes, particularly when I'm eating dinner out, it is worth it and I will indulge in the pasta and take my chances with an evening of high blood sugar. But, more and more, I'm getting better at deciding quickly and easily what foods to eat and what foods not to. It doesn't always work, but overall my diet (and my blood sugar) are a lot healthier because of it.

Friday, March 30, 2012

The Dilemma of Data

Logging data is one of those things that every single person diagnosed with Type 1 diabetes probably does initially, but that falls by the wayside after the first few years (or months!). It's one of those things that we all know helps, yet most of us struggle to do. We are told on one hand that diabetes doesn't have to be something that rules our lives; yet, it's hard to frame something as just a daily nuisance when it involves not only so much daily minutiae but also involves recording every single instance of minutiae into a paper logbook or computer system.

I personally find logging data manually to be incredibly useful. Sure, my pump records a lot of information, but there are things it doesn't record (like specifically what I ate) that I might want to know. Plus, the act of manually recording blood sugars and other events makes me much more aware of what is going on than when I don't record. For me, as someone with a visual impairment, the advent of computer software has also greatly increased the accessibility of keeping a logbook. Despite this, I still struggle with exactly why I'm taking the time to record all this information.

A paper logbook and iPhone diabetes management app Like other aspects of diabetes over the past few decades, logging has changed a lot. Those of us diagnosed before computers were common used ruled notebooks or binders full of loose leaf paper. There was often no data analysis component—we logged so that we could show it to our doctors, because meters back then did not have memory. In the late '90s meters began to come out with computer connectivity, and it seems to be at this point the whole idea of "data analysis" developed. These days some people still use pen and paper, but people also have the choice of using a myriad of computer applications, websites, apps, and computerized meters and pumps to collect, store, and analyze relevant data.

For me, I don't actually care that much about blood sugar statistics. Sure, it's great for tracking progress, but it doesn't actually help me improve my control in any way. Plus, almost all meters and pumps these days are able to provide some basic information about averages and glucose ranges, either through the meter itself or through accompanying software. So, when software is expecting me to enter data manually—which, as I said above, I don't actually mind—I really wish that it would provide me with actual tools I could use to improve my control. The current software out there seems little better than a paper logbook in providing these types of tools.

What I really want to see are causes and effects. I don't care about the fact that my average blood glucose is 8.2 mmol/L or that I've been waking up low every morning for the past few days or that I've tended to go high around dinnertime lately. I'm aware enough that I have a sense of this information without the nuisance of logging everything—and the very process of manually logging makes me even more aware of these trends. What I am interested in seeing is the cause and effects of variables on blood sugar, so that I could either control these variables or adjust my insulin to get tighter control.

With the huge craze on being able to quickly collect, skim, and analyze various types of data out there, diabetes software seems to be lagging way behind. Designers seem stuck on this blood-sugar-statistics model and on the before-and-after-meal framework for organizing data. What I would really like to see is diabetes software that views blood sugar as a dependent variable, and allows tracking of some standard independent variables (food, insulin, exercise) as well as the creation of any other independent variable event one wishes to track. Plus the ability to create parameters for these variables (time, intensity, or anything else) and filter results based on these parameters. Plus the ability to then filter blood sugar in various time relationships to one or more of these variables (before, after, during, between). Plus the ability to tag readings or events with any relevant notes and then search through and organize the tags at a later date. And then provides tools for visualizing and analyzing blood sugar in relation to all these other variables that have been collected. Want to see whether blood sugar always rises on the third day of an infusion set? Want to see how much exercise of X intensity lowers blood sugar compared to exercise of Y intensity? Want to see whether exam stress really affects your blood sugar levels? Want to see if you really run higher during the winter compared to the summer? Want to see if you go low every time you do X even though it's something you only do once a month? Want to see if an hour of swimming lowers your blood sugar differently than an hour of cycling? It's little things like this that would make manually recording information truly valuable.

As of yet, there is no software that even comes close to what I am describing. I am currently using a combination of a desktop application and an iPhone app that are okay, but far from perfect. And I think this, more than anything, is why I really struggle to log sometimes—because I feel like the data I log is never really taken advantage of and used in a truly meaningful way that will let me figure out some of the factors that make managing Type 1 diabetes so maddeningly "random" sometimes. Isn't diabetes really about problem-solving in the end? I want software that will actually help me sort out data and make decisions about how to solve problems, not just tell me statistics about my blood sugar.

Wednesday, March 28, 2012

Different, Deficient, Disabled

As I was crossing the street today, a boy walking with his father beside me suddenly cried in excitement, "Look! Look, she's using a ... she's blind!" He was young, maybe five, and his father (or, at least I assume it was his father) responded with, "Mm-hmm," and went on to shush him and drop back behind me.

I tried not to smile. I like when young children see me doing everyday things like carrying grocery bags across the street. Many adults seem to think this is an amazing, miraculous feat rather than an everyday occurrence. Maybe, by seeing a person who is blind doing such everyday things at a young age, children will grow up believing I (and anyone else) are just as capable as they are. I began wondering at how negative attitudes towards people and their capabilities are formed throughout life, and thought back to my own experiences.

I was born different.

Some of my first memories are from when I was four or five years old. There's not much—snatches here and there, scenes of the house we lived in at the time. But nowhere in those memories is anything about feeling different. Nowhere is there any time where I was told "you can't" or where I felt inferior.

As a five-year-old I used to play Legos with my brothers in the playroom. We'd sit on the floor, Tupperware containers full of the colourful blocks scattered throughout the room, building our various structures. I used to plunge my hand into a container of blocks and burrow through the pieces, feeling for the right shape. When I found one, I'd grab it and bring my hand up close to my eyes. If it was the right colour, I'd use it. If it wasn't, I'd toss it back into the container and begin the burrowing search again.

It wasn't until later that I realized no one else did this. My brothers and our friends sometimes had to move pieces around with their hands to expose those underneath, but they searched with their eyes. Sometimes, they were faster. But sometimes I was faster. And, in the end, we build equally as well and how we went about finding the pieces we needed—with our hands or with our eyes—didn't matter.

It was around the time I started school that I became deficient.

Suddenly, I entered an environment that was almost exclusively visual and that I had little control over. I couldn't see what was written on the board even from the front row. I couldn't read any of the print materials unless they were enlarged and I squinted and got so close my nose brushed the page. When we crowded onto the carpet each morning for calendar and weather activities I couldn't see anything the teacher was doing.

Suddenly, I needed all sorts of special aids to help me access the visual part of the world. I had a paraprofessional in the room to read from the board, enlarge handouts to a size I could see, and describe what was going on when the teacher did presentations. My desk was cluttered with a slant board, magnifiers, a task lamp, and large print books. Later an entire table in the corner of the room was commandeered to house a computer, printer, and video magnifier (this being the early '90s when such things weren't common in classrooms). A teacher of the visually impaired came in several times a week to teach me how to use magnifiers and monoculars, assistive technologies, and braille.

Still, with these aids I was just as capable as any of my classmates. I never heard the words "you can't" spoken by any child or adult around me. Sure, I needed to do some things in a different way, but I could still do them in the end. My classmates, I believe, always saw me as just "one of the gang" and not really any different from them, except I couldn't see well. They went through great lengths to include me in activities, such as calling out my name in physical education when a ball was sailing in my direction, and yelling "Good try!" when I invariably missed (or flinched out of the way of the flying object I couldn't see).

I did not realize until many years later how hard my parents fought for me during my school years. When I wanted to participate in baseball in grade three they made it happen—even though it wasn't the same league that all my friends had joined (that league refused) and I ended up hating it in the end (they also did not let me quit ... I had to finish the season). But at least I got to try it. I participated in gymnastics and downhill skiing, swimming and piano, skating and art, track and field and acting. The worst injury I received was getting knocked unconscious (and breaking my nose!) when I ran headlong into a classmate at full speed as we were playing Freeze Tag. That, and many more minor injuries, were totally worth it for the experience of having an un-sheltered childhood. What other legally blind child played baseball? What other legally blind child started racing across the playground with their peers as soon as they exited the school doors (granted, I knew the school grounds well!).

It was when I started college that I became disabled.

Suddenly, to my surprise, the aura of blindness followed me everywhere. I wasn't just dealing with needing accommodations for my visual impairment—I had to face the attitudes of other people, too. I wasn't surround by people who had known me for years, people who considered my visual impairment to be just one aspect among many of who I was as a person. Suddenly, it was all new people—many of whom saw first and foremost the "blind student." Some of whom did not have a positive attitude about the capabilities of someone with a visual impairment, either. I had more than one professor over the years suggest that I drop their course for various reasons (usually before they met me and learned that my blindness wasn't such a big deal after all). Yet, I had other professors who, despite very challenging courses, embraced the challenge of making their curriculum accessible and were open to working with me to find a way through, even if it wasn't easy.

How do people develop a positive attitude in one instance but a negative attitude in another? How important are early experiences? Seeing someone with a visual impairment crossing a street with a white cane versus seeing them being guided by someone. Seeing someone portrayed in a movie as capable rather than helpless. Hearing people talk about lawyers and doctors and teachers who just happen to have disabilities rather than about how people with disabilities need help and charity because they aren't as capable.

For me, the experiences and attitudes I was exposed to growing up made a huge difference in my own attitude today. My disability was never ignored—but it was never used as an excuse or a reason for why I couldn't do something. I could do anything—I just might have to do some things a little differently. And that was okay!

How can we—all of us, whether we have a disability or not—help to foster positive attitudes of disability ... deficiency ... difference at an early age in life? So that children will grow up to be parents, teachers, and employers who truly believe that all people, regardless of their ability or disability, are capable ... they just might have to do some things a little differently.

Saturday, March 24, 2012

Full Disclosure ... Or Not?

I was 17 and it was one of the first real jobs I'd applied for. Walking up to the customer service counter at Walmart, I'd asked for an application form, which I then took home so I could use my desktop video magnifier to fill it out.

A few days later, I was excited to get a phone call inviting me to an interview. (I was sure getting an interview must mean I'd practically gotten the job.) When I arrived at the store, however, I was surprised to find a dozen other applicants milling about nervously. We were all escorted into a room and handed a stack of papers. It wasn't until I noticed that everyone else was frantically scrounging through their purses and bags for pens and finding hard surfaces to lay the pages against that I realized these were forms we had to fill out. Lots of forms.

I had kept my white cane folded and stashed in my purse. I was 17, this was my first job interview, and I wasn't about to instantly brand myself as different the moment I arrived by walking in with a white cane. And, staring at the multiple sheets of paper with faint blue print, I still didn't want to brand myself as different. Who would hire someone who's first act was to say they couldn't do something?

So, I searched my purse until I found a pen and a handheld magnifier, pressed my face to the page, and painstakingly filled out the forms. I was unable to read and write simultaneously, so my strategy was to squint through the magnifier to read, then take the magnifier away to write, then peer through the magnifier to check my writing, then move on to the next question, and so forth ... It was painfully slow. I tried to ignore the fact that everyone else was getting up and handing in their papers while I was barely done the first page.

I felt a huge sense of relief when I finally got up and handed in the forms. Even though I was, by far, the last one.

When it came time for the actual interview, I decided that the possibility of being asked to fill out more paperwork or do something else I couldn't see well was worse than the possibility of being branded as different. I took out the white cane and unfolded it halfway. At least they could tell what it was, hopefully ... but it hopefully wouldn't be the first thing that jumped out about me, either.

I thought the interview went well. I was nervous, being a teenager and all. At the end of the interview the interviewer told me that I would probably be hired as a greeter. I was ecstatic as I left the store.

I never heard back from them.

I tried waiting. I tried calling. I tried getting the employment counsellor I was working with to call on my behalf. We never heard back. Nothing.

To this day, I'll never know what happened. Was I just too timid in the interview? Or was it discrimination—their belief that, because I was visually impaired, I wouldn't be able to do the job? Or, did my reluctance to take out the white cane—and reluctance to ask for help filling out the forms—paint me in a negative light? Perhaps it painted me as someone who was not only self-conscious but also reluctant to communicate a situation and explain what I needed.

I had a job interview yesterday. Nowadays, I handle things very differently. I walk in with my white cane unfolded and in full view from the start. I will admit: I am still self-conscious doing this. I can't help but wonder what's going through the interviewer's mind when they see me, knowing that very few people have direct experience working with individuals who are blind. Oftentimes I'll learn what's on their mind as the interview progresses, because they'll ask me. "This job involves travel, how will you handle that?" "How can you use a computer?" "How will you supervise kids?" "There's lots of reading ... will that be a problem?"

I know that some people with disabilities would refuse to answer such questions. In the U.S. it is illegal to even ask them (I'm not sure about Canada). And, sometimes, I do get asked simple and awkward questions which make it clear that the interviewer thinks I'm unable to do the most basic tasks of daily living independently. But my philosophy is that if I don't answer these questions, how are they ever going to learn? Clearly they have never interacted with someone who is blind. What good would it do to clam up and refuse to answer a question, rather than answering it with ease and inviting them to ask any others they might have?

The flip side of this is that before interviews I go through lengths to hide my insulin pump and make sure all its alarms are turned off. I make sure my blood sugar is high enough that I have no chance of going low. My visual impairment is an obvious disability. Even if I didn't use a white cane, I would want the interviewer to know why I was unable to make eye contact. It's something that has a huge impact on how I'll perform the job—not because I can't perform it but because I may have to do so differently. But my diabetes isn't obvious. No one has to know I have it unless I tell them, and as of yet I have never had to ask for any kind of job accommodations for this disease. The one thing I don't try to hide is my Medic Alert bracelet; but, if anyone has ever noticed this, they have never asked about it.

The decision of when and how to disclose a disability or a condition like diabetes is complex. I've known people who disclose it right on the cover letter. I know others who call up and tell a potential employer when they get invited for an interview. I know others who don't say anything until they get hired—and this is actually me, in regards to diabetes. Would I do the same if I had a relatively minor visual impairment? Would I feel comfortable disclosing my diabetes if I was applying for a job where my disease might require accommodations?

It's hard to say, and it's definitely a topic of ongoing debate among health- and disability-related communities. I do believe that it can reflect positively on someone if they are able to comfortably talk about their disability and the types of accommodations they require—but it depends a lot on an individual's own comfort level. It also depends on the job; there are some jobs where it may actually be advantageous to state a disability or illness near the beginning of the application process. In the end, I'm not sure there is any "right" answer to when and how to disclose a disability or health condition to a potential employer.

Tuesday, March 20, 2012

Braille: Powerful, Flexible, Elegant—and Misunderstood

Note: This post is about braille and one aspect of the braille literacy issue (some would say "crisis") which currently exists.


I sit on the bus during my commute home reading a novel on my BrailleNote to pass the time. As I read, my fingers skimming lightly over the raised pins of the refreshable braille display, a child sitting nearby turns to her mother and asks what I am doing. “She's blind," the mother answers, "so she has to read in braille."

I pause in my reading and briefly ponder the nuances of language which have just taken place. I realize that whenever people speak of braille, it is usually preceded with "has to use" or "has to learn." I wonder why this subtly-negative "has to" often precedes the mention of braille. I think of the role braille plays in my own life, of how it has made my hobbies, my studies, and my employment so much easier and, indeed, possible. I think of how braille was not something I had to learn and use but something I chose to learn and use; and, as someone with low vision, it's a choice I am thankful to have made. I am thankful to be proficient in a skill that, regrettably, the majority of blind and visually impaired people do not possess. Braille is a powerful tool, an incredibly flexible means of communication, and an elegant form of reading for those who choose to become proficient—but it is also very misunderstood, not only by the sighted public but by many blind and visually impaired individuals themselves.

The usefulness of braille is undeniable. While the unemployment rate of people who are blind in Canada hovers near a shocking 70%, the unemployment rate among those who are proficient braille readers hovers closer to 10%—only slightly higher than the overall national unemployment rate of 6%. There are many tasks, important for work, play, and daily living, which cannot be easily accomplished by looking closely at large print or by using speech output. Pressing an elevator button. Referencing notes during a meeting or discussion. Reading financial records. Keeping an organized filing system. Using a microwave independently. Delivering a public speech. Jotting down a quick phone number or memo. Using a ruler or other measuring device. Reading and following a map. Understanding a flowchart or diagram. Distinguishing a credit card from a library card from a bus pass. Tasks such as these are taken for granted by people who are sighted, and any employer would expect an employee to be able to perform them. But for many people who are blind who do not read braille proficiently, operating a microwave or discreetly jotting down information during a meeting or phone conversation is no simple task. Why is the braille literacy rate among people who are blind at less than 10%, while the print literacy rate among the general Canadian population is at more than 99%? Why are more blind and visually impaired people not learning and using this powerful, flexible, elegant system of communication?

There are several misconceptions about braille which are held by people who are blind in addition to people who are sighted. Many believe that braille is very difficult to learn, that it has become obsolete in the face of advancements in computer technology, and that braille use is slow and awkward at best. Nothing could be farther from the truth. Many people see braille as a last resort—something that a person "has" to use when all else fails. Why is braille never spoken of as simply something someone uses or knows, without the "has to" part?

First off, braille is not a foreign language. The mere fact that Microsoft Word insists on "correcting" my grammar by capitalizing the word "braille" whenever I type it shows just how deep this myth runs. While English and French and Japanese should be capitalized, braille should not—just as the word print or audio should not—unless it is referring to Louis Braille, the inventor of the code. Braille is just that: a code. When someone reads braille they are reading the exact same English (or French, or Italian) as a print reader, they are just doing so using patterns of raised dots rather than lines drawn on a page as the coding system.

Another myth, largely related to this idea that braille is a foreign language, is that braille is hard to learn. While becoming fluent in braille takes much dedication and practice (just as reading print does—ask any primary school student!), the basics are not hard to learn. The alphabet can be learned in just a few minutes and proficiency built in just a few days of practice, and punctuation and numbers in just a little more time. This basic level of braille can (and should!) be put to immediate use labelling items and keeping personal records. Braille contractions, which must be learned if the user wishes to become truly fluent in the code (as this is the format almost all books are published in), will take several weeks to months to fully master. And braille does take practice—you cannot learn it and then not use it and expect to retain the skill.

Unfortunately, many people—particularly those who lose vision as adults—learn uncontracted or contracted braille initially through rehabilitation training and then fail to make use of it on a daily basis. Just as with any new skill, braille must be practiced in order to be retained and build proficiency. Imagine learning to play the piano and then never practicing! Although you may retain some memory of the positions of notes, the chances that you could perform in front of an audience are slim at best. Imagine learning to add and subtract and then never using it outside of the classroom! Braille, like any new skill, requires practice. It may be slow and tedious at first, but as with other skills this will slowly give way to speed.

One of the bigger myths is that braille is becoming obsolete and unnecessary due to advances in technology. In fact the opposite is true—technology has made braille more available and portable than ever before, which makes the drop in literacy rate from more than 50% in the 1950s to less than 10% today a bit ironic. I have seen countless articles over the past few years about technology replacing braille and making it obsolete. Where are all the articles saying how technology has vastly expanded braille accessibility? In the past braille books had to be transcribed by hand, dot for dot with a slate and stylus or cell-by-cell with a braillewriter. These days, however, a braille document can be produced in a matter of minutes through the use of a scanner, computer software, and braille embosser. Many products such as the BrailleNote and Braille Sense contain refreshable braille displays in extremely portable and versatile packages. Refreshable braille displays can also be connected to standard computers, tablets, and cell phones (not all, but many). Far from making braille obsolete, technology has enhanced the usability and availability of braille far beyond what could have been imagined when Louis Braille invented his code. It is now possible to store hundreds of books on a flash drive to access anywhere—on the bus, at work or school, or at home—rather than needing an entire room to store a dozen large volumes that make up a single book and being limited to carrying around one or two volumes at a time. (This is one area where people who read braille were way ahead of everyone else. Braille readers have been using electronic books for the past 10-15 years; the rest of the world is just starting to catch up!)

Also, while a lot of people who are sighted marvel at the ability of someone with a visual impairment to feel braille dots, many people also believe that braille is inherently a slower reading medium than print. This misconception may be "confirmed" when, after a few weeks or months, a beginning braille reader continues to read haltingly and with awkward pauses. To dispel this myth you need do nothing more than listen to a proficient braille reader to realize that braille can be read fluently, eloquently, and with expression. Some parents and teachers of students with visual impairments fall into this trap, and as a result set low expectations of their braille readers' speed and inadvertently create a self-fulfilling prophecy. If a child is only expected to read 50 words per minute, then that’s all they’ll read. If they're expected to eventually reach 200 words per minute or more, then that’s what they’ll reach. Every new braille reader (child or adult) should have the opportunity to listen to a proficient reader read aloud so that they can know what is possible.

Finally, one of the most harmful and widespread misconceptions is that braille is only useful if a person cannot read print at all. This is so far from the truth. A large number of adults with low vision say they wished they had learned braille as a child. There are those with low vision who learn braille and are amazed at how much they were limited by large print alone. And yet, there are countless people with low vision who do not learn braille because they do not think they need it. If someone has low vision then braille should definitely be considered an option—and not a last resort! I, as a low vision person myself, would not be able to have gotten as far as I have—through two undergraduate degrees, student teaching practicums, most of a master's degree, and become a successful professional—without braille. I could not make oral presentations, or read from notes during meetings or lesson plans during teaching, or read and write while commuting to maximize time, or quickly use a system for filing papers, or even find an elevator button gracefully, without braille. And just because someone with low vision uses braille does not mean they must do so at the expense of print. I, and many others, happily utilize both mediums on a daily basis depending on the task at hand.

And so, there are (what I think) are the main misconceptions about braille; misconceptions that are held not only by people who are sighted but also by people who are blind. Misconceptions which—among other causes—hold people back from learning braille and, more importantly, from becoming proficient and graceful in reading and writing it. A lot of people just don't realize the possibilities in braille, and the flexibility of it, and the fact that it is fast and is efficient rather than clumsy and slow—but they have to practice and believe it's possible to get there! This post is, of course, not addressing all of the obstacles to people learning and using braille, but I think if braille could be reframed so that it was viewed as a valid choice people make rather than a last resort, perceptions toward braille, and the number of people learning and using it, would change for the better.