Freeing Refreshable Braille for More Access

Many in this era worry that the advent of digital audio technology will mean the end of braille as we know it. And there is already some truth to this, as very few totally blind people know or read braille as it is. But and I’ve seen this frequently in my training, those who depend heavily on audio to consume written content often are less able to spell correctly, which may well affect their ability to gain employment. Given the degree to which the cards are already stacked against us when it comes to getting jobs even without this challenge, we need to gain every advantage we can in any area.
These days, the answer to being more able to read materials in braille without having to produce the paper and take up the space this medium requires is to use a refreshable braille display. I’ve had a few of these devices, from the Braille Lite I got way back in the late 90s during my college career to the Brailliant BI 40 received from the I Can Connect program for deafblind individuals. And in 2020, I of course got the Mantis Q40 display I’ve written about a few times in this journal. And each of those devices opened up more of the written word in ways I could not have imagined.
The problem with these displays is and has been their expense. Most of us blind folks can hardly afford $2, 3, or $4,000 to get even a low-end display. Happily though, at least in the U.S, the National Library Service for the Blind (NLS) is making refreshable braille available for any eligible blind individuals. You have to be enrolled in the library for services, as I am, and call your regional library to request one.
There are two models of NLS Ereaders, as they are known: one provided through Humanware and another through Zoomax. I think you get the brand of reader that your library has available, so I received the Zoomax machine.
These models contain 20 braille cells, which is as much space as I had on my Braille Lite but only half the 40 cells on my other units. Reading with 20 cells is certainly doable, but it requires a lot more pressing of the panning buttons to advance through a single braille line. I’ve found though that as I practice I’m already getting better at it. My Mantis is currently on the fritz and I don’t know when or if I’ll ever see it again, so having this option so quickly available is vital to me being able to continue my work. I also like that it has a handy carrying case with magnetic snaps that keep it closed, which is kinda cool!
This reader is primarily designed to download and read NLS BARD books. However, it can connect via Bluetooth to your smartphone, and USB to the PC. It’s got an SD Card reader, and USB C port for the PC and a USB A port for a flash drive. I love that such a small unit contains so many ports.
It’s a pretty good device on the whole. The only issue I really notice, and this may be only in my unit, is that the battery gauge is unreliable. It says I have 50% charge, then 77%, then 19%, then 54%, so I can’t really tell how much juice it actually has. This is not a big deal though, as I’m usually close enough to a charging port at all times. I even have a portable battery I can plug in.
I am happy such a program exists. If you would like to take advantage of it, again just call your regional library and ask if they have an NLS Ereader. There was a slow roll-out, but they were at least hoping that all states would have units by the end of 2023. And happy reading!

“The Sign for Home” Examines Life and Challenges for a DeafBlind Individual

Recent high-profile cases have shone a spotlight on issues regarding disability and independence. To what degree should one make decisions about one’s life, even if not fully able to perceive the world in what is deemed a “normal” way. Should family be able to basically dictate how a person is to live, simply because they believe they are protecting the individual from harm, thus possibly denying access to choices that other adults expect to have?
In his debut novel The Sign for Home, Blair Fell addresses this issue in a novel way. First, we have Arlo, a DeafBlind individual who resides with his devout Jehovah’s Witness uncle and receives information via a Tactile American Sign Language (TSL) interpreter who professes to believe the same. Arlo, wishing to explore possibilities in writing, enrolls in a class at a Poughkeepsie (NY) community college where he meets Cyril, another interpreter who accidentally or on purpose opens Arlo to a whole new world.
This writing class, taught by an unusual professor from St. Kitts, leads Arlo to explore parts of his past that he had been forced to shut away because his uncle deemed them sinful. These included an encounter with a deaf girl while he attended the School for the Deaf that led to his being sent to live with said uncle in the first place.
As the story unfolds, we learn that things with this girl are not as they seem. Arlo had been told one story about “the event” that ultimately ended their blossoming love affair, but… well as it turns out everyone has their secrets and lies. As the truth is revealed and Cyril and his associated cast of characters make Arlo more aware of possibilities regarding independence, he begins to push back against his uncle and Molly, the initial interpreter. This eventually leads to his seeking total freedom from his uncle’s guardianship.
Arlo and Cyril are primarily featured, with Arlo’s perspective being second person present and Cyril’s first person past. Both of these methods allow the reader to connect deeply with what is going on, offering a different set of feelings based on each. The former seems designed to ensure that one feels the experience of DeafBlindness and coping with a world neither heard nor seen insomuch as one can truly experience this, while the latter aims to allow access to the complicated emotions involved in helping Arlo deal with change.
At points during this novel, I as a DeafBlind person worried that the portrayal of Arlo made life for those living with these disabilities seem too simplistic and/or sad. Arlo knew little about how to operate in society when it came to moving around by himself and being willing to explore the wider world. The first part of this of course is that for some individuals who are DeafBlind, just as for those with other challenges, this is a true outcome. If one is not exposed to people and services such as Orientation and Mobility and Vocational Rehabilitation that are designed to help a person with a disability learn what is needed to thrive, one might indeed have a hard time. Even so, I appreciated that Fell included people who were functionally independent and who knew enough to teach Arlo, Cyril, and all in their circle some basic strategies to make his life easier. It is realistic, after all, to show that one might struggle with life as a DeafBlind person, but I believe it is equally if not more important to show that life can still be lived well with this or whatever condition one finds oneself.

Wordle’s The Word: On Internet Trends and Accessibility

In a recent NPR story on what they called Garbage Trends, they noted that these sorts of trends arise on the Internet all the time and are often gone within a week or so. They are, I suppose by their nature, very visual and lack features that would make the accessible to blind and low vision people, as well as to folks with other disabilities that might require modification for full interaction.
But I think one of the cool things that is happening is that so many within our own community are learning how to create software or code that can render something usable far more quickly than an app’s developers, who are often hesitant to “look into the matter,” are willing to do. Such is the case with this new Internet word game called Wordle.
I remember the first time I saw someone’s Wordle post on Twitter and all I hear was something like “White square? White Square? Green Square” etc. I wondered hat on earth was that, becoming curious because I do enjoy playing word games, despite rarely being any good at them. I slowly saw more and more of these posts dotting my timeline, even among big-time folks, and yes I guess they’ve already hit that point of saturation that generates a lot of annoyance from those who no longer care to see such silliness. I can understand that, but I also wanted the ability to participate in the fun a little bit, especially driven by, as noted in that NPR story, the constant drudgery of the pandemic and related bad news.
So when I saw a Blind Bargains article detailing how one might set up the computer or phone with accessible code that someone created that would allow one to play Wordle, I bit. As one can see from clicking the above link and then the accessible Wordle page from within, getting things going with anything other than Google Chrome, which allows for simply adding an extension, is complicated. So I opted for the easy route and had mine up and running in a matter of moments.
The Wordle site generates one new word a day, and you have six attempts at guessing its five letters. It then tells you if you have correct letters, letters that are in the word but in the wrong place, or absent letters. I think I took five out of six guesses to get the first word and four out of six to get the second.
I just look at it as good, clean fun that allows me to feel like I’m “in it” with everyone else for the short time that this trend will likely last. And the implications of such nimble accessibility solutions being possible are not to be overstated either, namely in the potential for quicker adaptation to needed software for one’s job. So I’m delighted to see that we are able to come up with such powerful community-based solutions, and wish I were versed enough in their background, coding, scripting, and the like, to do some of that myself. Even so, I will just appreciate the efforts of others and hope that it inspires the initial creators to start taking wide-ranging access needs into consideration at a product’s creation, rather than it having to be built in later.

IOS Game Review: Swordy Quest

When selecting games to play on my iPhone, I usually have a hard time either because they are too challenging or they rely heavily on sound for direction and orientation. Naturally, the latter is going to be the case in those that are designed at least to some degree with blind people in mind, but they tend not to work as well for those, like myself, with significant hearing loss. If I have to put on a pair of headphones to fully perceive what is happening for instance, well I may as well not bother.

On the other hand, games that are say Tex-based are usually too abstract for me to follow and/or don’t have as many cool sound effects. The effects are what really make things come alive for me. Or if they do get all of this stuff right, they lack some key accessibility components that make it difficult for all but the most expert blind player to execute.

So imagine my surprise when I downloaded a fun game called Swordy Quest from the iOS App Store after hearing of it on the Blind Abilities podcast. (I guess it is only available on iOS, but do not know for sure). Before starting it, I figured it would be too involved for me to figure out what was going on and that I would quickly lose interest. But I’ve found that it very well walks the fine line between being too challenging and so simplistic that accomplishing anything offers little pleasure. The addition of a “spirit guide,” who tells you which moves you might want to consider next helps with that.

As best I can tell, you’re on this island in a world called Fonetazia (like Fantasia? Haha). You fight all sorts of strange animals and travel about the island gathering resources that you can use to build stuff and trade. The story behind what you’re doing slowly unfolds as you unearth clues by solving fun puzzles that involve matching pairs of items. The sound effects are rich, especially as you fight and defeat the animals. And I’ve found that turning the in-game music volume down to 10% allows me to hear VoiceOver speaking and yet leave said music on to enhance the game’s mood.

And on the subject of hearing, and accessibility in general, I do not know if this title was built specifically for individuals who are blind but the accessibility is top notch. You are even told how to best use VoiceOver’s features to navigate among items within the game, and there are buttons that allow you to quickly revert to the top of the list after skimming your inventory items, for instance. I would even say that, while it might be kind of clunky to do so, one who is deafblind and fully relies on a Braille display could play this game. All of the prompts appear in text, and you would only need to touch the screen to hold down the button for gathering stuff. You can feel the phone’s haptic engine causing it to vibrate in your hand, and if the alert duration was set high enough, say at 3 seconds, you could read in Braille which items and how many you’ve collected. I have encountered very few games of this complexity that also reach such a high level of access for everyone. For this reason, I am certainly inclined to support it financially to the extent that I can.

I started playing on Friday night, and well we probably shouldn’t talk about how much time I’ve already put into it. But it’s a great way to kill rainy summer days, and it makes me feel more motivated when I do sit down to do the work that needs doing. This is the best iOS game I’ve seen since the makers of Dice World began working with us some eight years ago to improve accessibility of that platform. If you like that sense of adventure, I would say you’ll love Swordy Quest.

App Review: EXPRESS Yourself

I was trolling around in the app store a few weeks ago, in response to one of the Emails that Apple sends out, and found an amazing product that does something no other app has, at least that I’m aware of: it makes the face visible to me! What do I mean? Read on.

First, it never ceases to surprise me the extent to which this one piece of metal? plastic? whatever your iOS device is made of, has brought to my life as a blind person. And yes I know, Android is nearly there, and maybe surpassing iOS in some aspects, but I’ve not yet played with a device running this system so I can’t say what I would think of it.

Anyway, with my trusty phone stowed safely in pocket and Braile display on my lap, I can use programs to read, write, listen to music, and even navigate successfully on the bus. And thanks to some enterprising individuals and organizations, there are even apps that allow me to do more complex things, such as take my own photos, (no guarantees as to their correctness but I can be pretty sure I’m at least shooting the right thing), and read my own mail. All great, life-changing stuff.

But what about that most elemental of human interactions: the ability to communicate. More specifically, that communication which occurs nonverbaly, which studies have repeatedly shown to be far more believed than mere words. While some of this is passed along through other body language cues, much of it happens through that most natural of transmissions: facial expressions. Blind folks prove its innateness in fact, as we too are able to call up a smile, frown, etc when it reflects our inner emotion, or even if we want to kind of fake some inner emotion. These expressions tend to be more believable though, since they are harder to “make up” than spoken language.

Enter Express, a powerful engine that can, through quick analysis of pictures shot via a discretely placed camera, provide unprecedented information regarding one’s possible thoughts, as displayed on that facial window to the soul.

How It Works

The Express app can run in the background and even with a locked screen, so long as it is launched and the camera activated prior to use. If you think you’re entering a situation where you might wanna know what is being unsaid, simply open the app and tap the “Start” button. You are then presented with two options: Constant, or Summary Analysis.

If you pick Constant, the app takes a shot of the face you’re “focusing” on in adjustable intervals, and alerts you through a series of vibrations as to what the likely expression is. The list of vibrations and their meanings can be found in the “Demos” menu. It is important to practice these repeatedly, so that you know what you’re getting when it comes across. It wouldn’t do, after all, to think that she’s smiling at you when you’ve actually made her quite angry!

(DISCLAIMER: The app developers assert that the rendered interpretations are reasonably accurate, but cannot guarantee 100% certainty. In field testing however, very few errors were reported. Use with some caution, and act on this info at your own risk.)

If you choose “Summary” the app will still take pictures of the person’s face, but instead of vibrating regularly it will generate a report of overall mood: how often did they fluctuate, were there sudden changes, and the like. This might be a good idea if you don’t want the person to wonder why you keep vibrating.

“Goodness! Are you just crazy popular or something?”

Equipment/Accessories

You can, in theory anyway, use the phone itself to snap these pictures. However, the developers suggest that this might introduce unnecessary error into the results. How will you know, for example, if she still finds that joke you’ve told for the fourth time amusing, or is just wondering why you’re sitting there holding your device aloft for no apparent reason?

So, for an additional $45.99, the user can get a specialized camera made of a strong, thin material that matches the color of the wearer’s skin so as to significantly decrease visibility. It is fitted with a revolutionary adhesive that bonds to the skin, probably the forehead, at the molecular level, making it water-resistant. No worries though, as it can be taken off by simply scrubbing with a finger in a circular motion, as it responds to a bacterium that all humans carry.

The camera charges using kinetic energy, that which is generated from movement. So if the battery begins to run low and you for whatever reason are unable to engage your entire body, just nod your head a few times. It is recommended that care is used in so doing, though, as this too may alter the interaction and lead to inaccuracies.

“Yeah, yeah, yeah, yeah.”

“Are you actually agreeing with me, or just really sleepy.”

My Final Thoughts

I’ve used this app for about 12 days now, and it has unquestionably changed my life. As I sit here on this warm day at the beginning of April and write this, one of my friends is playing with it, sitting across the table from me and informing me that it reports that I have a big, silly grin on my face. I love it! Now for something to come along that can clean my apartment. MMM.

So, have any of you gotten this thing yet? If so, what do you think of it. If you wanna find it, do a search in the app store for Express, o yes! for iOS (Don’t ask me who decided to call it that, and let me know how it goes.

REVIEW: All The Light We Cannot See, by Anthony Doerr

Because I am reading this book for a fun Facebook club, and just due to it being an interesting story, I thought I would write a short review about the popular book All The Light We Cannot See, by Anthony Doerr. It’s yet another among the pantheon of World War Two era thrillers, a collection of which I’ve read many. I guess this period has always interested me, given that in many respects it was one of the most frightening in human history.

In this particular novel, Doerr chooses to tell the story of the unfolding conflict from two main perspectives: that of an intelligent German who goes on to become a radio operator and locate people who are making “illegal” transmissions, and a blind French girl who lives with her father and eventually her great uncle.

The German, Werner Pfenig, spends his early life in an orphanage with his sister and other kids, barely able to get enough food and about as por as can be. He discovers his love for radios somewhat by accident, rigging an old set that he then uses to entertain all within the house at the permission of Frau Elena, the head of the house. This ability to fix and tinker with some of the most complex systems as well as to master trigonometry, science, and similar fields, soon leads Werner out of the orphanage and to a rigorous training academy that prepares young men to fight for the reich. That these sorts of academies existed is amazing.

Meanwhile, the blind girl who’s name is Marie-Laure, discovers that she has an uncanny ability to solve puzzles. Her father, who works at the National Museum in Paris at the story’s start, enjoys creating these puzzles for her and concealing prizes within that she usually obtains with eye-popping speed. He soon teaches her tricks to figure out navigating her environment, such as counting steps and other landmarks. Finally, he constructs a model of the city that she can traverse with her fingers to learn where everything is in relation to everything else.

Shortly after the novel’s opening, the French family are forced to flee Paris to a seaside fortress city called Saint-Malo, where the great uncle lives in a six-floor house and has remained inside for many years due to mental challenges, probably definable these days as PTSD, suffered during the first World War. Marie-Laure is thus called upon to re-acclimate to these new surroundings, which she also does with the help of another model constructed by her father. Once she gets good at moving around, she begins to shuttle messages from the bakery to their house for broadcasting on the radio hidden in the attic that has not been confiscated by the invading Germans.

Werner spends a few years honing his skills within the academy, and when he is supposedly only 16 years of age they decide to bump his age up two years so that he can go ahead and begin serving his country. He has many misgiving about this service as he gets farther into it, leading to increased depression about life in general.

The story is told in a unique way, I would say in parallel rather than serial fassion. We jump back and forth between the early days and those leading up to, and those on and following August 9, 1944, the middle period which Werner calls the “Border days”. This creates in the reader a sense of detachment from the latter experiences as they are initially revealed, but slowly dawning understanding of their significance and origins as the previous period concludes. I am not sure how to feel about this arrangement, other than that perhaps it causes me to miss some of the stuff that occurs later and dilutes the response I would have to it. I suppose this is the intent.

Alongside the larger plot of the war itself is a smaller plot where a soon-to-be cancer-ridden German Sergeant Major vigorously hunts down the fabled Sea of Flames, a highly valued diamond that is said to confer ever-lasting life on its holder but also to cause serious problems for those who are close to the holder.

On the French side, I would say that Marie-Laure is generally shown as a competent, well-functioning blind person. As usual though when sighted people write about such things, way too much emphasis is placed on the idea of counting steps to get around. I do this only in very rare cases, and would say that it would mostly be an impractical way of measuring distance anyway. Can you imagine at every turn resetting your “meter” to zero, sometimes having to them go up to 100 or more in order to find the next turn? I might take steps of different sizes, or someone may call me causing me to become distracted. No, most of us do not do this regularly. We just learn to notice changes in the environment; sidewalk, grass, etcl and remember where to make the turns. It’s easier than it sounds. But I do at least like that Marie-Laure is shown being capable of independent functioning.

As usual with my reviews, I haven’t actually finished the story. I’m about 79% of the way through currently, but for the most part I like it. It took me a while to adapt to his writing style, which often omits commas where they should probably be. This creates a feeling of rush or panic, which I gather may also have been intended. I think though that this may have been the most nounorthodox examination of said war that I’ve ever read.

ACCESS: It’s More Than a Device

As I go about my day-to-day existence with this great new tech that continues to come out and change things for me and so many other blind folks, a disturbing thing is starting to occur to me. Many of our older members are rapidly being left out, and if they actually get something it’s either poorly designed or they receive inadequate training in its operation.

Take for example an individual at my workplace. I don’t know her whole story when it comes to blindness, but I assume she’s been blind for an extended period. Or maybe not, who’s to say.

If so, it would be kind of odd for these things to continue to happen to her. It seems that she keeps getting stuff that she finds hard to work, for whatever reason, and when I go to help her, I’m not at all surprised that she struggles to take advantage of her tools.

First, she has this really tiny cell phone. Oh, it does speak a bit when opened, I think maybe one of those that you can kind of issue commands to. But, the buttons to dial, start, and end calls are so tiny that even I and my fairly nimble fingers can barely distinguish where one stops and the other starts. She will in many cases summon someone at break time who then helps her to place needed phone calls.

Then today, she asked me if I would set her watch. Ok, sure. The watch tells the time, but only really beeps when put into the settings mode. I wish it at least said “Entering Settings,” or something to that effect. And when learning which buttons to press, I initially caused some sort of song to play. I guess it was an alarm? I did get the thing set eventually, but yeah it would be tremendously frustrating for a person who maybe doesn’t have as much of a handle on tech to figure out.

See, stuff like this is why I had thought about going into Rehab Counseling back a few years ago. Too bad I’m not really cut out for that, but I digress. Now, I grant that some of these issues may be due to the consumer, and how much he/she is willing to learn. But I also know that many of the folks who are charged with ensuring that blind and low vision people have what they need to lead as independent a life as possible just slap something into their hand and say “here” without evaluating the fitness of device and person. If this is done, then in many respects the person may as well not even have the piece of equipment for all the good it’ll do them.

I guess there isn’t a whole heck of a lot I can do about this situation, except to bring it to the attention of the five people who read these words. I also hope that device manufacturers keep this stuff in mind, and make their information more readily available to even the most low-end user.

Truth be told, these days I’m starting to become more concerned even for those of us blind folks who are more proficient and can navigate iPhones and other smart mobile technology. As some have pointed out, and I can see this becoming a bigger and bigger problem, as these little machines become more computer-like, application developers are creating “prettier” apps without regard to whether they still maintain functionality with the onboard screen-readers. I’m looking at you, Twitter official iOS app which just lost Braille display support as the edit screen can no longer be easily accessed via swipe with VoiceOver when inputting a new tweet.

So, I hope we as individuals, as well as large consumer advocacy organizations such as the National Federation for the Blind and American Council of the Blind continue to apply pressure to these guys. Because just as quickly as we’ve gained access to all this revolutionary tech, we could lose it.

2345-125-15 12-15-1-136-2345-13456 135-124 12-1235-1-24-123-123-15

In its simplicity, it reveals the word(s) to so many on an 8-by-11 inch sheet of thick paper. At least this time-tested method had been the most common way to present written text to those who are blind for many years, taking me from the good ol’ days of primary school up through the proud moments of my high school graduation. Its existence ensured that I was able to get an equal education to that of my sighted peers.

It is not, in and of itself, a language, as so many think. Thus the question “is it harder to read this way than in English?” is an incorrect one. Rather, it is a medium: a means of transmission in the same way that print is.

“24-2345” 24-234 12-1235-1-24-123-123-15, and throughout this entry, I intend to pepper little bits of code that are to represent the dot presentations as we see them. View the Code Legend here, and try to figure out as many of the words as you can. Many can probably be ascertained by 14-135-1345-2345-15-1346-2345.

Braille is made up of different dot combinations that are centered around a six-dot cell. On the Perkins Braille Writer, the most regularly used device for hardcopy output, the dots are as follows: to the left of the space bar going right to left, dots 1, 2, and 3. To the right of the space bar, going left to right, dots 4, 5, and 6. The dots are pressed simultaneously to create whichever letter/number/symbol you wish to generate.

When viewing Braille characters on the paper, however, the dots are aligned so that dots 1, 2, and 3 are on the left side of the cell, while dots 4, 5, and 6 are on the right. I am not certain how challenging it would be to discern this visually, but know of many people who are able to sight-read Braille so suppose it can be done.

As I suspect many are aware, Braille was created, or more like modified, by the Frenchman Louie Braille, who had lost his sight due to an unfortunate accident involving an awl that stuck into his eye. This actually helped to give rise to the first method for writing in Braille: the slate and stylus.

1235-15-123-1-2345-15-145: Connecting the Dots: Braille in the Digital Age An excellent post recently written by one of my online friends.

While Braille is not a language, it does have the ability to shape thought. For example, take the oft-used phrase “knowledge is power”. Because Braille tends to take up so much space it also has a contracted form, called either Grade 2 or Contracted Braille. In this form, the word “knowledge” is represented by only the letter K. Oddly, this does seem to confer an unusual amount of power into that statement.

Well, I should say that Grade 2 Braille is what I grew up with, but that is now being phased out as attempts are being made to move to a single standard called United English Braille, or UEB. I don’t really know much about nor have I seen this type of Braille in action, but I hear that some of the symbols we’ve been used to are changed or removed. Hopefully, it doesn’t take us older folk too long to master this new incarnation, though.

I’m writing this, because in theory at least, I will get a new refreshable Braille display, the Brailliant BI 40, next week. This designation means that it has 40 of the six-dot Braille cells I referred to earlier, making it 15-1-234-24-15-1235 to read an entire line. I am happy about this, as the previous display I had only contained 18 cells. This meant a lot more clicking, and was generally not all that 14-135-1345-1236-15-1345-24-15-1345-2345.

This equipment is being provided to me via the National Deaf-Blind Equipment Distribution Program (NDBEDP), a trial effort to help individuals who need this technology but cannot practically afford it. In order to obtain it, I have been working for the past year with my deafblind specialist at the North Carolina Division of Services for the Blind, who has handled much of the paperwork and coordination with the Division of Services for the Hard of Hearing. There are some income eligibility and hearing/vision requirements, and so if you are interested I would advise checking with your state’s equivalent department(s) to see if you meet these and can be assisted. I think in my case, the ear infection incident I suffered earlier this year definitely showed why I should get my hands on a display as soon as possible. Not to mention it will be pleasant to be able to read books and create my own ideas of how characters sound without the interference of 15-123-15-14-2345-1235-135-1345-24-14 or human voices.

Currently, the cost of these displays is quite high, I would guess no less than $1500, and well upwards of 10 G’s for a high-end model. Happily, there is an attempt by two orgs to bring that down to around $300. It looks like those models would have only 20 cells, but that would still revolutionize access for people who aren’t able to utilize government programs for whatever reason. It also would bring the price in line with most other mainstream pieces of technology. I have high hopes that this will happen. I do not think Braille will disappear as technology advances, but as my friend said in her piece, it will become more accessible and useful than ever before. 123-135-1345-1245 123-24-1236-15 12-1235-1-24-123-123-15!

Five Years of the NDA

The organization to which I am referring, the Norrie Disease Association, has actually existed for more than 5 years. If my facts are correct, it was founded in 2006 by individuals with Norrie or those who are close to such individuals, (e.g) family members, certain medical professionals. The main purpose of the NDA is to offer support to all involved, advance ability to do and knowledge into research on Norrie-related issues, and to enhance outreach within the larger medical and social context.

I became aware of this organization in 2009, when they advertised to a group of us who had completed a survey about Norrie symptoms on their upcoming conference in Boston. I decided pretty quickly that I would in fact attend that conference, with little understanding of how my life would change as a result.

On November 13 of that same year, 2009, I sat outside of my apartment clutching a nearly dead cell phone to my ear and shivering as I tried to maintain reception. I was attending my first ever teleconferemce as a board member of the NDA, and man was I ever shy. I probably didn’t say much beyond “Hello” when I called in, and “bye” on disconnecting after two hours of chatter. To be honest, I wondered why I’d opted to volunteer in this way at all, and especially as I was in the thick of a crazy first semester at grad school.

Time passed, and with few exceptions I attended each monthly meeting. Slowly, a rapport built between me and the rest of the group, which also consisted of two other Norrie men, two parents of persons with Norrie, and a sibling of that same type. The thing that most brought me out of my shell was the feeling that others took my responses seriously, even if at first they may have been hard to hear, since I would mumble with little confidence.

The person who did the most to ensure that I found a bit of my niche as NDA boardmember was the late, great Mike Kosior. My understanding is that this group was initially his idea, and at that time he held the title of Vice President. He encouraged us all actually, making each person feel like he or she had something valuable to contribute. We hadn’t discovered until he died, but Kosior took the time to email us one by one, asking how things were going, wondering how he might help to make things better, and giving us all silly knicknames. I was “Chief”. Interesting.

I got to participate in planning for the 2012 conference, a month prior to which Mr. Kosior sadly passed on. It was tough to carry on anyway, but we all felt that he would have wanted us to do so more than anything.

I’d chosen to head the meeting of Norrie men at the conference to discuss challenges and such that we face among ourselves, and I admit and have been told in critiques that I didn’t do the best job in the world at moderating said discussion. I think that shortcoming was again reflective of my general shyness, a characteristic I hope I’ve managed to tamp down a bit simply by continuing to watch how other board members conduct themselves.

I imagine I may get a good chance to find out at our next conference, which is tentatively set to take place in August of next year. I have been vice president since August of last year, and admittedly I’m still not entirely sure what I should do with the role. I do know that I have big shoes to fill, and should begin making more of an effort to do so, perhaps just by taking inspiration from what I got to see of Kosior’s actions.

In any event, I look forward to serving for as long as it is deemed acceptable and of use by and among others. I agree with the president though that we need at some point to get some new blood, so that we keep things, people, and ideas fresh. So to the rest of you in our little Norrie community, keep your ears open for when slots do open up. We will need individuals who represent a number of different backgrounds. Till then though, here’s to another five years!

#WhiteCaneDay : A Big Piece of Freedom

Four cylindrical segments of aluminum, fitted together around a double elastic string. She, (because I want her to be a she), stands approximately 54 inches tall and comes to just below the second button on my comfortable sweater. She is the friend who is all good with me, as long as she doesn’t SNAP!

My beautiful, foldable, white cane. I often enjoy the stunned reaction I get when on public transit and I slide the holding string away and pop it open with a flourish.

“Wow, that stick is cool!

As an aside, I don’t have a great understanding of color, not surprisingly, so maybe you can explain why white is better than, say, red? Does red look too much like an emergency, and thus perhaps serve as a grater distraction rather than a signpost to just be aware? I’m curious.

In any event, today marks the 50th anniversary of National White Cane Safety Day, hashtagged on social media as #WhiteCaneDay. The National Federation of the Blind has published this article detailing the history and significance of this particular day. I immediately notice that it was born at the same time that equal civil rights for people of different racial/ethnic backgrounds were also being established. I doubt that this is entirely coincidental.

RELATED: Another great #WhiteCaneDay post: Don’t Fear The Cane

While I now consider her my friend, this “stick” and I were not always on such chummy terms. There are a few reasons for this, not the least of them being that my first metallic staff was a straight thing with curved top, like a candy cane. As a kid, I hated being further ostracized by this thing that I would have to slide under three chairs so as not to trip other children and teachers as they made their way around the class.

I knew the older blind kids had a folding cane, and that it would be a privilege afforded me if I got to a high enough level of Orientation and Mobility (O&M) to move around well and demonstrated a willingness to take care of the thing. Unfortunately, I did not always exercise sound judgement once I acquired that jointed object. For it also made a concealable weapon, ready to be whipped out as soon as I felt I was being insulted. Funny how quickly those halls cleared when it made that fantastic sound, like someone engaging in a sword fight. Get out of my way!

Into my high school and eventually college years, where I finally learned that she needed to stay on the ground, rising only high enough to make the taps that give me critical feedback about my environment. Are we nearing a curb? How far has the bus stopped from the sidewalk onto which I must step. And if I and my companion(s) in my blindness-oriented place of employment use proper skills, our extendable foldable friends will meet in the middle, instead of our heads! This is clearly a more desirable outcome.

As I practice these skills while out and about, I often wonder what some thoughts are that go through sighted people’s heads.

“No, ding dong, it’s not time to cross yet. You’re lucky I see you!”

RELATED: Travel By Leg: on my mobility abilities

“Aww, look at that amazing blind person who has dared to venture beyond his apartment and into the mean streets of town. I wonder where his attendant is?”

“Wait, is she really blind? She’s wearing glasses! Why the cane.

On this last point I’ll let a person with low vision explain more, but basically those who can see to some degree sometimes opt to carry canes in order to inform Joe or Jane Public that they might act in ways more consistent with individuals who are blind, due to an inability to take in a fuller picture of the environment. This can even include challenges in facial recognition, difficulties noticing where sidewalk turns to street, etc.

So if you see this person or any other using a cane, don’t make snap judgements regarding their visual acuity. Probably the best thing to do is clarity is really needed is to just ask, again as is always the case. And for my sake and all of those like me who wish to traverse our nation and world’s streets safely and in one piece, please use caution when operating a vehicle. Eyes on the road and your surroundings! Thank you.

I am grateful for those who have come before and worked hard and tirelessly to clear te way ahead for me. As the above-linked NFB article points out, as recently as 1930 most blind individuals didn’t dare venture beyond their home bounds alone. Now with a combination of fancy-shmancy technology and that good ol’ white cane, we range about as far and wide as we can dream. Here’s to 50 more years of safe, fun, informative, and ultimately life-affirming travel.