Tag Archives: Disability

All Aboard for a Much-needed Weekend

Posted on by John

Do you have that person in your life who always gets you, no matter what? The one who, because of similar experience and an upbringing that involved many of the same challenges is someone to whom you always look for advice or just to vent. That person for me is my cousin: technically a year younger than me but seeming older in many respects.

For our early life, really until mid-20s, we were never that far apart. Both of us are totally blind and have significant hearing loss due to a condition called Norrie Disease, so we have to work hard just to fit in to this world. We went to college together and lived in an apartment (albeit a slum) for six years.

Then life rolled on, and we were both fortunate to marry wonderful women. That has though necessitated changes in our relationship, as is common for all adults really. Now, we usually see each other maybe three or four times a year (with the time from January of 2020 till May of 2022 being the longest we didn’t get to spend time together due to Covid).

Anyhow, that’s slowly, finally, starting to change. This past weekend, as my work life ramps up and I feel increasingly nervous about my hearing challenges, I decided to see if we could just have a marathon Saturday watching sports and talking about nothing and everything as I like to do. My cousin and his wife agreed to allow my visit, so I purchased round-trip Amtrak tickets from Cary North Carolina to Charlotte.

I had to get the 5:43 Carolinian train, being fully aware of likely delays as it makes its way all the way down from New York City. And delays indeed happened, with emailed announcements throughout the day that the train was getting later and later.

I had Lyft take me over to the Cary station after a long day at work trying to hammer out the material for our upcoming Microsoft Excel workshop. The building was cold, and I found myself wishing I’d chosen to stay outside in the beautiful Fall-like weather to wait. I sat, snacking and reading, and tried to make myself take a break so all of my devices would make it onboard with a little life left.

The train finally arrived shortly before 7, and as I feared I was given an aisle seat so couldn’t plug in as easily. I always feel weird about asking my neighbor if I can stretch the cord over their legs.

The ride down was uneventful, and we arrived in Charlotte around 10. Knowing I would want to pick up food on the way to my cousin’s house, I decided to try downloading the Jack in the Box app to see if I could place an order in advance of getting there. I get Jack in the Box whenever I visit the Queen City, because we don’t have any of those in our area. And this would have worked, if I had already entered my payment method or at least set up Apple Pay. Trying to do that at the last minute just… didn’t work. Choosing the menu items I wanted though was accessible. Anyway, the driver just rolled me close enough to the Drive-through window to put in my order and I collected the food and headed to my cousin’s house. I do love this tech that makes it so much easier to independently move around and run errands.

Because it was already nearly Saturday by the time I finally arrived, we just stayed up a little while listening to the NFL game in Brazil and scarfing down the food. Then we retired for the night. I’d already understood that we would mostly be spending Saturday together anyway.

Knowing these folks wake by 8 AM, I was crawling out of bed just as the smell of bacon and eggs permeated the air. My cousin texted me, and I headed on down to sink my teeth into it. A small cup of orange juice and a big, piping hot mug of coffee completed the morning.

As far as sports go, our Alma mater UNC Charlotte (they call themselves Charlotte in the sports world) played, and were pretty much slapped around by, the North Carolina Tar Heels. Bowling Green University gave Penn State a scare, and number 5 Notre Dame were nipped by the Northern Illinois Huskies in an awesome upset. The prime-time game, North Carolina State University versus the University of Tennessee, was a bust as State were dragged all over Charlotte’s Bank of America Stadium.

While the games played, we chatted about our roles as Assistive Technology Specialists. We also noted the recent availability of high-powered, AI-driven Phonak Hearing Aids (NOTE: those may or may not be the right ones). Anyhow, I’m considering trying to get those, as they’re supposed to be really good at filtering out background noise. I have a hearing test (Oh fun! Except not), scheduled for September 18th, at which point I will begin this conversation with my audiologist. Where the money will come from for such a thing? Well… we shall see. No doubt I need it though, to help my rising career.

After our day of fun, we got food from a restaurant called the Skrimp Shack. (They mean Shrimp, but ok haha). I had a giant chicken “sammich” that I could not eat entirely, and a big styrofoam to-go plate of fries (the small is really small, the large is really large, no in-between). The food was really good, though.

And that was the crux of a great Saturday and weekend. I’m writing this as we speed back toward Cary on Sunday morning from 6:45 till 9:45. A bit of amusement: as we departed Charlotte, the conductor said we would be arriving in Cary, our next station stop, in 25 minutes. Cary takes three hours to reach, as suggested by the time I just posted, and it is not our next stop coming out of Charlotte. He meant a town called Kannapolis. I can only assume that it was too early in the morning for him, as it is for me of no or very little sleep. Although for some strange reason I feel hopped up on energy right now. Let’s hope that lasts till my Carolina Panthers (NFL) play the New Orleans Saints at 1, and hopefully start this season off right. You can’t get much worse than our 2-15 record the previous season. I do hope more of these restorative weekends are in store, and that you are able to find a way to lift your spirits when needed as well.

UNDERHEARD: Eating Out While Deafblind

Posted on by John

If you are like me, you wonder how and among whom the restaurant custom started. The idea of eating out in a place humming with activity, where all sound seems to merge into a full-on roar at times and you are left at the mercy of the wave as you, hopefully, enjoy some good food.

And of course before continuing, I fell down a rabbit hole and discovered, via a website on The History of Restaurants that they were supposedly started in France in 1765. I cannot attest to the veracity of this story, and wonder if some other culture might also lay claim to their origins. Anyhow, it’s good food for thought.

However they started restaurants are a venerated tradition of U.S. holidays and continue to bounce back after the dark days of Covid. Well, sort of. I accompanied my wife, her parents, sisters, and my niece and nephew by marriage to Red Lobster. That particular establishment does not seem to be faring as well, with many having gone into temporary closure and the business as a whole in bankruptcy. I guess they served too many shrimp.

We went to celebrate Father’s Day on Saturday, as is usual for us. It’s often less crowded on this day than if we wait till the day of, though going to eat at Fullers, a delicious local (to Fayetteville, N.C.) eaterie that serves just about everything Southern you can think of for Mother’s Day on the Saturday before, the place was brimming. I joked that it felt like someone was drilling a hole in my brain, because there’s just no really good setting on my hearing aids to help me handle such ruckous. But I made it through, as I always do.

Red Lobster, by contrast, was relatively quiet. We arrived at just prior to 2:00 and departed just after 4:30. I conversed some with those in my immediate vacinity, and ate my fill.

Ok first I had one of those delicious cheese biscuits, which according to my last doctor’s visit I don’t really eed to be eating. But hey, I offset that with a side salad. When I chose to order that salad, I expected to get basically a bowl of lettuce with bleu cheese dressing (another of my guilty pleasures). But actually it was loaded. Little flecks of meat, another kind of cheese (I’m not food afficianado, though I did apply to a food magazine as editor and they told me my resume was good once), croutons, and other stuff. Hey, my wife and I joke that my food critique is as follows: Real good, Good, Ok, not good, nasty! So there you go. Anyway, I had to stop eating before I became full off just that serving.

As we broke bread, talking about work, home, and life, the main course arrived. As I had on my previous Red Lobster visit, I’ve only eaten there twice if you can believe that, I had stuffed flounder (real good) with some kind of seafood sauce) and fries. I decided to walk on the wild side and went for a glass of mango lemonade, (good, I guess)? I don’t eat a whole lot of seafood, but I suppose it can be good on occasion, and I know it’s generally healthy as well.

The last sort of interesting thing I want to think about as a blind person is how we handle visiting the restroom. I needed to go before hitting the road, and it just made me think about my general strategy for finding what I need to find in there. When I enter through the swinging door, I immediately move toward the right wall and make my way around in a counterclockwise direction. This is because, at least in most of the men’s rooms I’ve seen, the sinks to wash hands are just to the left of the entrance with toilets in front. If I move in that direction, I usually manage to locate a stall, exit it, and get to the sink without any embarrassing mishaps. This time? Well, it was sort of strange as I did bounce off of someone as I made my way to the sink. Naturally, he then began providing assistance. It didn’t go completely sideways at least.

So there you have it, a little look into my mind as I work to negotiate the social norms that surround a typical holiday in my family. I enjoy it mostly, and by this point I know that most of the concerned parties know about my challenges and do not think any less of me. But sometimes having these hearing problems can be a struggle. Like when I find myself on a paratransit vehicle with a new driver who loves to talk, but I can’t comprehend him over the engines, as happened recently. I’ve learned though that the best, and really only, thing I can do is make the other person aware of this and take it as it is. More of my shenanigans as the summer time unfolds.

Why a Blind Man Watches Spacecraft Launches

Posted on by John

And yes, I used the word “watch,” as it commonly refers to consuming video content. I “watch” TV or YouTube, or what have you.

I tried to watch the launch of the new Starliner spacecraft yesterday, but unfortunately they still haven’t been able to get it off the ground. Of course because it is a new machine, I’m sure they have to take every caution in putting it into the skies. But I find it particularly interesting to catch it, as this will be only the sixth different American craft created since the U.S. space program began.

My earliest memories of humanity hurling things out of Earth’s atmosphere are the same as many of my generation: the very sad Challenger space shuttle disaster. Because a teacher was going into space, all of the schools had us tuned in to watch this spectacle unfold. I think I only partially understood what had happened that day, because I was only 6 years old. But it gave me my first taste of a desire to explore and the dangers that could come with it.

This desire was deepened, oddly perhaps, by the little-known sequel to Charlie and the Chocolate Factory (one of my all-time favorite books by the way) called Charlie and the Great Glass Elevator. In this one, Charlie ends up riding the elevator, I think from the factory, into space where he encounters aliens called Vermitious Knids. I guess they were a sort of stand-in for bad kids? Looking back on his writing, it seems maybe the author Roald Dahl didn’t like kids too much. Anyway, I remember the aliens smelling like eggs, and I was rapt by this nonsensical story. It even awoke in me a need to meet people not of my background who brought different perspectives and lived different lives.

As I got older I watched many of the shuttle launches, always feeling a thrill as all that audible power thrust them up, up, and away! I’ve read nearly every story written about the Apollo missions, and was most focused on how the astronauts felt as they left our planet, a slow ride at first with increasing G-force and speed until suddenly you go slack and float off of the couches. How I would love to experience that.

My interest in space and space travel went through the roof (clouds?) with the Apollo 13 movie starring Tom Hanks, which I got to catch in theaters. It was even more awe-inspiring to hear that power projected through a good sound system. And obviously getting those folks back home safely after everything unraveled is one of the best examples of the good we can do when we choose to work together.

Fast-forward to 2011 and the second-to-last shuttle flight. I sat in the lobby of my graduate school department building, feeling ho hum as I faced an insurmountable workload and had no clue how to deal with it. So I took a break and listened to the shuttle blast off. When I finished, I met a wonderful Lebanese woman who helped me get through that last, bumpy year and a half. I have an entire entry about her if you’d like to read it, but it again showed me the power of meeting and getting to know people from different backgrounds.

And as we are still stuck in low-earth orbit, I have read and am reading some sci-fi novels that take me many parsecs (I learned that a parsec represents roughly 3.26 light years) away and years into the future. The Noumenon series, by Marina J. Lostetter, is one of the most imaginative series I have ever read, and I’ve read many of them (the Frank Kitridge Mars series is also excellent). In Noumenon, she has them awake while traveling incredible distances rather than being frozen. I like how she takes care to represent all kinds of people, including multiple cultures and even people with disabilities (a deaf woman and one in a wheelchair play significant roles.) The books, three of them, are long but worth it. So if you get the chance, check them out.

So yeah, my interest in spacecraft launches and space travel overall stems from all kinds of experiences. Hey, maybe I’ll do as I told my mom and be the first blind man on the moon (I’ll plant my cane there!)

#GAAD: On CAPTCHA

Posted on by John

Today, May 16, is Global Accessibility Awareness Day. Its purpose is to increase awareness of and understanding around why sites and components of sites need to be accessible. Of course complete accessibility refers to much more, ensuring that all areas of life are available to persons with disabilities. But I think this day has a primary focus of digital and web accessibility. In that spirit, I want to show what can happen when the various accessibility issues have not fully been addressed.

I made a post way back in 2006 in Live Journal, (remember that? Almost 20 years ago now!) In this post, I railed against CAPTCHA, which stands for Completely Automated Public Turing Test to tell Computers and Humans Apart (Taken from This site.) First, that’s a mouthful. And second, it has been the vain of my existence since its inception. In those days, those of us who were totally blind were pretty much left out of the experience entirely. This meant that, for example, we could often not sign into websites that had put CAPTCHA in place, because we couldn’t “type the characters you see on the screen.”

Eventually, and I’m sure with a lot of elbow grease and advocacy, web developers began to understand that there were a significant number of individuals who were being barred from accessing their products because of this spam-fighting tool. So they answered the call by creating audio CAPTCHA, where words or numbers are spoken aloud, often with some kind of noise in the background to make it harder for computers to pick up what is being said. The voice is also usually not completely clear. And this works for a lot of totally blind people, meaning they are able to “pass the test” and get done whatever it is they are trying to accomplish.

The problem? What happens if you have little or no hearing and partial or total blindness. I am totally blind and significantly hard of hearing, so even the clearest spoken language can be hard for me to follow. If they deliberately make it hard to understand what is being said, I will be lucky to get, say, two of the five words they say correct.

I had this happen just yesterday. While trying to complete a recovery of my Microsoft Outlook account (I locked myself out because I couldn’t remember the password, another issue about which I could write an entire entry,) I encountered one of these lovely CAPTCHA. I switched from visual to audio and must have tried eight different sets of words before I gave up in frustration. I’ll have to get that sorted eventually, but at least I’m still receiving email to my account. I assume it will be lost if for some reason I log out of my Outlook.

Ovviously, this can cause much bigger issues if one cannot access a site that uses either visual or audio CAPTCHA, and as far as I know deafblind individuals don’t really have a way to get past it without sighted assistance. I did try to have some of the various AI solutions locate and read the characters on the screen, but I don’t think they are easy enough to discern.

I guess I’m wondering why we even use these methods, in the age of two-factor authentication. Maybe a code could be texted to a user’s phone? I know this would not be a complete solution as some folks do not have phones that can read text, but it would allow many more to have easy access.

Alternatively, I’ve seen some sites that ask relatively easy math questions for the person to solve to prove their humanity. Whatever the case, I hope people continue to be aware of this issue and the very real stumbling block it puts in some people’s path.

Freeing Refreshable Braille for More Access

Posted on by John

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

Posted on by John

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

Posted on by John

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

Posted on by John

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.

Cha-cha-changes

Posted on by John

Welcome to the first official post of 2015! Yeah I know, some of the Louisiana entries were made during 2015, but they were referring to an event that happened way back in ancient times of the year previous. So, here ya go.

Man, has this year gotten off to a rockin’ start! It is setting up to challenge me in ways I’ve never really been challenged, but that will help me get closer to where I want to be pretty quickly. These changes are happening on both a professional and personal level.

First, excitedly, I have been named President of the Norrie Disease Association. This was necessitated by our previous president having to step down due to some unfortunate circumstances that have made it difficult for him to continue in that role. While the reasons make me sad, I am still appreciative of having this opportunity and hope I can make the most of it. I got a strong vote of confidence from my fellow board members, though I honestly am not entirely certain why. Me? One who is sometimes too shy to make a simple phone call? Who definitely has a ways to go before he is as assertive as he would like to be? But, I hope I have made and am making progress in this area, and it will help to have such knowledgeable people to assist me as I do so. We’ll see if this August’s conference goes off fairly well.

RELATED: Five Years of the NDA

Second, this city and the Triangle Transit system have decided to pull a bit of a switcheroo on me. They’ve altered some of the routes that I take, especially that which I use to get home from work. I hadn’t known this initially, I suppose because I wasn’t smart enough to check the service changes page they posted shortly after the year began. This meant I got stuck at Durham Station downtown for 30 minutes, in the cold wind! I have since been trying to learn how to get from my old bus to the new one, and a cool thing is that BlindSquare GPS, an app on my iPhone, can actually tell me where the buses are within the station. Well it probably has some set database that doesn’t change often, as some of the numbers are transposed a bit. For example, the 700 now stops where the 400 used to, so it still calls that the 400. But as long as I know this, I can easily still use it to track my location. Hopefully I will know it by rote soon enough.

The final change I will talk about at this point is in my reading habits. Check out my 2014 Booklist, which you should find in the “Pages” section of this site. There, I note that I consumed 34 titles last year, a record for me. Many of these titles were by so-called “indie” authors, as I’ve befriended them on Twitter and wanted then to check out their works. As local writer Monica Byrne noted in an article that discussed her book, 2014 was actually the year of the indie author in many respects. One of its best reads, The Martian, had been put out by an unknown guy named Andy Weir. The thing I most liked about this book is that, while he clearly knows his stuff regarding what the planet is like, how one might experience a mission there, etc.; he does a good job of making things understandable to those of us who maybe don’t have such advanced knowledge.

I also took in more nonfiction than I ever have before. I’m thus starting off this year in the same way, currently reading a very popular title called The Immortal Life of Henrietta Lacks about a black woman who’s cancer cells were scooped in the 50s, implanted in a dish, and have gone on to aid in lots of research, medications, and the like. It’s an interesting read.

I have it as a goal this year to reach fifty (5-0!) books. That’s a lot for me, as I normally don’t have a whole lot of time to sit and read. I’m doing them two at a time though, and already about a third of the way through both books three and four.

I have them all in my iPhone these days, using the Audible, BARD (Braille and Audio Reading Download) mobile, iBooks, and Kindle Apps. All of these apps have their pros and cons, but as far as functionality goes I think Audible tops the list. In Kindle, if I happen to get a notification it shoots me to the top of the page I was currently reading. In iBooks, I am slowed by having to wait for the page-changing announcement to disappear, though I suppose I do like this announcement since I can keep track of my progress. And in BARD, the audio books work fine, but I wish the Braille books would be automatically marked when you stop. If I forget to set a mark before closing the app, it’ll jump back to the beginning of the book and I must then find my place again. Depending on how far I’ve read in, this can take a while!

Anyway, that’s a quick scan of 2015 as it has unfolded thus far. It looks to be an entertaining year, full of unexpected occurrences. I just hope most of those are favorable for me and for us all. More soon.

Five Years of the NDA

Posted on by John

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!