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 15-124 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.

Tools To Build A Dream: The sleeper

He kept dreamin’
(Dreamin’)
Ooh, that someday, he’d be a star
(A superstar but he didn’t get far)
But he sure found out the hard way
That dreams don’t always come true, oh no

Read more: Gladys Knight And The Pips – Midnight Train To Georgia Lyrics | MetroLyrics

Midnight Train To Georgia, by Gladys Knight and the Pips (YouTube)

Oddly, I’ve had this song bouncing around in my head ever since I began planning my Atlanta trip to visit one of my sisters. It probably has more to do with the Amtrak that departs from Greensboro, North Carolina at 12:22 AM for Atlanta. This makes up the second leg of travel if one wishes to reach the city of peaches? peach tree city? haha I don’t know Atlanta’s knickname but imagine it’s something to do with peaches right?, from Durham.

First The Backstory

Because every character must have a backstory, and my family is full of characters.

Many of us see social media’s dark side: its tendency to isolate us and make a person more likely to hold a conversation with someone 2,000 miles away than one sitting right across the table from him. Board any bus or train these days, and you’ll note that there is an element of truth to this assumption.

However, there are some silver linings. For instance, I think that Facebook has made our somewhat scattered family more aware of what is going on with each of its members than we have been in many years. Most of us don’t really have easy access to constant transportation, or else priorities like kids, jobs, etc mean that we must stay relatively close to home. The online space allows us to celebrate achievements, pick each other up, and otherwise respond on a near daily basis, bringing some real closeness back.

So, my eldest sister responded to one of my recent Facebook posts by saying that she would really like it if I made the journey down to Atlanta someday. I thought about it, and decided why not sooner rather than later. I go to see my cousin most holidays, and while I will always enjoy hanging out with him and would do so whenever possible, a little variety is, as they say, the spice of life. Daring to do something different creates unexpected opportunity, as I most certainly discovered throughout this vacation. I left Friday and returned yesterday.

The First Leg

As the Friday workday drew to a close, I was already feeling concerned due to a wave of tiredness brought on by Sunday night’s lack of sleep. How does that make any sense, you ask? Well, I never really get the chance to fully catch up if that initial workday is offkilter, at least not till the next weekend. I figured what the hey though, after that long overnight train ride I would be way out of sorts anyway.

The cab deposited me at Durham Amtrak Station, and after stepping inside of its frigid confines to retrieve my boarding pass, I insisted on waiting in the mugginess that threatened rain.

“I’m not built for cold!” I told the woman behind the counter as she slid the ticket into my hand. Maybe it’s a sign of how many times I’ve passed through that station that she was saying “Hi, Mr. Miller” before I even got all the way to the counter. And her voice didn’t even sound like one of the people I know for sure.

The train is supposed to leave at 5:24, but that big thing is almost never on time. Yet for a holiday weekend it did remarkably well, rolling in at 5:39. A passenger ran up to assist me, because she hadn’t seen that one of the other women who works in there, my favorite, was making her way out. As I made my way down the aisle, a pair of hands popped out to suck me into a row and I settled in.

“Hi,” I said, because I must always attempt to greet the person sitting next to me. I allow them to decide if they wish to converse further.

Immediately, this person was interested. It seems that she rather suddenly lost a significant amount of sight, especially her central vision. I don’t know much about how sight works, but apparently this makes it hard for her to identify faces, view things that are either too close or too far away, and results in a classification of legal blindness. Understandably, she has found the adjustment challenging. I talked about how I can empathize due to the fact that I have lost so much hearing over the years and have to keep re-thinking how I handle social situations. Unintended feelings in others of having been snubbed by simply not knowing that our attention was being requested was definitely a common issue.

I’m never sure to what degree I am helpful in such situations, but this is a big reason why I am always open to talking to people about my blindness, heck we may as well say deafblindness at least if not wearing hearing aids, and how I cope. I’m just hoping that she can use technology that she already has, like the iPhone, to at least mitigate some of the changes. I will continue to do what I can.

The train arrived in Greensboro pretty much on time, after another minor delay while we awaited the passing of the Raleigh-bound train. I was interested, because I would finally get to enter their vaunted station.

On entering, I met a nice individual who made sure I had everything I needed from arrival till departure. We got to their little coffee shop just as it was closing, and I snagged a Mountain Dew. Then, she dug up menus from somewhere and I placed an order with a place called, I think, Big City Burgers for, you guessed it, a burger and fries. It seems that any restaurants in that general vicinity will deliver to the station, which is pretty cool. Given that I had six hours to wait, I had contemplated taking a cab somewhere. I guess this saved me some dough, though.

I didn’t do much else, except wolf down that sandwich, listen to some of the college football game between Syracuse and Vilanova, and read a little. The wait didn’t seem that bad, so long as my wonderful entertainment device was charged and functioning. And speaking of, if you have a smart phone or tablet and don’t have an external battery, I recommend getting this one from Amazon. It has changed my life. Well ok that’s probably an exaggeration, but you get my point.

The Second Leg<

Because the train left from Greensboro’s station, it departed right on time. This time, I was seated beside an older woman who wrapped up in her blanket and dropped off pretty quickly.

In fact, the whole cabin felt almost otherworldly, with the whistle sound drifting in as if on a fog. This may have had more to do with the mode in which I had my hearing aids set. I’d wanted to see the lounge on this train, if that were even possible, but figured it would be hard to summon someone with everything so quiet. No stations were called either, and after a 45 minute stop in Charlotte, we largely just kept on rolling.

Continued in next entry, as it stretched on into Saturday like my flight to Madrid nearly 10 years ago. Stay tuned!

Getting To Know You

I have always found it interesting the ways in which we become aware of those around us. I think especially among those who are blind, we are often not fully aware of the degree to which others watch, perhaps learn from, and become familiar with us from afar.

I especially noticed this this past week. I had to miss a day of work, because my left ear, the good one, decided to ring really loudly and make it difficult for me to function. This usually happens when we experience drastic swings in temperature, but for some odd reason it occurred on the day before said temperature changes took effect. It ended up being a plus, as it created an opportunity for me to go grocery shopping during the day. Less crowds, easier to get in and out, etc.

When I returned to work the next day, I was somewhat amused by the number of people who came up to say they’d noticed my absence and missed me. They knew my name, but I couldn’t really tell you who they were. In addition to my blindness, I am also atypically quiet in there. I’ll speak when spoken to, but generally I remain lost somewhere in my thoughts. I suppose this also explains how so many end up just getting to know me in a hands-off sort of way.

The phenomenon of knowing starts long before we even begin to speak. I’ve had the pleasure of participating in many of my twelve nieces and nephews’ upbringing, and was always amazed by how attached to me they became. They each seemed to have their own ways of preferred connection: one I could lure into a calm state by using a strap, another liked to listen to me whistle a tuneless melody as I walked him up and down the hall, and a third just needed to know I was in the same room as he was. This last one left me feeling like perhaps I could actually hypnotize him, as I could say “you’re getting sleeeepppy,” in that funny, dragged out voice and he would indeed quiet.

They would also, I believe, demonstrate that they knew I was unable to see them. Whether they thought this by choice or fully understood that my eyes didn’t work, who knows.

My niece, for example, would make a humming sound as her little legs propelled her along the floor and to me, until she was able to tap my leg.

And once, the strap-loving nephew decided I needed assistance into the laundry room to put my clothes into the hamper, and then back into my mom’s room where he knew I liked to watch sports with my dad. He may not have even been a year old then, and hadn’t really developed speech yet except for the ability to make a sound that approached “here”. Then he grabbed one of my fingers and led me around the house. I guess he’d seen enough of me nearly tripping over his and others’ toys. It was cute.

Even nonhuman animals are capable of getting to know from afar, of course. I think primarily of the little toy fox terrier that my sighted cousin had when he moved into our Charlotte apartment in 2008. I have never become as close to any living creature as I did her. Sad? Perhaps.

She especially enjoyed interacting with me when I sat in the big, comfortable swivel chair I had at my heavy oak computer desk. She’d tap her little head on the side, stand back a few inches, and watch me turn to face her so she could then leap into my lap. Then she’d lay there, picking her head up if I began to talk to her or demanding attention occasionally with her paws.

She most showed her understanding of my likely limitations once when I’d taken her out for relief. I guess I’d gotten lost in my thoughts, and she decided we’d go for a longer walk. She probably had tried to get my attention somehow, but I didn’t notice. Next thing I knew, we were on the other side of the street and behind that set of apartments.

“Look what you’ve done!” I yelled as I tugged on the leash. “Now how on earth am I gonna get back home?”

She then slipped through a narrow fence, causing her collar to pull hard and come off of her neck. Now if she’d done this with my sighted cousin in tow, she’d think “freedom!” and “game time!” and take off. However, she probably knew that I couldn’t catch her, so she sat down a couple of feet in front of me and waited for me to reattach the collar. Then, she got ready to cross the lot and, probably, correctly head for home. I didn’t fully trust that we could do this safely though, so I pulled back on the chain. I believed she then deferred to plan B, which was to find an apartment with a human inside that I could ask for help. I did this, and an old man who walked with a rather pronounced limp assisted us back to the right place.

I’d guess that getting to know one another, and discern likely motives, has significant survival advantages. And, of course it helps us get whatever it is that we want from another, as well as to give to others what they might enjoy. I’m not sure blind folk will ever be really good at fully understanding tendencies, since there’s so much we miss by lacking observational abilities at least from a visual standpoint. But, I certainly do pick up on and have an uncanny memory for voice, smell, and other odd quirks. Just something I’ve been pondering all week. How much do you pick up from others as you go about your day? Are you always watching as a new individual comes into a room? What about other kinds of sensory information.

On Healing

A series of recent events have me thinking about how I feel about life with dual disabilities. Specifically, to what degree would I want to mitigate or perhaps eliminate at least the medical component of said disabilities, should that become more possible in the future.

I suppose because I wasn’t born with significant hearing loss, but have had to adjust to it over the lifespan, I would definitely opt into something that promised to correct my hearing. I’m pretty sure now though that I’ve had some loss in that area even before I had become aware of it.

Certainly the technology to enable one to hear, at least in an electronic way, has progressed in leaps and bounds in recent years. Many see this in the existence of the Cochlear Implant. One thing that gives me pause in goingfor a CI though is that I’ve heard it can throw off sound localization, making it difficult for someone who is also blind to navigate safely around his or her environment. I think one could adjust to this, but I know not how long that might take.

I recently met an individual who is a mental health advocate, writer, and one who has assisted many people with disabilities in learning the social landscape. This person shared with me a video in which a woman hears sound for the first time via a cochlear implant.

I’d heard of this video before, and its attendant controversy. I guess people’s biggest concern had to do with the notion, right or wrong, that it would serve to enhance the public’s idea that perceived disability must always be a bad thing and should thus be dealt with. Some were also not sure how to take having such a private, emotionally jarring moment aired online. My position on that is it was her personal decision to do this, and should be seen as such.

I could be wrong, but it seems to me that deafness doesn’t get quite the social taboo that blindness does. I mean I suppose most wouldn’t actively choose to be without hearing, but many individuals who are deaf only can get good jobs and do things where their competence is questioned a little less. Are they discriminated against in some ways? I’m sure of it, and especially when attempting to communicate with others who are not deaf and don’t know sign language, or take in programming that isn’t properly captioned.

But when many see an individual who is blind, they automatically assume that some sort of sin has stained their soul. Some of the braver folks figure that God has actually appointed them to lift that sin, as a person tried to do this morning.

I’m strolling along, enjoying the birdsong and wind that finish waking me up as I head toward the bus stop. I get to the street corner, and over the sound of a roaring machine of some sort, maybe a lawn mower? I don’t know, I hear someone calling, maybe my name?

Are you talking to me?” I ask, turning to face the voice.

“Yes,” she replies. “God says he wants me to touch your eyes.”

And before I can stop her, she has practically smacked me in the face! She pounds my eyes a couple of good times before I softly remove her hands and push them down.

“Um,” I say: “I’m just trying to cross the street, an now I’m distracted. Can you tell me when to go?”

“Yes, but you gotta feel what happened! You have to believe! God’s gonna open your eyes in a week!”

I just say ok, and thank you, and shuffle on down towards the stop.

Because I’ve never seen before, I can’t even begin to imagine what it would be like to suddenly have working eyes in a week. I guess it would be like that woman’s reaction times 100, as I’d be bombarded with stimuli that I couldn’t make sense of without the proper context and training. I wonder if people who hope for such things to happen to a totally blind stranger have even stopped to consider the ramifications of the situation?

Second, I think I’m made just the way I’m supposed to be. As with hearing, I don’t begrudge anyone who wishes to be able to see after having been totally blind whenever it becomes feasible to do so, but I definitely don’t. I guess in many respects, I would feel like I’m giving up my “self” as I currently know it.

These are certainly interesting and complicated issues, and I know many who are working to find their own answers as they deal with one, both, or some varying combination of them. I guess what it comes down to in the end, as I said when someone at a small church I went to thought of trying this same sort of intervention, is to respect the person’s humanity. Ask them questions about what they might want you to pray over, or if they’d just prefer to be left alone. Because what you think you see in someone else is not always what is.

My Tech Experience, 1987-1997

I had written an entry like this in my previous blog, but it got sucked down the drain in the great Spam attack of mid-February. Ugh. So, I shall try again. Also, this’ll be more comprehensive. There’s a pretty good chance I’ll make at least two and perhaps three entries out of this, so as not to go entirely too long. Plus, it’ll give me some days and topics in this challenge.
Now, this topic is going to be more of interest to the sighted people who may know little or nothing about the kinds of soft and hardware that blind folks are able to use. I’m writing it specifically because someone I came across in the #31WriteNow challenge asked questions about this, and hey what am I if not a divulger of information? So, why don’t we start from what I think is the beginning.
My first interactions with technology came about in approximately my third grade year. This means 1987-88.
I’m not savvy enough to know which kind of computer we were using, other than that it was one of those big, clunky Apple machines with attached monitor and on which you had to flip a switch on the back of the unit to power up.
Remember those loud six-inch floppy disk hard drives? One had to insert a disk in order for the system to work, and if you popped it out prematurely it sounded as if an electric shock was being delivered! Even though that sound terrified me I couldn’t get enough of it, having to be admonished repeatedly by my teachers to “cut that out!”
Attached to our unit was a specialized external synthesizer that we could adjust and turn off and on independently of the computer itself. I believe at first, the synthetic speech may have been generated by whichever program ran on the disks we used, but I’m not entirely sure about that. Anyway, by today’s standards the voice was rather annoying. I wonder how I even understood it.
We primarily used the computer at this time for gameplay. My favorites were Space Invaders, one that asked you to listen to an ascending tone and whack the space bar whenever the tone matched where you were on the screen, supposingly causing you to hit the invading alien ships. This tone would get faster and faster until eventually you misfired. I could spend hours with that one.
Another favorite was the Math Olympics, a fun, multiplayer game that had a series of problems to solve in order to take home the medal. Each player selected a country to play under, and the winner would have its national anthem played. Ah, the sneaky ways to educate children without them even being aware of it.
Most of my typing skills were actually acquired on a typewriter, though. We had a big, electrical thing, and I loved feeling like an officeworker as I struck the keys rapidly, enjoying that sound and making no doubt countless errors. In 1992, I used that thing to nervously hammer out a Valentine’s note to one of my first crushes.
By about that year, technology took a considerable leap forward for blind individuals. I think it had existed in some form prior to that period, but that was the first year my school system got access to what were called Braille ‘n Speak machines made by the company that would eventually become Freedom Scientific but was then known as Blazie Engineering. These things were amazing to us, because for the first time we had a really portable device on which we could write Braille quickly and efficiently. They also had somewhat boring synthetic speech voices by comparison to today’s technology, but my cousin, a number of friends and I never tired of playing with the speech rate and pitch and doing such silly things as making it read a long string of A’s, variably punctuated sentences, and any other thing that would make the voice react oddly.
I have a synthesizer on my machine called eSpeak as part of another software application that I will profile in a later entry. While not exact, the uninflected eSpeak voice nearly approaches that of the Braille ‘n Speak. Listen to a short sample.
From my technological point of view, not much really changed up through 1997. They did eventually create a better version of the Braille ‘n Speak, called a Braille Lite, that had a refreshable Braille display. This is a device that uses little pens to simulate the dots one would feel on a Braille page. Some, like the Braille Lite’s, are built entirely into the machine, although it is more common for the units to be detachable these days. They are fantastic pieces of equipment, however the price of these is prohibitive for most would-be users.
This had sadly been the case for most all blindness-specific technology, but fortunately those old barriers are being bulldozed. In subsequent entries, I will detail how some of this has occurred. From 1997-2007, the rise and proliferation of the personal computer, still dominated by two or three screen-reading products. From 2007-present, the introduction of cheaper, effective screen-readers, and the rapid accessibility gains made with smartphones.