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.

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!

iTurn 2: and 12 Apps List

And now, I have had this wonderful piece of technology, the iPhone, for just over two years. The huge leaps and bounds in what it can do astound me, and give me plenty of reason for optimism going forward. I think we, those with disabilities, do have an obligation to stay on these folks and make sure that they continue to value accessibility though.

As I had last year, I thought it would be fun to list my 12 favorite, (i.e) most used, apps of this past year of the iPhone. I think they clearly demonstrate my love for travel, learning about the area around me, and gaining access to so much more information than I have ever been able to have before. The list is long, and so I’d recommend you use the headers to skim and look for ones you would like to read more about. Also, the ones with stars have received their second recommendation. So, let’s go, shall we?

Ariadne GPS:

I know that most blind folks have fallen in love with BlindSquare lately, I’m sure with good reason. I haven’t yet purchased this one though, and still enjoy Ariadne for its feelable onscreen maps.

I can click to explore around where I actually am, or put in another city to peruse its layout. This has actually proven helpful in some cases, as I would know which streets were nearby as the bus or other form of transportation approached where I needed to exit.

I have also discovered some interesting sites that I might want to visit someday, like the Museum of Broadcast Communications in Chicago? That sounds cool.

Finally, I enjoy the sounds it makes to indicate water, kind of relaxing, a park or green area, the highway, and even someone walking. It’s fun, and the price, about $5, can’t be beat!

*At Bat:

The official app of Major League Baseball, I love this one because it is so wonderfully accessible. They are the only sports league that even seems to get it, ahem NFL Mobile and NBA Gametime. I especially wish the NFL would step up to the plate and fix that thing! a fact about which I have complained a few times on Twitter. I’d listed theirs as one of my favorites last year, but they definitely broke things even harder this season sadly.

Anyway back to baseball. I can so easily view the schedules, standings, scores, and flip from game to game and team network to team network if I wish. I am glad that this app has basically remained the same as it was last season.

Audible:

Need I say more? One of several reading apps I use actually, I like it because usually the books are well marked up and I can stop at chapter’s end with the sleep timer. I say usually, because there have been some cases where the timing was off for whatever reason. This once led to an amusing case where I kept on reading past the bell while at work, having gotten so into the section without the timer stopping it appropriately. I had to run full tilt back to my work section after that lunch!

I began using this app to read a novel by Veronica Scott, one of my favorite authors on Twitter, at about this time last year. Since, I have consumed approximately 15 other titles. I like how quickly they can get new audio books up there, often very close to the same time the printed version is dropped.

Downcast:

A podcast-grabbing app, I’ve gotten more into this one over the last couple months as I aim to consume less cellular data. It will download and store content while I am on a WiFi connection, and I can listen to that content when on the move or at work on break. I love that the WiFi aboard Triangle Transit buses has improved so drastically as well, often allowing me to acquire new shows more quickly than I can even at home.

I don’t listen to a whole lot of shows, yet. Thus far, I subscribe to Airplane Geeks, Betty in the Sky with a Suitcase, On Being, and Serotalk. This usually gives me enough to listen to during the week.

Google Maps:

Well, I still love this app because it can show me where the nearest restaurants are located, as well as menus, numbers to call, and their website. The only thing is, in the last month or so I’m noticing that the menus seem a lot less accessible, as I noted on my birthday. They keep refreshing, and don’t allow me to finish checking all of the options before I am put back at the beginning. I hope they fix this.

I think overall though that this app now works a lot better than it used to. I haven’t really played with the Public Transit directions in a while, but believe that now even that information is more viewable with VoiceOver than it had been in previous iterations.

KNFB Reader:

I acquired this app only yesterday, and already it has risen to the top of my favorites list. It makes possible excellent object character recognition (OCR) on the iPhone. Heck, I would argue that I’ve seen some of the best OCR with that thing that I’ve ever known.

It’s technically not even supported on my current hardware, the iPhone 4S, but given that I’m due to get my 6 next Wednesday and I suddenly can’t find my mail-checking older neighbor, I figured I would go ahead and try it out. Once I came up with a method of holding the phone in the most optimal level position that involved placing both elbows on the table, putting both thumbs on the bottom edges of the phone and both middle fingers on the top edges, it read my text nearly flawlessly.

I often experience anxiety until I can find out what a letter says, and so finally having the freedom to view it immediately is a huge deal. Plus, one never knows in what other situations good OCR may well be needed. I should note that the app costs $99, but in my opinion it is money well spent.

NPR News:

Ah, I’m still and will probably always be an NPR junkie. This app allows me to listen to Morning Edition and All Things Considered wherever I am, as long as I can get an Internet connection. I also enjoy conducting random searches on topics that interest me and listening to audio and blog posts concerning them.

The app is reasonably accessible, though I wish they would only important the current day’s Morning Edition or ATC shows to the playlist when I click “Add All” as they once did. Now, it brings in the last 30. It can be difficult to tell when a show has actually ended.

Pandora:

This is the app that wakes me up in the morning and propels me out the door! I usually select from a varying list of stations. Sometimes I wanna bounce to some 70’s funk. Others, I mellow out to some early REAL! jzz. Or, I might open up my thinking pipes with some Mozart or Bethoven on the Classical Music for Studying Channel. All music is all good to me.

There was a bit of an accessibility kerfuffle when the names of stations suddenly became viewable only by enabling VoiceOver hints. I will credit the developers in eventually responding to and fixing this issue, though.

Rider:

A great, real-time transit app, I appreciate that Transloc Rider has worked to improve the accuracy of predictions regarding bus arrivals. This app has helped me and my sighted companions several times, by letting us know where the nearest stop was and when a bus would arrive.

The only issue we experienced with it is that we were never sure if the bus that was being referenced was inbound or outbound. This was usually not a huge deal, but it did mean that sometimes we would end up standing there 15 minutes longer than we had expected.

As stated when I last wrote about this app, I’m not sure how widely available it is. I guess you can try downloading it though and check it out. It definitely works with Triangle Transit and all of its associated networks (DATA, C-tran, CAT, Chapel Hill Transit, etc).

*Sports Alerts:

This is by far and away the best way for me to check scores on the iPhone. It reminds me of my Yahoo Sports days on the computer. I like that they are adding more information particularly to NFL and MLB scores, such as the team’s down and distance in the former and who is batting and pitching in the latter.

There had been a bit of an issue with refreshing, where the app would suck me back to the beginning of the list before I finished checking scores. However, this has somehow smoothed out with time. I think these developers do take accessibility into account, and I appreciate that.

Twitter:

I know many prefer to use other apps for this social media client, such as Twitterrific and Tweetlist, but lately I’ve much more enjoyed the native iPhone Twitter app. I’m finding it to be more stable, and haven’t yet had the kinds of problems with repeated crashing or it just becoming very slow that I experienced with those other two programs. I also like the way that it organizes conversations, making it easier for me to jump over threads with hundreds of replies (and yes I’ve seen some of those).

I am however having an issue where I no longer receive push notifications. I think this problem will be corrected once I am able to update to iOS 8 next week, though. So in the meantime, I just have to remember to check in periodically.

Uber:

Well I’ve been talking about this one for the past couple of months at least. For those not in the know, Uber is a rideshare service that allows you to summon a car with the push of a button on your phone. I love it, because I can put in my intended destination and get a fare estimate before departure. It also shows me the estimated time of arrival, changing as the vehicle gets closer. This makes life way easier for me, because I know once that timer goes to 0, if I still don’t hear anyone I should place a call. I have yet to have a bad experience with them.

I would say that the only thing I do notice is that the fare is usually at least a dollar higher than that which is quoted. This probably has more to do with the times I choose to travel though, and their subsequent heavy traffic. Again, for the last time I promise! if you want to try it out and help me in the process, use my promo code at sign-up: johnm1014. We’ll then both get a free ride!

And that’s my exhaustive apps list. I hope you find one or more that you can use and enjoy. Here’s to the coming years of iPhone 6! Mine had better stay straight.

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.

#BADD2014: Housing For All

For I think I saw, the 9th straight year, this May 1st was Blog Against Disablism Day. Hash tagged #BADD2014 on Twitter, it asked individuals to talk about an area where people with disabilities still experience significant challenges in image, access, or perception. I wrote a post for this last year entitled The Rarity of Multi, in which I discussed some of the unique things with which a deafblind individual, or really anyone with multiple disabilities, must deal. I’m late to the punch with this, but figured that the message was more important than timing.

As I write, I’m viewing a Twitter stream about individuals who are in Washington DC, participating in a rally by an organization called Adapt that is designed to highlight continued access needs for persons with disabilities in housing. I suppose these are most applicable to persons in wheelchairs, in that ramps, low thresholds, and the like should be available to anyone who needs them. But as they point out, creating housing that meets these standards would have the effect of making it easier for others to get in and out as well.

I can tell you from my experience that fully accessible housing is still very much a thing to be worked towards. In my area of the complex, for example, I can’t think of a way for someone using a wheelchair to easily get into my apartment. Well I guess there are two potential ways: either squeezing onto the porch from the right side, which would involve some scary ruts in which one might get stuck, or coming down a fairly slanted hill onto the area between C and D. I suppose the latter way would be best, but would I’m sure involve its own dangers.

And if they get to my door, they would have to somehow hoist themselves up over the high step in order to get inside. Again, I don’t know a whole lot about how wheelchairs work, but I assume this is possible to do? Someone can inform me.

As this grassroots movement points out, another big part of access is affordability. There is definitely a lack of affordable housing that is also in decent enough shape for a person to really feel comfortable therein. I guess that I am fortunate, in that all I really need to get by is four walls that generally hold up and a door I can lock. However, even these haven’t always been promised me in my current residence, as one day the front door’s lock inexplicably broke and my neighbor and I had to double team the maintenance people in order for them to comprehend the seriousness of the problem and come over.

Given that so many of us with disabilities are un or underemployed, having the ability to keep that price down is tantamount to maintaining independence. I’ve talked with some who tell me that they have been unable to find anything less than $800 that also met their access needs, when really they need a place in the $5-600 price range. Some of these individuals have health issues that mean they can’t really be in situations that might disturb them, such as locations with loud music or rowdy neighbors. Others are blind or otherwise unable to power vehicles, and thus need to live along a bus line and as close to groceries, recreational areas and the like as possible. And yes, one might argue that these folks can use paratransit, a specialized door-to-door service for persons with disabilities, but even this requires that you be within 3/4 of a mile of a bus line in order to gain regular access. Slow change is happening, but currently housing in these areas, and especially affordable housing, is too often sketchy.

I am mainly hoping to contribute something to the thought process around this complicated issue, and the varied solutions that will have to be implemented in order to address it. I’m sure that there are many voices who can point these things out more eloquently than I can, but figure that by granting it some exposure here, perhaps I’ll get others to check those other voices out as well. For we all certainly have the right to live in communities that help us grow and use our potential to its fullest.

Hear It: My Challenging Wax-cleaning

I should open by saying that I am trying as best I can not to come across as overly critical of anyone. I do not think for a minute that the medical professional who saw me intended for my experience to be as it was, and there are things I could have done to make it less likely to have gone that way as well.

That said, I have a disorder called Norrie Disease that renders some unable to communicate what they are feeling or thinking, due to moderate to severe intellectual disability, autism, or some other developmental challenge. So, I take seriously the idea that I can attempt to be a voice for others, of course not having gone through exactly what they are but still being able to give some idea as to what it may be like.

So an audiologist with whom I worked looked at my ears on my last visit to have the aids cleaned. This happened right before the phrenetic events of my Christmas vacation, and in many respects if the aids had to die on me again, I am highly fortunate that they didn’t wait past December 20th to do so. I can’t imagine the displeasure of trying to get by with only one working ear in large family gatherings. Even with both working, functioning in such gatherings takes work.

Anyway, she determined that my right ear in particular was packed to the gills with wax and should be dealt with immediately. She’d wanted to schedule an appointment for that day, but not surprisingly this wasn’t available. So, she had me booked to go in today.

For this appointment, I had to go to UNC Hospital, which is practically on the UNC campus. I managed to get to the Audiology department in time for my 9:45 appointment and settled in the lobby where they were watching some sort of weird cartoon. I also heard kids scampering around, probably burning off energy as their parents tried in vain to keep up.

Soon, I went in to see the nurses and have my initial forms filled out. They weighed me, I’m up to 141 pounds which may be the highest number this skinny person has ever recorded. Then, they started asking me all sorts of scary questions about disease, family history, etc. Standard stuff I know, but nevertheless it makes me nervous.

After a short wait in a doctor’s office, thankfully not too cold, and just as I pulled out the iPhone figuring that it might take longer for him to arrive, the doctor showed up.

“Ok, what are we doing here today?” he asked.

“I’m here to have my wax cleaned out,” I replied. “My audiologist says it’s starting to be a real problem.”

“Ok then, hop on up here,” (I was ushered to a somewhat reclined chair where my head was then placed firmly against its back at an angle), “and take out the aids, one at a time so you can still hear me and will know what to expect.”

Into my right ear went the air machine. I actually don’t really know what it is called, except that it made a fair bit of noise. I could immediately feel it sucking, and thought to myself “ok, maybe this won’t be so bad after all.”

And then, oh but then. He gradually amped up, commenting: “man this stuff is really packed in. That’s common for hearing aid wearers though.”

If I had remembered my last attempt at having this done, I would have suggested that we go ahead and stop there, just letting him prescribe me the eardrops he eventually did recommend I get. You administer them to each ear approximately three times a week for a month, and they’re supposed to loosen up the wax so that it will come out more easily. I’d done this a year or so ago, but then we never went forward with the larger-scale wax removal.

Unfortunately for me, this thought didn’t occur to me. As the machine pulled harder and harder in my ear, first tears began rolling down my eyes.

“Are you ok?” he asked.

“Yeah, this sort of thing just makes my eyes water,” I replied. I’m not crying! I thought to myself.

Within the next few seconds, I practically was crying. I kicked the table, screamed “ouch!” and all but forced him to stop. Oo man! I don’t think I’ve ever experienced pain like that. Oddly, the only thing I could think was “I wonder how on earth women go through with childbirth?”

“I’m about to pass out!” I instructed him once the machine had ceased operating and I’d removed both aids. “Would you happen to have any water available?”

I guess it had occurred to him that I might just need some water at some point, because a full styrofoam cup was in my hand a second later. I gulped it greedily, and just managed to stave off that unwanted episode.

After this, he decided to go ahead with the drops after all and have me return on February 13th for an attempt to complete the process. I was more than a little relieved to get out of there with my hearing in tact.

Except, when I plugged my right-side aid back in, all I heard was the faintest sound of its turn-on tone. “Oh no,” I thought in panic: “I may have lost a lot of my hearing in this ear!”

I muddled my way back on to a bus to Franklin Street to go to Walgreens and collect the prescription, then fired off an email to one of my audiologists to ask what she thought might be happening. I said “and if this loss is permanent, can I begin the process of getting a cochlear implant?”

She replied, correctly I now believe, that things would probably be ok in short order. My canals are kind of small, and thus it’s easy to get things like wax and such lodged in a place and way that it shouldn’t be. As the day has progressed, I’ve noticed more hearing returning as the pain lessens. All I can say to that is Thank God! I envisioned having to make radical changes to my navigation and independence, which I would have done if necessary. But I won’t lie, that sort of adjustment would be hard. I’ll probably have to make it at some point, I imagine.

So I guess the main reason I’m writing about this is to note the importance of really sitting down with the patient, doctor, and perhaps someone who can communicate on the patient’s behalf before treatment is initiated and generating a plan. The thing is, I know that doctors rarely have time to do this. If it doesn’t happen though, it could definitely have less-than-desirable consequences.

Also, it is important to listen to and be aware of the patient’s responses. I can say that he did suspend treatment once it became clear that I could no longer stand it. I’ve heard of cases where this hasn’t happened, and I’d bet it would be more likely if the patient was unable to speak for him or herself.

Just some stuff to think about. I hope all will be normal for me by the weekend, as I still feel some lingering pain but it is now more noticeably decreasing. A nap when I arrived home helped with this. I hope I don’t have any balance issues when returning to work tomorrow, but we shall see. More soon.

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.