Cha-cha-changes

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

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

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

RELATED: Five Years of the NDA

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

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

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

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

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

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

Five Years of the NDA

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.

DC On Air 3, Meetings and Marching Home

Friday:

Today starts early, as I take a quick listen to more local programming and hit the showers by 7 AM. I’d thought about opting for late check-out, but decide that I may as well just drag my bags to the couple of places I’d be going. It’s not like they are particularly heavy.

I make my way down to the second floor and am checked out by a guy who then claims he doesn’t even work at the hotel. This makes me a little nervous, but I guess all is well as there don’t seem to have been any further ramifications. I’d located my bill inside of my room just prior to departure, and so had only to drop off the room key at the desk anyway.

Then downstairs to await the first of my two meetings with long-time twitter friends. She shows up at 8, and we walk the few steps outside to one in a small chain of French sandwich shops called Au Bon Pain.

I opt for a delicious cinnamon pastry, and a cup of French vanilla coffee. This brings me around as we make small talk, I enjoying the never-fading novelty of hearing one’s voice in person after months of following them exclusively online. Actually, I’d heard her once before via a podcast to which I often listen, but she sounds different to me even than in that recording.

She needs to head back to work, so after about a half hour we walk back to the hotel’s ground floor waiting area. I don’t really call it a lobby, since it doesn’t even have a restroom. The lobby is basically on the second floor. I speak to the woman who works behind the counter about this, and she tells me that the hotel had been opened only 5 years ago. I’m surprised they opted to construct it in this way.

While awaiting my next meeting at sometime around 11, I sit in the chair and listen to that woman have a number of conversations with other guests. I also send and receive messages on my iPhone, while a man who works at some sort of major tech company watches.

“How do you use that,” he asks. “Does it talk to you?”

I pull out the headset and let him hear VoiceOver.

“See, I’ve been trying to convince the folks at my company that we need to make sure our products are usable by, people… people like… can I say?..”

“Yes, you can say blind people,” I tell him. I kind of understand his hesitancy regarding that, given that it can be a challenge to not use words that might inadvertently offend. While I am all for making sure to speak of people in the best way possible, I know at least when it comes to me I usually accept that maybe someone isn’t fully aware of which phrases are appropriate. The intent, the knowledge that we might wish to use mainstream products and can benefit from them, is more important in my opinion.

Eventually he departs to run further errands, and I settle back in to read. My next person arrives at around 11:30, and we go back to the same restaurant as before. Only at this time of course, I choose for a more lunch-type item. The chicken sandwich, with what I think was an unusual kind of cheese, is pretty good and filling. She has a broccoli soup that she says does not taste good at all. I knew it would be interesting to talk to her, because of her love of travel and the kind of work she does in blogging and social media. She is also deaf, but could understand me pretty well. Given that both of our lesser ear is the right, it makes trying to find a workable configuration for conversation a little fun. I do thoroughly enjoy the chatter, though.

She resides in the DC area, and so knows the Metro system well. I thus ask her if she can take me back to Union Station, only a stop away, so that I can go ahead and await the Megabus there. We actually take an escalator up higher to hop into the subway car, which then makes its way underground as it approaches Union Station. This is my first time in the DC subway since 2000, and my first on a subway period since 07. The major urban transit nerd in me will always find this exciting.

Once we arrive, she suggests that I wait downstairs in the Amtrak lounge, because the seats are more comfortable and it has WiFi. But once she shows me where the Megabus will board, I opt to stay on that level and in the other waiting room she finds. I somewhat regret this, as the air smells heavily of pain, but in the end all is well.

I get in there at approximately 1:10, and don’t depart until nearly 3:20 once my bladder begins to rebel. I flag someone down who helps me find a restroom, then choose to sit on a bench outside, even closer to the roaring buses but free of the nose-numbing smell of that room. I inform someone else that I wanted to board the bus that leaves at 4:15, and so suddenly at 3:50 my bag just disappears from under my leg.

“Time to go,” that person then says.

Um, you could have warned me first, pal. I’m thinking someone is stealing my luggage!

Tweet Signpost: So long to our nation’s capital. It’s been real.

I press my nose to the window as my sightless eyes take one last look at the city and the GPS names off streets. We pass by the Verizon Center, Constitution Gardens, and the National Mall before making that bone-jarring bounce back onto the bridge, over the river, and away.

I talk to my seatmate for a few minutes, finding out that she will stay in Durham on Friday night then be picked up by friends for a fun weeklong trip to Wilmington. Then she informs me that she wishes to sleep, so I fall silent and pull out the entertainment boxes.

Not much of note happens for the rest of the trip home. We pull into Durham Station shortly after 9:30, pretty much on time. I am somewhat dismayed to learn that my cabbie hasn’t in fact shown up. She sends someone else after me, mainly so that person could get some money and experience in picking up loyal clients. Only that person decides it’d be nicer to get a big fare, securing a couple of Raleigh trips right off of that bus. So my usual cabbie hears about this, becomes somewhat upset, and makes her way back across town to get me. But by this point, I have gone ahead and hopped into the van that was to take my seatmate to her hotel, with us splitting the fare. I badly need to use the restroom, and the facilities inside of that bus station have been shut for the night. After procuring fast-food, as I know my refrigerator is all but empty, I finally, mercifully arrive home.

And that is the end of a fun trip to DC, during which some light networking especially within NPR may have occurred. One thing that organizing this did show me is that if one wants something enough and knows the right people, one can make it happen. This is a really important lesson for me to keep in mind at all times.

There is some degree of irony perhaps in my journey taking place just before the 50th anniversary of MLK’s March on Washington for Jobs and Freedom occurred. As I’ve pondered this over the last few days, I wonder if and to what extend persons with disabilities played a role in that march. I guess not all that much? I have heard of some powerful civil rights protest by individuals with disabilities, though, and just as with many minority groups in this country, much progress has been made but much remains to be done. We’re here though, our faces will be seen, and we will continue to push for more! Join me?

My Tech Experience, 1997-2007

In 1997, I was first introduced to the glories of Email. Well kind of, as for the most part our screen-reading software wasn’t exactly able to interact with the now primitive clients used to send and receive messages.
I’d taken a course over that summer at North Carolina State University. This was designed to prepare me for the academic side of life in college, which of course was rapidly beginning to include interactions with and an understanding of the Internet.
At that time, in order to work with the messages I occasionally had to receive, I’d have to get a sighted person to read them on the monitor. Also, I would take exams by writing the information into my affore mentioned Braille Lite and taking it back to the Rehabilitation Center on the campus of the Governor Moorehead School for the Blind to print it. This introduced some integrity issues, leading the professor to allege several times that I had cheated because I achieved no less than a 98 on any of the exams. I certainly hadn’t cheated though, and was able to prove my high level of understanding of the subject matter, Interpersonal Communication, during the group final. The group in which I was included obtained a score of 99, highest in the class by far.
By the time my freshman year began that Fall at the University of North Carolina at Charlotte, Job Access with Speech (JAWS) for Windows, was finally becoming more widely used. This is the screen-reading, (text-to-speech) program that Freedom Scientific developed. There were at that time a couple of other solutions for accessing information vocally, but JAWS was by far and away the preferred option as it was most able to support needed software in the employment setting.
Many different synthesizers work with JAWS and its ilk, but the one I still primarily use because it’s easiest to hear is Elloquence. Here’s a sample. I know you may find it challenging to understand still, but trust me it’s a far cry from the days of the Braille ‘n Speak.
I gained my first real exposure to this when having to take exams in the campus office of Disability Services. It took me a while to master all of the keyboard commands, and often if I even so much as accidentally alt+tabbed out of my exam’s file I’d be hopelessly lost.
By 1999, it had become clear that those of us who hadn’t grown up with the current technology would need to be fast-tracked so that we could get enough of a grip to remain competitive in class, work, etc. So, the North Carolina division of Services for the Blind put us through a week-long crash course in the Internet and email, also at the Raleigh Rehab Center. We were asked to type a sample paper into Microsoft Word to learn about spell check, formatting, tables, and the like. We also had to conduct searches on a site called 37.com, that supposedly aggragated the functionality of a bunch of search engines. This was certainly in the time before Google had risen to prominence. A highlight in that for me was finding the first video any of us had located online, a trailor for the Titanic movie after having been prompted by the instructor to type in “largest moving object ever built by the hands of man”.
I took my newly acquired skills, especially email, back to UNCC that fall and spent hours in one of two university labs that had computers with JAWS loaded on them. I browsed sports scores, read the newspaper, but used much of that time composing messages to people I wanted to get to know. One of those regular correspondences did nearly lead to a deeper relationship with a woman, as I ended up taking her number and going home that holiday season with a stack of long-distance calling cards so that I could continue chatting with her. For various reasons though, that kind of fizzled out.
By 01, the Division of Services for the Blind had begun providing personal computers to students on a larger scale. Many of these systems were used, and so they weren’t of the highest quality. Still, I found it very cool to finally have a machine in my dormroom, and to thus be able to hop out of bed at 2 AM and get online.
I slowly became more proficient, mainly because I was surrounded by some really gifted blind individuals who taught me how to do many things. They sat with me as I banged on the keys and swore at the unit as I struggled to configure instant messaging software. Plus they showed me the wonders of downloading music! Oh c’mon, I know y’all remember Audio Galaxy. It was magical to be able to type in a random song and suddenly hear it in my speakers. In my defense, I hadn’t realized that was illegal at the time, although I don’t know how as we weren’t having to pay for it.
When I had to relocate to Southern Pines in 03, actually an even smaller town called Pinebluff, I signed up for dial-up service with Earthlink. I hadn’t initially realized that I could dial a number in Southern Pines, and so was calling one in Fayetteville instead. Hello $250 phone bill. Oops? My folks accepted my apologies for that, as sadly I didn’t have the cash to reimburse them for it then. Lessons learned.
I could barely get online though, because by the time I finally won the phone wars with everyone else in the household it’d usually be well after 12 AM. And, it was so slow! I did think the sound made when one was connecting to dial-up was kind of cool though, it just sounded technological.
On moving back to Charlotte later in the summer of 2003, I acquired cable Internet access, and the rest was history. Finally, I could really stream audio online. Baseball, football, Internet radio stations, you name it.
I actually think that not a whole lot more significant happened between that point and 2007, and so I’ll go on with the rest in the next entry.

I Get Around

On Twitter I follow Micki Maynard, a reporter who just announced the Curbing Cars Project. This is an effort to get a sense of how and to what degree our transportation choices may have changed in the last few decades. In short, how do we get around? I’m participating, by keeping a diary for a week on my transportation interactions to collect data that will then be used, along with many others, to get a sense of wider trends.
As a person with a visual disability, I obviously have never been able to drive. This may well change in the future though, as companies like Google and others continue to make strides in creating cars that won’t really need much input from their drivers in order to cruise the streets. I suppose there are reasons to be leary of this invention, and as many say in reference to that the idea of blind people in such automobiles by themselves will be slow to catch on even if they are proven safe, mainly due to what some call social capital. This means that the general attitudes will have to moderate, which will likely take many years.
So until that beautiful time comes, we have to cobble together the easiest way to get across town and to hit the road. Many would say that’d be paratransit, but well that just depends.
And what is paratransit, you ask? Loosely defined, it is a patchwork of accessible vehicles, usually an offshoot of a city’s fixed-route transit system, that takes clients with verified disabilities from door to door. I don’t know how wide that criteria spans, but they definitely work with people with mobility difficulties and blind folks. Someone conducts assessments to determine whether an individual can cross streets and thus gain access to fixed-route buses. The way it worked when I was in Charlotte was that if you actually could hop the bus sometimes, you were able to get a pass that would grant use of both systems. This meant I could use the paratransit to get to work, and still have an unplanned day on the town if I wanted.
That last is an important point, and the main reason I don’t often use paratransit. Many systems require you to call at least a day in advance in order to book a ride, mostly because of the logistical challenges involved in planning routes. I discovered why having such a policy does generally make sense, but still one rarely has everything thought out even that far in advance.
Here in Durham, I still haven’t signed up for the local paratransit system. I know there are some legitimate reasons why I should do so, but the paperwork will take a while to process. Plus, even if I do opt in, I’ll likely still take the Durham Area Transit Authority (DATA) and Triangle Transit routes to work, because they are considerably cheaper. Here I can’t get one of those combination passes, but must instead pay almost double per ride on a paratransit vehicle.
The only area in which I see using paratransit potentially benefiting me would be in getting to the grocery store. Although even that has been mitigated some by my having found an excellent taxi driver who always charges me a predictable price and also will walk me up and down the aisles as I acquire the goods.
This gets to my final point about getting around, especially as it applies to persons with disabilities that make it difficult to drive: it can be a real challenge! Often even in the cities with the best transit systems, there are times where one wishes to just jump in a car and get to somewhere quickly. What about when it’s not an ambulance-level emergency but one must confront an issue that suddenly crops up and do so without a big hastle.
Most of us have the experience of dealing with kind, well-meaning friends who may in the end make us feel like a nuisance because we have chosen to ask for their assistance to reach a destination. Usually in these situations, our options are limited. Yet I at least always try to ensure that an individual whom I’ve asked can feel free to say no. And believe me, because our options are so limited it is far better for you to say no as quickly as you can rather than just kind of sitting on the fence, so that we can look into whatever other possibilities might exist. Often, it’s almost worse to actually get what we want done but feel a person’s inconvenience over having to do this thing while tired or wishing to do something else than to just let it go by. So if I ask you, or anyone needing such a service does, please let us know what the deal is. And if you feel you should charge for that favor, please state it. I then have to make the decision whether I can pay your named price or come up with another means of getting where I want to go.
These are just some of my thoughts regarding transportation for persons with disabilities, about which I admit I think a lot. I invite others to chime in with their thoughts as well.

From Trivial to Powerful, The Effects of Social Media

So this’ll probably be a short entry, assuming I manage to crank one out at all. And with class starting tomorrow, that day’s post will be a short one as well.
I wanted to quickly talk about a couple of ways that social media, (e.g.) Facebook and Twitter, have worked in my favor or allowed me to work in someone else’s.
Many point to these modes of communication and suggest that they are major time wasters on which little is actually accomplished. To a large extent, I wouldn’t disagree with this. However, some pretty cool things can happen as well.
The first of these is trivial, I’ll admit, but to a friend of mine and I it will make for a more enjoyable NFL football season if it actually happens and is accessible. I had called NFL Audio Pass Customer Service on Friday when I purchased this product, because I wanted to see if there was a way I could listen to games on my iPhone. I was assured by a rep that if I downloaded the NFL 13 app, I would have the sort of access I sought.
When Sunday’s preseason game kicked off, I launched the app to see if I could find that audio. Now I’m a bit concerned about usability with VoiceOver, because the screen seems to refresh every five seconds or so, taking me back to the beginning. Other apps refresh also, but they manage to leave me in the same place even as they do so.
Anyway, I saw only a way to upgrade to a premium subscription that would allow for viewing of four games per week along with other NFL network content. In response, I tweeted “Ugh very disappointed in the NFL Mobile app. I don’t even see a place to listen to audio only to subscribe to video feed. #GetItTogether!”
A few minutes later, an account for NFL Mobile’s Customer Service, that had only been created like a week prior, responded, talking a couple of us through what we should expect. At least they were aware enough to know that such issues might crop up, I guess.
In a nutshell, they said audio should be available by the time the regular season begins in a few weeks. It’s not a real big deal if it isn’t, as I can just listen to the games via the computer, but the convenience factor is that to which I am most looking forward.
The other way that social media has had a major effect on me is by what it allows me to do for another. I have for months, years really, tried to help quite often new parents of persons with Norrie Disease, the disorder that has caused my blindness and hearing loss. Google is a wonderful thing, and so people sometimes show up with questions and concerns. So I corresponded with someone via Facebook, not actually realizing that I was acting in my official capacity as a member of the board of directors in the Norrie Disease Association. I certainly do understand the overwhelmedness that can result when you find out that your child has a condition that might result in a varying set of disabilities from mild to moderate hearing loss to possible intellectual deficits. My take home message is always this: first, many of us go on to live normal, productive lives and do great things for ourselves, our families and friends. But no matter the situation, everyone’s quality of life is improved when he or she experiences a loving, vibrant environment that encourages the highest degree of functioning possible.
I know for a fact that my folks sometimes feel frustrated and/or sad watching me deal with hearing loss. But they try their best to understand, and never make me feel like I’m less of a person for it. For this, I feel extremely blessed to live in the era I do, as I’ve said earlier in reference to my attempts to gain more meaningful employment. Probably less than 50 years ago, many of us would have just been shoved away in an institution and darn near forgotten about by all. And I should say that I don’t think this was often the family’s choice, but they were in many cases railroaded to make such decisions by supposedly well-meaning but quite misinformed medical professionals.
So I feel good if or when I am able to help others to deal with all these challenges, and am always here to do so in whatever capacity I can. As I noted in the letter I wrote for potential board re-nomination coming up here at the end of this month, I stand in the legacy of the NDA’s founder, the late Mike Kosior, who left us far too soon. I hope he is happy with what I’m trying to do.

Just Another Insane Workday

Because what weekend doesn’t end crazily? I’m certainly hoping things get to be a bit more to my liking as this week goes on.
My cousin and I sit in the four-bedroom house, chatting. One of our old, favorite country albums plays in the background.
“Wanna go swimming?” he asks suddenly.
“Yeah,” I reply.
The delicious scent of fried chicken and baked macaroni and cheese follows us as we make our way onto the back deck and maneuver around a collections of chairs irregularly placed. I slip out of my shirt and shoes, walk down the stairs, dive in, and!… lurch out of bed toward the restroom, as I suddenly realize the problem.
I was mostly relieved that my clock only read 2:15, instead of the 4:15 that would mean I must go ahead and shower. But I made the classic mistake of browsing the notifications that had poured into my phone while it rested in my pocket, Do Not Disturb setting activated so that only the vibrating alarm would rouse me.
I don’t know if any sleep was had after that, but in any event it was far too soon by the time I did in fact have to make my way toward that warm-to-hot water. I turned on the brain cells as best I could, hoping mostly to come up with some kind of topic in order to keep my writing challenge goal alive of pumping out an entry every day of this month.
You know, I’ve never really done that. Oh sure, I posted in my Live Journal continuously for a little over 2 years, but not all of those were actually written entries. Many were those silly Internet memes, polls, or low-quality telephone voice posts. So it remains to be seen if I can measure up to this high bar. I do enjoy your feedback, as that may well be the thing to keep me going.
Anyway, back to my day. I chose to dress nicely, not because I had to but because it sometimes boosts my confidence and mood as the week begins. On stepping outside, I was glad to have made such a choice. It seems fall is coming in with a vengeance, or perhaps my already low cold tolerance levels have fallen further. They said it was approximately 63 degrees, but I stood quaking in my Sunday shoes as cars streamed by and I awaited a slightly late Durham Area Transit Authority (DATA) Route 11 bus.
On boarding, I flashed my Disability Discount ID card, deposited my pass into the slot and waited for it to magically pop back up, and took my sideways-facing seat. I was nervous, because that vehicle had a disturbing rattle as we headed down the road. It sounded this way when I took it on Thursday as well. I suppose there isn’t anything really wrong with it, but still.
At the Durham Station transit center stop, I made small talk with the woman I’ve seen fairly regularly for almost 3 months. She has a complicated story, the likes of which I’ve not entirely figured out. But it seems she’s from Las Vegas, has two children, and is either in her 20’s or 40’s. I get somewhat different answers on different days! She’s really kind however, and always has an encouraging word even though she doesn’t seem to feel all that happy with circumstances much of the time.
The Triangle Transit Route 700 that takes me on my second leg to work was also significantly late, arriving at nearly 6:15 instead of 6:00. Maybe today was just a particularly bad traffic day or something. This meant I got to work at 6:45 AM, and had only 15 minutes to clock in, suck down my required coke, and tune in to some NPR.
By clicking on the work tab, you can get a sense of what I do, or at least used to do, at this location. Today though is spent as much of the rest of these last two months have been, just kind of passing time. They did say some sort of project should be ready for us by tomorrow or Wednesday, thank goodness.
At about 2:30 my supervisor brought over a collection of belt buckles that we were to sort into piles of 100. This held us for most of the rest of the day, until we finally ran out of boxes into which we could place the piles.
You know, I’m trying to have a better attitude about all of this. An intelligent woman on Twitter pointed out that this was essential in order to eventually rise above my current situation. But I’ve spent almost exactly 10 years, as one could argue that I began my job search on July 31 of 2003, trying to find something that would really be desirable.
I know the numbers: 70% of persons with disabilities unemployed, and those of us who are fortunate to be working are mostly in sheltered workshops such as the one in which I currently work. I am, more than anything, glad to be alive in an era when I can realistically hope to change that not only for myself, but also to give keys, information and insight to others so they can change it as well.

On Friendship and Fantasy

Just plugging along, not a whole lot to see here. But, I know it’s high time for me to put finger to plastic key again and find something to talk about.
I suppose the most interesting occurrence has been the solidifying of a friendship at work. I’ve really gotten to know the guy to whom I referred a few entries back, as we continue to sit beside each other in our old section. We can sit there having deep talks about forbidden topics such as politics and religion, then start singing for the next hour or so. It really does make the workday go by a lot more quickly and enjoyably.
I know people have often said that this is an important reason why persons with disabilities should be employed: to really get that chance to connect with and become a part of a community. I certainly hadn’t thought I’d experience that in my current setting, though.
That connection is nice, but it demonstrates to me how few other such venues I have outside of the workplace. As the temperatures have climbed here, many of my friendly neighbors are choosing to remain inside and under the AC. I suppose I can’t blame them there, but it means I really need to find the neighborhood watering hole or something, someplace where I can go to party or just let loose for a while.
One would think I’d have found such a place after nearly half a year. Half a year already! I can’t believe I’ve been in Durham that long, as I can still clearly remember sliding on dangerous ice that pelted down relentlessly that cold, late January day.
Perhaps the biggest reason why I’ve kind of lived on the outside looking in here is that I’m a creature of habit. First, of course, I mostly just turn to my online friends for conversation. This is fine, but lacks some critical component as I’m re-discovering by my burgeoning work friendship.
Secondly, I still like to spend a lot of my off time in Chapel Hill, primarily because being in that environment makes me feel revitalized. I think though that the c-change is beginning, and soon enough this area will truly feel like home.
I want to close by offering support to an author who has crafted a book that very much explores issues surrounding friendship and disability. This book, called The Heart of Applebutter Hill, was written by Donna W. Hill, who I think has some degree of blindness herself. It seems to be a young adult fantasy piece featuring a 14-year-old blind girl named Abigail and her close male friend Baggy as main characters. Abigail’s guide dog Curly Connor, usually referred to as the “Fluffer-noodle” is also prominently featured.
During the school year, Abigail lives in a town called Applebutter Hill after having been banned from her previous locale due to a number of complicated societal reasons. She has to spend the summer with a family called the Blusterbuffs, (that’s another thing I like about this book, the strange names), because her primary guardian has left town to attend to some other business.
This story asks one to expand what one believes in, bringing back some of the magic of childhood imagination. For instance, the two main characters encounter a transportation vehicle that seems to be a sort of flying boat, and are informed that only they can see and interact with it. They also meet and take in an acorn that can expand and turn into a small man who can walk around on tiny legs.
I haven’t read the whole story yet, in fact I’m kind of just reaching the halfway point as I make my halting way along while on bus rides to and from work. But it is clear that these individuals will find adventure, get themselves into and out of troublesome situations, and generally grow closer as the story progresses. I obtained a copy from Smashwords for just $6.99, and I’d definitely say it was worth it. The writing is excellent, and one very quickly becomes swept away from mundane reality and into this interesting and unusual world. Also I’ve seen somewhere that the author uses proceeds from this book to help people gain access to Braille in areas where it might not otherwise be possible, a very worthy cause in my opinion. So check it out.

Thinking Of Attending Grad School? Some advice

Dove-tailing off of last week’s Grad week posts and still quite relevant as people are walking the stage this week too, I thought I’d give some, unsolicited, advice on entering grad school. If you’re planning to go this fall, I’d hope you’ve completed many of these suggestions by now. Even so, they can be used as a sort of checklist. If, like me, you’re mulling over the idea of getting it going in the fall of 2014 or later, then you’ll want to consider these along the way.
I speak from experience. I also speak knowing that it’s pretty difficult to understand how to implement some of this unless you’ve actually walked through the fire, as much of what people tried to tell me went into one ear and out of the other. There were some aspects though that I’d not been made aware of at all, so perhaps what I have to say will help at least one person to obtain a Master’s or Ph.D. in one go, rather than having to suffer the humiliation of being dropped as I was and trying to figure out a way to get things restarted. So, let’s go.
My first recommendation is probably the hardest for most folks of my generation: try to enter with a clear goal. Sit down with yourself and ask: “What am I trying to do with my life? Is there anything I think I can stand going through the fire for, sacrificing social life, sleep, and the like to attain?”
I don’t know if I grasped the necessity of this thought process until it was far too late. I came in with the same mentality I had as an undergrad: I don’t really know why I’m here but I’ll figure it out as I go.
The big problem with that is you may find it more of a challenge to direct your research. And if you can’t direct your research, you may never get your major project, (in my case it was just the literature review that was meant to begin my major project) to a level that departmental advisors would consider defensible.
So I think that what I’m going to do this time, once I decide on the general degree I wish to pursue, is to begin talking to as many current and incoming students and professors about work they’ve done. It also pays of course to chat with program alumni about actual jobs they’ve managed to get as a result of receiving this degree.
In my previous program, projects and requirements rarely changed unless new professors were brought in. This means that, generally speaking, you may be able to take a look at past syllabi and actually get a bit of a jump on some of the projects that must be completed. Goodness knows I’d have benefited from trying that! All of the initial reading and writing of several papers that were suddenly thrust on me meant pretty much instant overwhelmedness from which, it can be argued, I never really recovered.
Following on that, and this is very important, know the style of writing (e.g.) APA, MLA, that your program uses. And if you don’t know how to write in that style, please! Make an attempt to learn before arriving on that first day. They will likely test your abilities in this area immediately by making you compose a small essay wherein you cite sources, use formatting, and the like.
I was directed to see if perhaps the good folks at my university’s writing center might be able to help me out, but I believe they provide most of their services to undergraduates. Perhaps this shouldn’t be too unexpected, as an individual on the graduate level is expected to have a basic understanding of paper composition. There are various reasons why some of us may not have that understanding, and so I’d just suggest that you keep it in mind that you should work on sharpening it before getting started.
Given that I’m totally blind and largely deaf, many of my suggestions are aimed at persons with disabilities. Still, I think it benefits anyone to be aware of the kinds of technology that will be necessary to stay on top of in-class assignments. For example, I got bonked by my inability to use PowerPoint in organizing two major presentations in that fateful first semester. Not that the presentations were all that great even without them, but especially for the treatment manual I had to write for a Diagnosis class, I may have managed at least a P or pass, (B by most grading systems) rather than the L or low pass C, I actually got. That grade forced me to retake the course the following year.
Especially for others with disabilities that require materials to be made accessible, I’d recommend sitting down with all of the professors as well as staff from the campus Disability Services office to discuss how each project will be made doable. Try to avoid surprises if at all possible. I found myself surprised a few times, and was usually too intimidated by the time that I realized I hadn’t a clue how to get something done that I failed to notify everyone in a timely manner.
Finally, and speaking of surprises, make sure you have enough money to get through that first semester without there being too much financial stress. Seriously, by November I was drawing dirt from my bank account and praying that somehow I’d get it accepted as payment of rent and other expenses. This meant that as the major papers of that semester ratcheted up, I had also to worry about cobbling together enough pennies to avoid being tossed out onto the streets. I think even this issue could have been mitigated by making small changes to my budgeting habits.
That’s just a little advice that I write here more for my own memory than anything else. If if helps you to experience more success, then that’ll be a pleasant byproduct. If you are planning to start that journey some time soon, I certainly wish you well.