Ah, the much-delayed Friday entry! But, I’ve been running like crazy ever since my return, as so often seems to be the case the wrapping up of the conference seems to have heralded the beginning of a new era for me. Let’s see if we can still remotely capture the essence of that Friday with any kind of accuracy, shal we?

Fri, August 14

Up early, surprisingly very little drag after sleeping like a log the night before. I read from 4 till approximately 6, then zip through shower, inhaling a blueberry muffin, and other morning tos and fros as we prepare for the day.

We get over to the hospital, first going through that cold lobby, then being relieved that the floor on which the conference is hosted isn’t similarly chilled. She and I are pretty much the only ones there when we arrive, but this suits me well. Better early than late any day.

She notes the interesting view from the large windows that look out toward an apartment building just across the way from the hospital. A woman gathers her pillow, covers, and the like from a bed she has placed on the balcony, where she apparently slept. We surmise that this may have been due to not having air conditioning inside of her apartment. Not a lot of northerners have it, or at least they hadn’t. I think that’s starting to change these days.

She also sees a man step from his place onto a balcony a floor below and make quick gestures with his hands, as if saying a quick prayer. He doesn’t stay out much longer than that, though.

Finally, others start to trickle in. As with my other times attending the conference, I am fitted with a hearing loop. Only this time, I never quite get it to work well, as it is staticky and difficult to discern what is coming through the microphone. I wear it for the first half of the day, then just give up.

And now, it’s my turn to get nervous! I sit there with my palms becoming more and more sweaty as Dr. Kathie Sims goes through the preliminaries, introducting everyone to the facilities and telling us how things will basically work. It is just after 8:30, and in a few short minutes, I will give a speech as President of the Norrie Disease Association that I haven’t even really practiced.

Dr. Sims introduces me, but first we have a surprise for her. She is about to retire from her post at the hospital, and so we give her a gift card to a local restaurant called Ester, and a plaque engraved with the words: “In appreciation of your years of research, work and dedication to the Norrie Disease community.” It is one of those rare moments where I wish I could see facial expressions, so that I could gauge how she reacts to this gift. I bungle it a bit, but ah well, I’m learning on my feet!

All things considered, the rest of the speech goes pretty well also. I give brief intros of the rest of our board: Jean, (kind of an advice-giver who has plenty of previous board experience to back it up) Cara the treasurer (Brains of the operation,) Paula and Rikki (Co-membership chairs and both fierce advocates,) Jan, (our long-serving secretary who must somehow hear through all manner of phone noises, including people washing dishes (that part made people laugh)), and of course myself. I then give a nod to our recently resigned members, Bruce the former president, and Mary, the person who largely made me feel comfortable at the conference.

I then outline our future vision of where to take the NDA, noting primarily that the conferences, while good, can be costly both to the organization and those who wish to attend. To try and remedy this, or at least add a new angle, we will look at making smaller online presentations that can be available to whomever wishes to attend them.

I wrap up with a tribute to the late Mike Kosior, whom I’m sure I’ve referred to earlier in this blog. He sadly passed just prior to the 2012 conference, and I remember him for his belief in me, willingness to help me try and locate other employment, and the nickname he gave me via Email: Chief, which I think suggests that he foresaw me taking such a position.

Our next speaker, the keynote Jonathan Mosen, gives a speech entitled The Gratest Gift (Text which is inspirational and meant to lend hope particularly to parents of those with Norrie. If you haven’t, I’d recommend reading it. In it, he spoke of growing up as a blind person in New Zealand, and having to overcome some pretty significant odds to achieve all that he has. We appreciate his willingness to contribute in this way.

Next, after a small break during which some ate fruits provided by the association, we listened to presentations on visual perception from Dr. Xin Ye and hearing loss research by Dr. Nathan Edge. Both of these were packed with information, much of it above my head unfortunately. I do know that Ye talked some about the origin of Norrie, in the NDP gene, how the retina works, which receptors facilitate connections that can lead to cell death, and a very detailed description of proteins that either enhance or inhibit gene expression. I think one of her group’s most important findings is that vascular and visual problems result largely from the disruption of a certain signal, and in some cases if that signal is restored during a small window of time, some functioning can be maintained. I do note that my interpretation of what she said could be very wrong, so if you are really interested, I’d recommend listening to her talk (Conference recordings to be posted soon, will link up).

Edge talks about much the same things, but as they are related to hearing loss. He notes that things such as antibiotics, aging, epigenetic factors, and other diseases lead to hearing loss. Along with the vascular issues caused by Norrie, the hearing cells in the cochlea can also be damaged by processes that are not yet entirely understood. He notes that possibly within four years, treatments could begin to be tested that may re-create the lost hair cells and thus restore natural hearing. Probably good reason for me to hold off on a cochlear implant if I can. How I long for natural hearing!

At this point, we are released for much-needed sustenance. I grab a boxed lunch of ham and cheese sandwich, a pear, chips, cookie, and sprite (because I want to try and wake back up), and she and I decide to hike over to the hotel room for a bit. I always need a bit of time to de-compress, so very much appreciate this. We scarf it down, and head back over for the next round.

At 12:30, we hear from Dr. Colburn on more hearing loss issues. He is the one with whom I spoke on Thursday, and so he leads off his talk by talking about the “social cocktail effect” we addressed at the party. His talk focused on how the two ears work together, especially based on how sounds travel different paths when going into either ear. Also, everyone’s ear shape is specific to the individual, which also effects how things are picked up in an environment. He continues with a detailed discussion about how neurons fire and respond to specific frequencies. He wraps back around to talk about the challenge of sorting through a conversation that is bouncing around everywhere, my number 1 social difficulty, and how it may be corrected by synchronizing the neurons again, an ability that we lose with increased hearing impairment.

The day’s final presentation was a panel consisting of myself, Rikki Chaplin, and Jonathan Mosen. The recording is such that it is difficult to make out what was said, but we mainly just answer questions from parents and other audience members regarding when we first became aware of blindness, socialization, sleep challenges, and issues involving dating and romance. If you would like me to go into further detail on any of these, let me know in comments. I think the panel was well received though, as it usually seems to be.

Then we break into our little groups, mine being men with Norrie. Along were the affore-mentioned panelists, my cousin Calvin, Jean, and a sixteen-year-old. The mother of an individual with intellectual disability, Maryann and Jamie, also chose to join us. We pretty much spend the entire time talking about living with hearing loss, not surprisingly. It is always nice to get in this real networking time.

And with that, the first full day of the conference concludes. My girlfriend and I make our way out of the building and into the pleasant warmth of Boston, stretching our muscles for the first time in eight hours. She has decided to have dinner at a small pizzeria called Felcaro, from which we will get pizzas at conference lunch the next day. The room has only about four tables for sitting, and only another couple is present as we eat. It is also sweltering inside, as is common for such establishments. We bother order cheeseburger subs, but only get a single order of fries to split. Given the size of the sandwiches, a foot long and packed with stuff, we could probably have split that as well. We enjoy consuming though as we chatter about our thoughts on the first day.

Back in the room, I stretch out on the bed and listen to sports as she makes phone calls. We stay this way until about 10 PM, at which time we finally call it a night.

I’m going to take on the no doubt monumental challenge of capturing some of what I experienced in my attendance of the Third International Norrie Conference. The Norrie Disease Association, a group over which I currently preside, has put on these conferences every three years starting in 2009, and thus far I have had the pleasure of going to all of them. Each time, I actually leave feeling like a big change has occurred in me, I guess because I see people with Norrie and those who work with us going places and working to understand better ways of managing this disorder with its varying modes of presentation. This year was no different.

Thu, 8/13

It is a rare privilege to be present for another’s “first”. Even cooler when that thing is something I love, and know a little about, or at least enough to hopefully reassure.

The plane pulls slowly out of its gate, and her grip on my hand increases incrementally as we crawl toward the runway. I feel the pulse of anticipation that passes through me like the kid I still am. She sits quietly beside me.

“What are you thinking?” I ask.

“I’m praying, actually!”

Fingers drum on the armrest as we make that final turn and throttle up to full power, then the amazingly smooth ascent into the 7 AM skies over Raleigh-Durham International Airport (RDU).

“Ah, that wasn’t too bad,” she says as the incredible view unfolds below. While I tell her of stuff that happens with the plane, she describes how that view from the left-side window seat appears. I enjoy asking all of my seatmates to do this, because everyone brings his or her unique take to it based on what they tend to notice.

The most interesting thing I learn is that the feeling of near motionlessness we get is mirrored in the visual sense as well.

“It looks like we could get out and walk faster than this,” she tells me as the buildings shrink to sticks, then only land and fairly large bodies of water can be made out. Well that, folks, is an experiment I don’t think I’ll be trying, at least not without the right equipment, whatever that is. I suppose that perception of slowness is a trick of the brain, so that it doesn’t drive us, and by extension itself, crazy.

According to the seatback screens, it takes us no time to drift over DC, Maryland, Delaware, New Jersey, and New York City. At some point, we make a quick jaunt out over the Atlantic.

Whoa! It looks kinda like we’re gonna crash into the ocean,” she says. I guess we have begun our initial descent at this point.

I don’t feel the landing gear engage, and neither do I note the bumpiness that usually accompanies final approach. I only know that we are about to touch down because she says so. This is my first flight with JetBlue Airways, and I wonder if the aircraft they use, Embraer 190’s, just tend to fly better than almost everything else. We only have about a minute of turbulence during the entire journey, definitely a deceptively smooth first-time flight.

Into the hustle and bustle of Boston Logan Airport, where we grab seats and try to ascertain the time at which my cousin and his wife will arrive. I can think of no good way to do this though, so eventually we just settle in and I listen to her people-watch. Families with four and five children in tow, infants strapped to bodies; carts piled with so much luggage that someone seems to be moving in. Fascinating stuff.

Finally the rest of our expected party arrives, and we schlep over to the US Airways Terminal to meet them. By this point, it is about 10:15. A minivan cab is summoned for the quick trip to the hotel.

This is my 3rd stay at our current location, known previously as the Holiday Inn but now converted to the Wyndham Boston Beacon Hill. The price hurts!, but relative to everything else I guess it isn’t too bad. I’m just opting not to check my bank account again till next year.

We deposit our stuff in our room, yay for early check-in, which I had called about a couple days before but was told I could not be guaranteed, and make our way over to the Whole Foods. She thinks she has seen a refrigerator in our room, and so opts to buy a few little groceries. Unfortunately on further inspection it actually turns out not to be one. I sit at a tiny table and scarf down a blueberry muffin, my first meal of the day.

Back downstairs we go for the Perkins tour, which is due to depart at 12:15. I’ve spent months nearly tearing my hair out trying to organize this, and so it is a relief to have finally come. We pile into a van that seats 12, boisterous conversation bouncing all around, and hit the bumpy road for the short journey to Watertown.

RELATED:
He Talks About Something He Loves
A Perkins blog article about their tour guide, in which I think we are featured in the photo.

The tour is great. We enter the Howe Building, named for the school’s original director whom I’ve talked about in reference to the fictional book on Laura Bridgman entitled What Is Visible. We learn that even the acoustics are thought out in such a way that they can help blind people use echolocation to determine information about their location. The floor slants down on entering, and also features lines and texture changes that can be used for wayfinding.

We are told of the school’s history, much of which I repeat as he states it, again having gotten it from the book. Some ask what the school is doing to assist deafblind individuals, and they state that their emphasis is more on children, but they can help people connect to places where assistance for adults can be had. The National Deafblind Equipment Distribution Program, (NDBEDP) the fine folks who helped me obtain my Braille Display, was mentioned.

Perkins also provides a wide array of service for mainstreamed blind children, including Orientation and Mobility, reading material, and instruction from Teachers of the Visually Impaired (TVI’s).

All of that is well and good, but without question my favorite part of the tour is the tactile museum. Here, they have animals that I’ve always wanted to feel such as bears, foxes, and a couple different kinds of avian species. I also explore a model Space Shuttle with attached rockets, another thing I’ve had a hard time imagining, and a few other gadgets. Once my girlfriend looked up from showing me some of these materials, we amusingly discover that we have been left! We quickly make our way through doors, up stairs, and find our group just as folks start to trickle back out to the van.

Next comes the social, back over at the hotel on its oddly numbered 15th floor. (I guess for superstitious reasons, they have no 13th floor.) The social is absolutely buzzing. It still amazes me how quickly our attendance numbers near doubled, a very good thing but one that had us pulling out all of the stops to get things together at the last minute.

The food offerings from the hotel were… interesting. A shrimp mango shooter, or at least I think that’s what they said it was. I just pluck the shrimp out and eat it. Some pretty god flaky pastries and bread with cheese, too.

We stay in this room for a couple hours, as first my cousin, who has hurt his finger with some weights such that he must have it constantly re-bandaged and take drowsy-inducing pain medications, shows up to the party from a quick nap. Then I speak with one of the next day’s speakers, Dr. Colburn, about the apt topic of trying to hear in such a noisy environment.

“Yeah, we talk about this all the time,” he says. “We call it the ‘Cocktail effect’, and I don’t mean the alcohol!”

He feels reasonably certain that technology can be improved in coming years that will make it much easier for us to cope in such circumstances. That would be a huge relief, I can tell you. As it is, I and my head are relieved when we depart. I enjoy mingling, of course, but it is very stressful.

We accompany my cousin and his wife to the same Mexican restaurant, Anna’s Taqueria, where things got a little crazy when they wouldn’t assist my cousin’s wife in helping the two of us in 2012. She figures it will be better this time now that I have my own guide, and of course it is.

And this pretty much constitutes day 1. I already find myself to be quite exhausted, calling it an unusually early night after I try to read some at 9 and most of it isn’t computing. It is, on the whole though, a satisfying day.

A quarter century. Always a big milestone when achieved, but especially when referencing a document who’s reach extends farter even than its original creators had intended. Happy 25 to the Americans With Disabilities Act!

RELATED: Twenty Years of the ADA

I thought it would be interesting if this time, I examine a bit of how education for and of blind folks has changed over the years, particularly by looking at the unique system of schools for the blind that have persisted since the 1800s or so.

Actually, according to a document outlining the history of Perkins School for the Blind in Massachusetts, the empatus for creating American schools for the blind began when a medical student named Dr. John Fisher traveled to France to see their school for the blind in the 1820’s. The idea really took off, thanks in large part to such successes as the deafblind Laura Bridgman, who’s fictionalized story I’ve recently noted, and Helen Keller.

Now, most states have at least one location that serves blind individuals, and much more the case these days, those with multiple disabilities. Here in North Carolina, we have the Governor Moorehead School for the Blind, which was established in 1845 as the eighth such institution, and the first to serve African American blind and deaf students.

Many of the older blind individuals I know attended such schools pretty much throughout their education, rooming in dorms and going home only once or twice a semester. They’ve told me that this experience had its good and bad sides.

Certainly a positive is the degree to which they could fully participate in extra-curricular activities. It was then and probably still is now easier for blind individuals to get involved in student council, play sports, and conduct other character-building in a more specialized setting than at a public school. Therefore, many of the people I know who have had such experiences are a little more socially developed than those of us who have not.

However, until recently at least, the academics in such places were not always on the same level as those one gets in a county school system. I think this has been remedied in a number of ways though, and particularly by allowing individuals who attended the school for the blind to take some classes at a nearby public school, as my cousins did. This meant that my cousins were able to attend a university once they graduated, because they had achieved all of the necessary academic standards.

Nowadays, thanks in large part to documents like the ADA, most blind children are mainstreamed. When I was a kid, there was still a need to largely centralize us so that we could all more easily access resources. This meant that if you lived closer to the city’s edge, as we did, your bus ride would be long. I find it hard to believe, but am fairly certain that it would take us 2 hours and 25 minutes to make the journey from our house to the school we attended near uptown (downtown) Charlotte. I’m not sure I would have the patience to do that these days, even in the era of smartphones that would allow for endless entertainment. I guess in those days, we would just entertain each other with jokes and actions that very likely drove the drivers nuts, if we were not in fact sleeping.

I think now that students can attend schools that are at least closer to their actual districts, which is a very good thing. The proliferation of laptops, iPads and the like have brought accessible learning to nearly every corner of a given city, but from what I hear the quality of instruction is perhaps not keeping up. I hope that going forward we continue to make a commitment to teach our blind and low vision students the techniques and give them the tools they need for success. I think this will require finding instructors who are truly passionate for the job, and also for those older blind folks who have gone through the system to be willing to go back and help our younger peers (yes, I’m talking mostly to myself here!) But as I sharpen my skills, I do plan to find some substantive way to give back.

Because I believe that someday we’ll see blind folk powering innovation, heading companies like Apple and Google, and perhaps running for President of the United States. We must continue to dream big, and hope that the ADA at 50 will have far surpassed anything we could imagine.

Today’s Tidbit

Well ok, it’s more like yesterday’s, but it relates to the ADA. The strip of restaurants we have over near my apartment complex seem to have been built specifically to comply with the ADA, I guess because they’re located so close to Duke University. This is a great thing, but it makes life, well, interesting for a blind person. All of the doors have long handles that are mounted in a straight up and down position. They also have a bit of carpeting just inside of the door, and seem to exhibit exactly the same acoustic characteristics.

This means inevitably, I must ask “Where am I?” when I manage to get someone’s attention. And in many cases, I have not entered my intended restaurant. This isn’t a problem really, as the cashier or some such individual will just tell me how many more doors to go down, but it does amuse me.

Actually though, I wonder what a person in a wheelchair makes of those restaurants? Yeah I suppose the doors are a bit easier to open, but most of the registers are located way towards the back. I know for me, this means a confusing navigation through tables and people, especially when the place is crowded. I think they just show the degree of challenge involved in creating a building that can successfully meet everyone’s needs. But this is definitely no reason to not keep trying!

For prudence’s sake, I have decided to break my book list of 2015 into two halves. So, I will first present the 25 I had completed by the end of June, then assuming I make the target, I’ll post my second half in January. Perhaps you’ll find something in this group that you like. Enjoy.

Observations:

So many books! I feel like for the first time in my life, I can just read all the time. Let’s check out some of the trends.

< p>First, I’m surprised that I’ve read so many science Fiction/Fantasy novels. Nine so far. I hadn’t generally thought of myself as all that into this particular genre, unless I can find a bit of realism in it. I have to feel that it connects to me somehow. Many of the authors in this category were located via Twitter. I especially like Veronica Scott, who features a blind character in her latest full work. This character, Sharira, isn’t as independent as we might think she should be, but it is also important to look at the society in which she resides. Scott writes a series of Science Fiction Romance titles that are generally grouped into The Sectors, a conglomeration of worlds that in many ways resemble Earth’s countries and cultures.

Speaking of blind folks, though, there have been a proliferation of us in literature lately. I’ve of course already talked about Anthony Doerr’s character Marie Laure, who did turn out to be a lot more functional and able to navigate society. Yeah the counting steps thing happened, but I guess some of us do use that method sometimes. I liked that she had a great career though, and just seemed competent overall.

I’ve made a deliberate effort to read as many books by women as by men, and I pretty much succeeded: 13 men and 12 women. Yay. I’m not as certain about minority representation, but I definitely consumed some books by African American authors.

Many have also examined slavery and all of its wrongs. Sue Monk Kidd’s, The Invention of Wings might seem especially relevant after the unfortunate mass shooting in Charleston, since she profiles that very church and Mr. Vessey’s attempts to start it.

And finally, the biggest boon to my ability to read so many books during one year has been the introduction of my Braille display. Even so, I’ve read 14 in audio and 11 in Braille. I guess it’s easier to take in the recorded medium in the workday. I think that imbalance will be corrected with time, though.

< p>So that’s the first half. I felt that I was getting off to a bad start for the second, but as long as I complete my current two titles I’ll be good for the month of July. We’ll see how things hold up as the summer travel season intensifies. Happy reading!

I wrote this sort of entry in my now-defunct Hearing Change, Seeing Promise blog, and it seemed to be quite popular. Also, I have many new readers and some who are asking about this very topic. So, let’s see if I can resurrect that same type of explanation to a degree that most find at least passable.

< p>“Blindisms” refer, at least colloquially, to a set of behaviors that are commonly seen in and expressed by blind folks, and especially children. Yes, the stereotypical ones: rocking back and forth in a chair that doesn’t actually rock, jumping and flapping arms, hands, and legs, and I guess to some extent not holding one’s head in the upright position. I think I may have had one that was peculiar only to me: a sort of interlocking of both sets of thumbs and forefingers that indicate extreme excitement.

Why do these occur? Well that’s just it; usually we are unable to get rid of that pinned-up energy in any other way, or at least in so far as we see it. Vision, a sense that, when present, takes up to 90% of perception, thus naturally helps individuals consume a good amount of energy. Not all, certainly, as adults who have been charged with wrangling sighted children can attest. They’ll still sometimes feel the need to run around, fuss at each other and said adults, and generally engage in annoying behaviors.

The difference is that in blind kids, we pretty much feel like bouncing all the time. We are also not privy to the social norms that would allow us to know that most kids are not, in fact, banging their knees together or spinning in circles.

I can still vividly remember my parents’ first attempts to rid me of this unseemly activity.

“Stop acting silly!” my biological father would often say, with little or no explanation of what “silly” meant. And, I’m gonna use a word that is now generally considered offensive, but it was acceptable then and thus part of my story. “You know what those white folk (a generic term used to refer to any sort of professionals) say. You supposed to be retarded. You ain’t retarded, so don’t act like it!”

This was and still is very hurtful, especially with no context to know what I was even doing to be so perceived. I can’t say that I really began to conceptualize what was meant, and to understand the extent to which I am observed by others on a regular basis, till near adulthood.

It therefore thrills me to have parents and teachers who regularly interact with such children working to ascertain what our experiences were like, and attempting to do better for the upcoming generation. So, I hope it is of some help for me to give some of my thoughts.

First, I think most of us will never entirely rid ourselves of these quirks. And neither should we have to! Sometimes, it just feels good to let things out in this odd way. Hopefully though, the child can eventually come to understand that it is usually wisest to wait until he or she is in a private setting, then ah to be let free to find whatever energetic center is desired. Hey, everyone has oddities, whether they can be outwardly observed or not.

Secondly, if you are going to try and correct a behavior, fine. But, try to ensure that the child understands the actions at which you are targeting your intervention. For instance, it might be helpful to say “John, remember what I told you about flapping your hands?”

Of course, to make these changes stick, it is best to incentivize alteration of, or redirect behaviors. I’m not an actual psychologist/counselor, though I did spend years of my life trying to become one. I think that what I learned during that foray suggests that the best way to possibly channel that energy is through sensory stimulation. This could be done simply by giving the child a toy to play with, probably one that engages many of the senses simultaneously. The individual with whom I spoke about this told me about a site called Wonder Baby which seems designed especially to help parents of blind children in this way. Cool stuff.

This is why I’m so glad to have the Internet in existence nowadays. It’s of course a lot easier to find relevant information, and thus just more likely that parents and others can make better choices regarding how to interact with the child. A thing I will give my parents, and one that probably explains their shortcomings, is that it’s an even greater challenge to intervene in a more positive way when you have five other screaming kids to take care of. I thought of this when in discussion with someone else. Not only did they have to contend with managing a large household, but also that of being among a lower socioeconomic status. So yeah, these things never happen in a vacuum. And even with all that, I didn’t turn out too badly in the end. So there’s hope!

Today’s Tidbit

I’m sitting at my reading spot, my patio table at Dunkin Donuts. Isn’t that where everything happens? I’ve wrapped up what was probably the best, if saddest, chapter of the book on Laura Bridgman’s life. Wow, her story definitely reads like fiction!

Anyway, I like to turn everything off and just take in my surroundings for approximately 15 minutes before packing everything up and going home. Technology is a beautiful thing, true, but I can agree that we’ve often let it saturate our lives with so much “noise” that we never fully relax and unwind.

As soon as the phone and Braille display have been stowed, I hear “Deet, deet, deet”. It seems that a few fire alarms of the businesses that flank that patio have gone off simultaneously. People begin to stream out, not panicking but just milling around and chattering. I know what’s about to happen though, sirens! Then likely a more difficult crossing, so I grudgingly begin my journey home right away. I do not know what actually happened down there, but hope that no building sustained significant damage.

Summer does something to the soul. It uncaps that need, that primal desire to get oneself out there and into nature! Full-time workers who must stay on for 12 months (Yes, I’m envious of you school teachers who only work 10) thus find it hard not to use all of their tiny allotment of days off.

What’s a man to do in order to tackle wanderlust while not risking termination due to absence? Well, to dream. To talk about all of the fun ways in which I can and do travel: by air, water, rail, and hard asphalt. So indulge me while I wax semi-poetic on journeys past and those hopefully to come.

AIR:

Ah, there’s something so freeing about rising above the earth’s surface, feeling that tug deep in your stomach as gravity says NO, but lift says YES! Up, up, to 39,000 feet. Ears lightly popping, while teeth work furiously to rebalance pressure before head explodes.

I remember my first trip up in a bird, across country from Charlotte to Los Angeles. I couldn’t fathom that we were actually moving at nearly 600 miles per hour, and yet for the most part I felt nothing. Amazing.

That kind of flight is great, and I still do and always will enjoy it. But in many respects one feels more connected to air and machine on a small Cessna, as I discovered during a fun summer camp session. Granted, I’m not sure I’d like going too entirely far in those things, because they tend to be notably more accident-prone than jets. Perhaps they are still less risky than driving, but I don’t know.

WATER

While I’ve never experienced it and am not sure to what degree you can, some of the first airplanes actually took off from the surface of the water. This was before long runways, and so it was the best way for them to have enough space to gather speed and rise. An awesome book to read if you’d like to know a bit of what that was like is Ken Follett’s Night Over Water.

Meanwhile, my knowledge of water travel largely consists of trips on speed boats, also at a summer camp. Bump bump over the craft’s self-generated waves. Whack of the loose life jacket strap in my face. And the craziest, a sky opening up that caused the counselors to insist that all of us screaming kids cram under what little shelter there was aboard so we wouldn’t drive her crazy as she tried to steer us back to docks. Fun times!

With regards to bigger boats, I’ve discovered that I may be a bit seasick when being tossed to and fro. I guess given the balance issues that my disorder can present, this shouldn’t be too surprising. The boat I rode just outside of North Carolina’s Inter-coastal Waterway was relatively small though, for an oceangoing vessel, and also I found that when below decks I could walk around without problems. This gives me hope of possibly being able to enjoy a cruise someday, but who knows. I think my first voyage will be a fairly short one, just to get a taste.

RAILS

And on the subject of short, but sometimes painfully slow voyages, I have, until perhaps now, regularly rumbled down the tracks as documented here. I think the connection between North Carolina’s two largest cities, Raleigh and Charlotte, is one of Amtrak’s best. Yet, especially the evening train coming down from New York is as far as I can tell, always at least 1 and a half hours late. It is no doubt slowed by the constant freight trains that intersect and bisect its route. I guess little can be done about this without disrupting commerce, though.

I often look at countries in Europe and Asia and wish our system could be as highly developed as theirs are. High-speed trains that give airplanes a run for their money, especially when security and weather considerations come into play. But I know that those countries are in many cases smaller or controlled by governments that have a lot more say about what gets built. I think though that there is a slow change in our own public that will soon allow for vast improvements in rail, and all kinds of public transportation.

I’ve had the pleasure of getting a taste of what trains were like before the modern era, at a historic depot located somewhere near Kanapolis North Carolina, if I’m remembering correctly called Spencer Shops? We rode an old, rickety train with no onboard venelation on a really cold day. I think they also have a pretty cool museum at the depot. It was a fascinating experience.

HIGHWAY

And finally, there’s the good ole, open road. Always a legend in America’s car-centric culture, though as I’ve just pointed out this is starting to alter with the younger of us.

I guess the biggest plus this mode of travel holds for most, though of course a lot less so for those of us without working eyes, is its high degree of freedom and control. No timetables or long lines to worry about.

But then that’s not entirely true, is it. Yeah, try driving somewhere before one of the major holidays, and see what kind of traffic you get entangled in. Not to mention the things you can’t control, like drunk drivers who sadly so often take others’ lives while being spared themselves. (NOTE: I mean to say not that I wish they, drunk drivers, die, but that no one would!)

p>I think this, especially generally featureless Interstate highway travel, is my least favorite. My longest journey of this kind was aboard a chartered bus to New York City: 14 hours of jolly rancher-induced sleep-wake that found me still somewhat functional on arrival in White Plains (A NYC suburb), but toasted by nightfall. Ah, that was some trip.

IN CLOSING

So, now that I’m thinking about travel, I want you to as well. What are your favorite modes of transportation? Any crazy experiences, other than what I know probably occur regularly in city driving. Do you like flying or fear it? Ever been on a cruise? A long train trip, as Katie Aune has, a traveler I follow on Twitter? I would like to do that one day. Talk to me.

Today’s Tidbit

I’ve been temporarily relocated to another section at my job. Yesterday, I got hopelessly lost as I wandered the rails, searching for the door out. Those rails are in fact like a highway, because they extend the length of the building, and have little “exits” that lead to different halls. All of the exits on I-Twenty-Blind as I call it (get it? 20 is the first number you often see on charts referring to someone’s sight levels) feel the same. Well only one has different texture, the one leading towards the main aisle. I wonder if anyone thought of that? I mean, imagine trying to figure out where to get off without proper guidance from the signs? A good Samaritan did finally save me from the side of the “road” just in the nick of time, for I stepped onto the bus just as the stairs were lifted and it pulled off. Just a little jobs humor for ya. More next time!

Happy Fourth of July to all of my US readers! And folks outside of this country are certainly welcome to celebrate with us as well, if you wish. Little to no excuse is needed for a party, right?

By its very nature, this day always makes me think of and assess my own state of dependence/independence. Interdependence is truly what it is, for no man or woman functions entirely separate from all others. I think this has already been a banner year for me in that regard, though.

I so often feel fortunate to live in the era that I do. I’m reading a fictionalized account of the esteemed Laura Bridgman, called What is Visible, by Kimberly Elkins. Bridgman attended Perkins School for the Blind (then it was known as Institute) in the mid 1800’s. As you probably know, she was both deaf and blind, as well as lacking a sense of smell and taste.

The story paints a rather harrowing picture of her life, from the degree to which her destiny was controlled by others to the longing and loneliness she often felt. I hope for her sake that much of the events that were portrayed were a bit overdramatized, but who knows.

She and her blind cohorts rarely had chance to leave that facility, spending much of their time attending exhibitions to be shown off to other dignitaries, and receiving what little education was available to them. Braille was just coming onto the scene in Europe, but instructors at the Perkins Institute, most notably its director Samuel Gridley Howe, known as “Doctor” to most, did not accept this as a learning tool. Rather, they had to read things produced in raised print, which I suppose is doable but probably quite cumbersome.

As stated though, the thing I would have found the most challenging would be not being able to move around much on my own. As I discovered when writing for White Cane day, blind folks didn’t even start to gain this ability till the early 30’s. And even then, I doubt they were doing a whole lot of wandering.

Me? I’m kind of crazy! Especially with the advent of GPS and ability to key in an address and learn tons about it before attempting to venture out, I’m likely to just take off and go to somewhere even unfamiliar. The main questions I have to cope with are: what does the bus stop look like? Will I have to cross any busy streets? How likely is the weather to hold up for me? The street crossing issue is still and will likely always be my biggest impediment, but I’m hoping that tech will soon at least mitigate that someday. I wouldn’t put myself among the most savvy blind navigators, but maybe I’m a bit above average, at least. My underperforming hearing will continue to present its own challenges.

With regards to the connectedness/loneliness thing, I think this is the biggest reason I am glad to be among “normal” society. Even dragging myself to and from this job helps me to remain part of my community and not just sit in this apartment passing time. Additionally, I think I spend so much time getting coffee at Dunkin Donuts that I may have caused them to lower the price of that beverage during “Happy Hour,” which I’d guess is from 4-7. Finally, I am happy to have someone who enjoys walking this road with me, who helps me and whom I try to help.

So, those are just some of my disjointed thoughts on this day in which this country celebrates its often not lived up to ideals. I suppose it’s always an effort though, and one worth continuing; to strive for the betterment of self, neighbors, and humanity in general. Now enjoy the fireworks, safely! And apologize to your poor doggies, as they no doubt dread this day.

Today’s Tidbit

Why can’t someone enact a law against leaving loud truck engines idle in excess of five minutes! This happened while I was out today, and after standing there for nearly 15, I finally had to chance it and cross. Luckily, things weren’t too terribly busy. It does annoy me, though.

Whether the weather is cold
or whether the weather is hot
The weather the weather whatever the weather,
Whether we like it or not.

Did you ever sing that silly song? We used to warm up with it in my high school chorus. That and one that went “Scotland’s burning Scotland’s burning, look out look out, fire! fire! fire! fire, Pour in water pour in water.”

Once, as we belted that out, the school’s alarm happened to go off. So as we made for the door, we started saying “Pinecrest burning Pinecrest burning…” It was amusing only because of course we were just having a drill.

Anyway, onto the substance of my post: our finicky summer weather. I think maybe this week our prognosticating forecasters may have gotten it more wrong than I can recall seeing. If you’d checked on Monday, they were saying the 4th of July period was to feature temperatures in the upper 90s. Now? We’re barely breaking 80. I guess I can’t take too much issue with that though, as it certainly makes sitting outdoors more tenable.

I think it’s part law of averages. After something like 16 days of 90s, a stretch not recorded since the early 50s, it had to cool down some.

But the other side of it is the return of moisture. Ah, rain! Yes I know we need it, otherwise we’d shrivel up like grass in Winter. And it feeds me and gives me drink and yadda yadda yadda.

Trying to maneuver through it, or plan around it, puts me in knots though! It keeps sneaking up this summer and ruining my fun.

Most notably, last weekend. My girlfriend and I hung out with my cousin and his wife in Charlotte on a sort of double date weekend, our second such get-together. First, I suppose I should just be glad I didn’t come down with another yucky cold, as had happened on the first go-round.

On Saturday, after having already survived a wet Friday night return from retrieving me at the train station “Maybe it’s getting all that stuff out of the system now!” we initially went clothes shopping at Concord Mills Mall, just outside of the Queen City. Oddly, it is, or at least was, the number 1 tourist attraction in North Carolina. I guess people like to shop, though certainly the Internet is taking a bite out of the brick and mortar infrastructure. This happened early in the afternoon, and with her help, I managed to get a couple of nice looking outfits for this upcoming conference without breaking the bank.

4:00, we got back on the road and decided to give Carowinds, the area’s amusement park, a shot. It’s all the way across town, straddling the line between North and South Carolina, and as we approached the weather steadily turned worse.

“Do we get a discount?” Yes, all four of us, totaling about $16 a head. Nice.

Also, they’ve implemented a system wherein we, I guess people with disabilities though I don’t know how wide-ranging a group is covered, don’t have to physically stand in line for a ride, but we must still board in such time that we have basically waited. You have to approach the boarding area and sign up for the first available time, which could be hours away. Our first choice required a two-hour wait. This was ok though, because it could still allow us to maximize our time there by making it so we could just jump onto rides with shorter lines while awaiting our go on the more peopled ones.

“Now you know what’s gonna happen as soon as we get in here,” I leaned in and whispered to her. “It’s gonna pour down!”

Hey, I didn’t do anything! It was pretty obviously going to occur. Our hope was that maybe we could wait it out. So my cousin and I went into a souvenir shop and got panchos that were little more than glorified plastic bags. They did have all-important hoods to keep our hearing aids dry.

In line for the intimidator, the ride named for NASCAR’s Dale Earnheart, already fairly close to the stairs going up to the ride actually. DRIP. “I’ma wipe that away real quick because it was actually just my imagination!” I thought to myself. DRIP DRIP. No no NO NO NO! Then, out came the plug from the sky.

A mad scramble through the bag where she’d placed it, and a quick dance to wrangle the pancho over my head, first through the buttoned sleeves then more correctly with the hood oriented as it needed to be. And all who were left squeezed into the small amount of shelter along the rails and hoped.

“Ah ok, the sky is clearing,” she said. “And, now it’s slowing down.”

To the top of the stairs, we were then stymied by the operator’s inability to re-open the ride until he’d received the proper clearance. C’mon come! on! I wanna at least ride one coaster! iPhone out to check likely conditions “Severe Thunderstorms, chance of rain 66%. *sigh*

And sure enough, an impenetrable wall of grey soon began approaching and the skies recommenced their works. This drove most everyone, including us, to the exits. WAH! Ah well, we gave it the ole try. And I guess that dough at least bought me a crazy story.

So yeah rain, leave me alone! I’ve actually been remarkably fortunate most times though, somehow just missing dangerous thunderstorms. But needless to say that even one spout can make life challenging when trying to cross the street and the like. I guess it comes with the territory in our summers, so I’ll just have to suck it up, and try to stay dry.

Yeah yeah, I know what you’re gonna say.

You said you were gonna do this last time!”

And you’d be right, except this time I’m taking concrete steps to begin designing my path out of sheltered employment and into that as a writer/social media person/advocate/doer of good. I’m going to make one of the strongest declarative statements I ever have, and say that it’s now my time! If you know me, you know how hard it is to not write words like “hope,” “think,” “try,” and other such modifiers. But right now, I just don’t have a choice.

So what does that mean in practical terms? Well for one, it should mean I will no longer be blowing the dust off of these computer keys, as I literally am now. Goodness, I’m surprised this system is still working.

And, as I’ve said before, it probably means that not every work will be worthy of publication in the New Yorker or magazines of its ilk. Well ok let’s be honest, most won’t be on that level. But I will never even approximate such ability without rigorous practice and the willingness to come up a bit short sometimes.

This week has been speckled with inspiration that I have gleaned largely from previous connections I made during my time at UNC’s grad school. These meetings have both occurred after the long work hours had concluded, which made them hard to go through with, but I feel I need to get that momentum going and keep with it, even if I suffer temporary sleep deprivation as a result.

Yesterday, I spoke with Dr. Daniel Wallace in a large academic building on the UNC campus. This chat had been facilitated by another professor who works mostly in the hospital, but who has decided that she wants to help me succeed in any way she can. I can sense how serious she is about that, and that drive is rubbing off on me.

Anyway, Wallace, a well-known writer, told me that the most important thing I can do for myself is to sit down and do what I am now; cordon off at least 15 minutes to whack out some words. I can’t promise that I will write every every day, because well, life is crazy. But I am gonna get a heck of a lot closer. I guess I have to just try to draw topics from my day and its inherent chaos.

He and the med professor suggested that one of the things I might most likely be able to do is to work with a hospital to educate others about my particular experience with disability and rare disease. So I took their ideas to today’s meeting with the good folks at the Community Empowerment Fund (CEF). I’ve talked about this organization before, as they were instrumental in helping me both to move out of my place in Carrboro and into my current apartment here in Durham. I have a lot of respect for the people who work primarily for homeless individuals in this org, but really for the good of the community at large, as they are mostly no doubt busy college students. Maybe if I’d shown that level of ingenuity while in undergrad, my lot now would have been better. I know though that I can’t change the past, can only work to improve likely future outcomes.

The young Duke student with whom I worked today helped me to find the links I needed to both Duke and UNC Hospitals, and I am thus tasked to dig through that info and locate the individuals who might be best able to provide me with ways to move forward from here. We shall see.

Today’s Tidbit

An idea I just came up with is I can end most entries with some new discovery/occurrence of each day that I do in fact write about. Probably not too surprisingly, given that I’m as much a sheep as everyone else, I’ve been playing around with the new Apple Music. I was enjoying tracks in the “New” section, and on the “Radio” stations, especially Beats One. But I finally worked out that the real fun is in searching for artists. I’m currently listening to Alicia Keys’ whole album “Elements of Freedom”. If you’ve known me for a long time, you know she used to be my wife! But alas, she’s chosen some other guy and laid down her own family. It’s all good though!

Looks like they don’t have her very first album, the one I really wanna hear, but they have most of the other stuff. This already beats Pandora, and if I could go ahead and pay I would. Yes, I know that musicians do still need to get some dough for what they do. Maybe they could take their cue from insurance, and charge a higher “premium” to those who listen to more albums. Ha.

I’m not sure what tomorrow will serve up for me to gorge on, but I guess that’ll be the fun of this process. Till then.

Ok, pardon me while I continue to experiment with writing entries on the iPhone. My last attempt didn’t go as well as I would have liked, because I couldn’t and still can’t get the HTML to look right. We’ll see if this goes better.

Anyway, today’s post is to be about my experiences with the car sharing service Uber, with which I have navigated Durham for almost a year now. Actually, according to the stats they emailed me when celebrating having been in the Triangle for an entire year, I’ve used these folks 62 times. Sixty-four now, as a href=”http://www.blindtravel.net/follow-up-my-first-uber-experience/” target=”_blank”>first trip with them, I went today to have my hearing aids repaired. (My trip to Charlotte was brought to a screeching halt by the right side’s clogging yesterday, not fun&) I was therefore forced to take a day off of work and schedule a last-minute appointment. Maybe someday I’ll master the skill of acting more preventatively, but in my defense this time I didn’t notice that I was losing hearing till too late.

Given the similar reasons for going, I thought it would be fun to compare and contrast those experiences. So, here we go.

It took me a while to force myself from the cover’s comfort and start the day. Once I did though, I took a relatively short shower because it was so hot out. It didn’t take long for that steam to become dangerous. It was 11:15 at this point, and after an hour of goofing around on Facebook I decided I needed to get going.

There are a few things I’ve noticed as Uber has matured in this area. The first is that they’re a lot more likely to go into surge pricing during mid day than they had been before. This means that fares can increase by up to three times, in order to get drivers on the road. I have to say though that their regular fare is now so low that I’ll likely still book at even twice the rate.

On initial launch of the app, after being told there were no cars available, it went into surge mode. Then, some began to arrive once the higher prices were activated. Fortunately for me, by the time I’d tried using Lyft, a competitor app that does the same thing, (also unsuccessful), I found that the surge had ended. A ride was available in five minutes.

A kind female driver, undergrad at one of the local universities, came to get me. That’s the other thing I’ve noticed about Uber: far more women seem to drive for them than for traditional taxis. She said it was only her second week, and she only does it when time can be taken from summer class. She did a good job getting me to my destination, huge potholes and long traffic lights notwithstanding, such that I had 45 minutes to kill before my 2:00. I spent this time working on my 25th book of the year, halfway through my 50 book 50 author challenge of 2015!

The usual audiologist who sees me calls me back. The first thing she wants is to have a look in my ears. Uh-oh!

“Now you know what I always say to you about this whenever I see you,” she says.

Ah, of course; I need to get that impacted wax cleaned! Only, any mention of this traumatizes me due to an attempt at UNC Hospital that didn’t go well.

After servicing the aids for me, she called said hospital to inquire about possibly having me sedated before giving it another go. Turns out that they will only sedate if it’s part of another procedure.

So, she offers to try cleaning the ears herself, breaking into different sessions if necessary. Once she gets started though, I find the process to be relatively painless, which allows her to complete work on both ears in meer minutes.

“Wow,” she says, “I can see your eardrums for the first time since I’ve known you.”

On wrapping up all the administrative niceties, including the pretty penny I had to pass on, (worth it for reliable, sensitive, last minute service), I am ready to call my return Uber ride. Thinking from the perspective of one who is totally blind and profoundly deaf, I wanted to see if I could summon a vehicle using only my Braille display. Certain onscreen components that defy my technological terminology to explain them made this task nearly impossible for me. My hope is if such individuals are using Uber, they have worked out effective means of interacting with it.

A neat feature that I did notice for the first time as I headed home, but that I know may already have been there, is an ETA to your destination right in the app. This could be quite helpful indeed.

So on the whole, I’ve loved Uber. It works well for me as a good complement to the city and regional buses, as when I needed to take a 1.5 hour bus trip to the Apple Store and opted to do this one-way, and shell out for a fifteen-minute car ride going the other direction. I haven’t heard in a while, but was disheartened by this company’s disregard for people with disabilities and unwillingness to work to stamp out discrimination in response to a suit brought by blind guide dog users who had been denied access. I sincerely hope that they will reconsider their stated position, and will take my business elsewhere if they don’t. I think that on balance, this kind of innovation has done and will continue to do us a world of good.