“The Sign for Home” Examines Life and Challenges for a DeafBlind Individual

Recent high-profile cases have shone a spotlight on issues regarding disability and independence. To what degree should one make decisions about one’s life, even if not fully able to perceive the world in what is deemed a “normal” way. Should family be able to basically dictate how a person is to live, simply because they believe they are protecting the individual from harm, thus possibly denying access to choices that other adults expect to have?
In his debut novel The Sign for Home, Blair Fell addresses this issue in a novel way. First, we have Arlo, a DeafBlind individual who resides with his devout Jehovah’s Witness uncle and receives information via a Tactile American Sign Language (TSL) interpreter who professes to believe the same. Arlo, wishing to explore possibilities in writing, enrolls in a class at a Poughkeepsie (NY) community college where he meets Cyril, another interpreter who accidentally or on purpose opens Arlo to a whole new world.
This writing class, taught by an unusual professor from St. Kitts, leads Arlo to explore parts of his past that he had been forced to shut away because his uncle deemed them sinful. These included an encounter with a deaf girl while he attended the School for the Deaf that led to his being sent to live with said uncle in the first place.
As the story unfolds, we learn that things with this girl are not as they seem. Arlo had been told one story about “the event” that ultimately ended their blossoming love affair, but… well as it turns out everyone has their secrets and lies. As the truth is revealed and Cyril and his associated cast of characters make Arlo more aware of possibilities regarding independence, he begins to push back against his uncle and Molly, the initial interpreter. This eventually leads to his seeking total freedom from his uncle’s guardianship.
Arlo and Cyril are primarily featured, with Arlo’s perspective being second person present and Cyril’s first person past. Both of these methods allow the reader to connect deeply with what is going on, offering a different set of feelings based on each. The former seems designed to ensure that one feels the experience of DeafBlindness and coping with a world neither heard nor seen insomuch as one can truly experience this, while the latter aims to allow access to the complicated emotions involved in helping Arlo deal with change.
At points during this novel, I as a DeafBlind person worried that the portrayal of Arlo made life for those living with these disabilities seem too simplistic and/or sad. Arlo knew little about how to operate in society when it came to moving around by himself and being willing to explore the wider world. The first part of this of course is that for some individuals who are DeafBlind, just as for those with other challenges, this is a true outcome. If one is not exposed to people and services such as Orientation and Mobility and Vocational Rehabilitation that are designed to help a person with a disability learn what is needed to thrive, one might indeed have a hard time. Even so, I appreciated that Fell included people who were functionally independent and who knew enough to teach Arlo, Cyril, and all in their circle some basic strategies to make his life easier. It is realistic, after all, to show that one might struggle with life as a DeafBlind person, but I believe it is equally if not more important to show that life can still be lived well with this or whatever condition one finds oneself.

#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.

Follow-Up: My First Uber Experience

Ah, so I was quite fortunate and got my real hearing aid back sooner than I’d thought would happen. The call came in at around 11:20, just as my head began inching inexorably toward that sharp cutout that holds my light stick box as I fill it.

And fill them I was! I had to work quickly and keep thinking about any and everything in order to keep the brain working. And the harder I worked, the more aggressively they pumped material into the bins.

Anyway, at lunch time I knew I’d need to place a call to my supervisor and tell him I’d be exiting at 1 PM in order to retrieve the aids. Then, I made my way down that long, narrow corridor with its unusually textured floors to the front of the building.

In the receptionist’s office, I pulled out my iPhone to attempt summoning the ride via the Uber app. I hadn’t known how it would go, but I actually found it pretty cool. The app uses your GPS to give an approximate address, which you can either confirm or alter to read the actual address. I should have done the latter, but in the end it didn’t end up making much difference.

You can also get it to calculate your approximate fare. It said mine would be $16. Nice.

Once a driver is requested and confirmed, it gives you the driver’s name, license plate number, and make of automible, as well as an estimated time of arrival. I found that last to be the best part, for sure. Once it went to 0, the app sent a notification and the driver called to make sure he knew where I was. After a few seconds of sorting, he managed to find me. Oh, and because he didn’t know initially that I was blind, he’d just sat there for about two minutes before I tried calling his cell.

The vehicle was comfortable, and it felt and smelled up to standards. This guy was from Ethiopia, enjoying to talk about where I’d come from, what kind of schooling I’d had and the like. He said one of his favorite things about the US is that we get greater choice in which types of things we’ll study in school, whereas over there, according to him, the government dictates which topics you must learn about. “I don’t understand why more people don’t fully take advantage of this!” he said.

He located the building easily enough, and I hopped out and went inside. I launched the app, and it said I had been charged $21.45. That’s odd, as from what I’d understood, my first five rides were to be free. It isn’t a big deal though, as that is still cheaper than the amount a cab would usually cost. I also loved the convenience of the whole thing.

The return ride was also provided by a foreign person. I am uncertain from where he may have come, as he said little the entire way other than asking where I was going. He already knew where my apartment complex was and so I got home quickly and easily, also in a comfortable van. They didn’t in fact bill for this ride, which was nice.

So on the whole, I’d have to say I liked the service. It takes away a lot of the anxiety, again for me as a blind traveler, regarding when they might arrive and if I’ll miss them. I’ll have to use it a few more times to see if there’s always a noticeable difference between the quoted fare and what they actually charge, but even so I still liked not having to engage in any cash transactions. Finally, I appreciated that the app asks you to leave feedback on each trip you take. I suppose this could be used to weed out any bad actors, should there be any.

And those are some of my thoughts. Kudos to whomever came up with this idea. It is yet one more way that I can reap some major benefits from my third hand, the iPhone. And it is a potentially powerful tool to enhance independence, and decrease the need for me to try frantically to find drivers when I need to get somewhere quickly. I hope it continues to be successful.

Travel By Leg: on my mobility abilities

This post inspired by Adventures in Low Vision, a blog about the different challenges and happenings its author encounters as she adjusts to low vision life. She writes snippets that I always enjoy, as they turn visual images into words.

In her most recent post, she asked the question “What do we as blind or low vision people do to ensure safe travel.”

In my now defunct blog, I had written about a series of techniques lumped into the general category called Orientation and Mobility that are designed to help blind people learn to navigate their environment. These most commonly include crossing the street safely moving around in large spaces such as malls and department stores, and using public transportation.

When many think of Orientation and Mobility, (O&M) they think of learning routes to specific places. Yes this happens, but if one only knew how to get from one particular place to another I don’t think one would be able to adapt well to new settings. I am happy to say that my instructors, probably some of the best there ever have been taught me methods that allow me to figure out where I am even when I locate to another area.

I never heard them use this exact term, but I believe the ability to put together bits of information to figure out different surroundings is called Structured Discovery. I sometimes do this by walking with a sighted person a couple of times and paying really close attention to turns, cracks in the sidewalk, street gutters, the sound of ventelation units, etc that help me memorize the layout. I would venture to say that suddenly I’ve gotten pretty good at this, and especially living in my sprawling Durham neighborhood with its restaurants, convenience stores, and leasing office a quarter mile away. I’ve also had to use this in the place where I work, as they often rope off familiar hallways without warning and I am forced to readjust.

The only thing that does concern me is the degree to which I rely on my rather shaky hearing in order to safely move about. I had lost this ability near totally with the lower quality hearing aids I’d had from January of 2006 till February of 2011, as they didn’t provide a high enough degree of stereophonic sound. By this, I mean the ability for both of my ears to work together to create a unified soundscape that makes it clearer when, say, cars are passing in front of me as opposed to going by on a parallel. This is vitally important when crossing streets.

Not that I’m entirely perfect even at that yet, unfortunately, but I think I do well enough to stay in one piece. I always press the button, waiting until I’ve heard an automobile pass in front of me before so doing to try and get myself as close to the beginning of the next light cycle as possible. It’s fun being me sometimes.

You might think it odd, but I believe the most dangerous part of the travel I do is actually crossing open parking lots. Here, if a car is moving it is usually doing so slowly. While I wouldn’t be hit particularly hard, hopefully, I also can barely hear the engine when there is little speed involved. I have lost a couple of canes this way, though as others point out in those situations, at least said canes did their job and kept my toes in tact.

To try and head that off, I’ll usually stand on the curb and, in a technique taught to me by my O&M instructors, wave my cane three times across my body to hopefully let anyone know that I’m about to step off. Then it’s just a matter of holding head high, trying to make sure I can be seen, and crossing fingers!

And on pressing buttons, or pulling cords, riding the bus is also usually an adventure. I’ve very much improved that over the year plus that I’ve been here as well, finally actually learning where the cords even are and thus how to properly use them.

And even though the ADA mandates it, not all stops are called out on most of the routes with which I interact on a regular basis. This is less of a concern for me lately though, as I can use my iPhone’s GPS apps to help me get a sense of where my exact stop is. I do this for the first several times I need to get to a different destination, until I get all of the turns, speed bumps, traffic lights and the like down so that I can ride without that assistance. I of course also tell the drivers where I wish to get off, but being human they are prone to forget and sail right on by if I don’t ring that ell in time.

As I stated earlier, I’m kind of afraid that my travel abilities may continue to deteriorate. I’ll probably never be able to really move around malls and such, unless perhaps I go ahead and get a guide dog. As far as that goes, I do feel I might be better with a dog than I’d thought as my basic mobility principles are solid. But if I have to get a cochlear implant, I’m raeding that others who are blind have lost some of that ability to track themselves in relation to other objects. That might render me unable to function, but I guess I have to hope not. Maybe it can be reacquired with time.

Thanks again to Adventurous in Low Vision for this post idea.

On Disability and Connection

I’ve been pondering this topic for a while, as I seem to have unending challenges in maximizing or at least maintaining my links to others. At its root, connection is the basis of our humanity. We all want to belong to an organization, form solid romantic and/or friendship relationships, and ensure that our family bonds are strong.

I guess whether we like it or not, we tend often to be defined by what we do. What kind of job/occupation/career do we have?

I suppose not only persons with disabilities but many have a hard time associating with the individuals who might help them get to the place where they would like to be. However, I can say from my own experience and that of some of my friends that those of us with disabilities may grow up never really learning how to accentuate networks, and thus we find it harder to obtain meaningful employment, if any at all.

Fortunately, I think that modern technology is leveling that playing field for kids of this generation. I can’t imagine how different my trajectory would have been if I had Facebook, an iPhone and the like during my formative years.

What this tech is doing for career possibilities, I’m not sure it can do for interpersonal connections. In my experience, there is a bit of a rock-in-a-hard-place thing that happens, and particularly for individuals with clearly visible disabilities.

I have learned my way around almost my entire half-mile neighborhood area, from the leasing office on one end to the restaurant strip containing Dunkin Donuts, Noodles and Company, and other establishments called, I think Pavillion East. It’s a very pleasant spot, especially when the sun is shining and I can grab a coffee and a sandwich and take a seat on the patio.

Anyway, so I might be cruising along thinking to myself and mapping where I am and wish to be.

“Hi sir,” I hear someone say. “May I help you?”

Often, I say no as I don’t actually need assistance at that moment. “But hey, I would like to chat if you’re interested.”

My experience is that people rarely are interested, unless they feel they can fulfill that apparent need. Because of this, I have had relatively few friends without disabilities. More than that even, I’m finding that increasing independence can often lead to increases in isolation, as people have fewer obvious reasons to interact with me. It kind of makes me think of what others have said to me, that we are so often seen only as our disability, and not as a whole person potentially full of interesting traits and yes even character flaws.

I guess the people who are most likely to see us as whole are of course our families. Even as much as they do know though, I have found that many even in my own family are surprised by some of the crazy stuff I enjoy doing.

Actually, I feel fortunate to have the folks around that I do. One problem that is common among folks with disabilities, causing us to sometimes feel a strong urge to act recklessly just to establish our own identity, is that our well-meaning families can be a bit overprotective. I know some, for instance, who have been practically forced to live at home into their 30s, because their parents feared imminent harm if they were unable to track their every move. This sort of thing makes me sad, and I guess I’m just hoping that things continue to improve for all of us as time marches on.

So those are some of my thoughts regarding how persons with disability connect and fit in among society. I suppose things aren’t actually as tough as they could be and have been in the past. I will continue to do my part in helping us all to make gains and understand each other just that little bit more.