Looking at Ebooks & Accessibility With 20/20 Vision in 2020

One definition of legal blindness is having a visual acuity that is best corrected to only 20/200. That means that even wearing glasses, a person can see no better than 20/200 using the standard eye chart. It also means that a person who is legally blind may walk around without a white cane or guide dog, but nonetheless cannot read standard-size  print. According to the CDC, more than 3.4 million (3%) Americans aged 40 years and older are either legally blind or low-vision, and in many of these cases, reading traditional physical books with their eyes is no longer an option.

“My mother/father/uncle/aunt is legally blind , and they’re depressed because they can’t read anymore,” is possibly the most common thing random strangers say to me. Because I’m blind, they want advice, sometimes, but most often they want me to commiserate somehow. They want me to tell them how horrible life is for their loved one now, but I won’t do that because I have technology, and technology has been pretty great for blind people.

In particular, book accessibility is just incredible compared to what it used to be. Braille, since it’s invention in 1829 by Louis Braille, was revolutionary, allowing blind people to read and write for the first time in history. However, producing braille has always been very expensive. I lost the ability to read print in the mid-eighties when I was about 15, and although I tried to learn braille, I was deterred by the dearth of books available in braille.

Enter the electronic braille display. It’s a nifty device that can be connected to your computer or smart phone by wire or wirelessly using Blu Tooth, and translates electronic text into braille—usually twenty or forty cells of refreshable braille that you can scroll through and read with your fingers as the little pins pop up and down in the correct configurations. Suddenly, now that pretty much every book published is available as an ebook (without the hyphen please, like email), I can read the latest release just as soon as my sighted companions. So yes, the much reviled ebook is accessible to blind readers. And unlike the adored audiobook, the ebook is also accessible to deafblind people, such as author Haben Girma, whose 2019 memoire describes how electronic braille helped her not only finish her Harvard law degree but also to communicate with fellow students in noisy social situations.

For many years, I relied on books on tape from non-profit and government organizations. There were so many reasons to be grateful for these audiobooks as they granted me access to school textbooks and for-fun novels. However, audiobooks take a lot of time and money to produce, even when they are relying on volunteer readers. The books on tape of my high-school, college and graduate-school years were not the slick productions that are so easily downloaded today. They were indifferently listenable and slow to arrive. They came by mail in unsexy plastic blue boxes, and  oftentimes I had to wait months, years,  or forever to get ahold of a book that my sighted friends were reading and talking about.

Before braille and audiobooks, there was the wonderful technology of spectacles—invented in Italy around the 13th century. Judging from the fact that all my newly middle-aged sighted friends suddenly need reading glasses, I’m guessing there were a lot of ancient and medieval scholars crying over their inaccessible books.

Thus, it is confusing to me why people—particularly older people are so mistrustful of technology. Technology has always allowed us to extend our working life beyond the years nature (and genetics) intended. Ebooks are a perfect example of how technology can be immensely helpful and yet widely despised.

I am on many bookish email lists (such as NY Times Books Briefing), which I read using my text-to-speech software on my computer or iPhone. The joy I feel at being able to gain immediate access to  items on, say, “The 10 Best Books of 2019” is immeasurable. Before the ubiquity of ebooks, It simply was not possible for me to be so current with books without hiring a legion of personal readers.

I’m still working on my braille skills with my relatively new (and very expensive) display. But now that the books are available I can work on it daily. I recently finished Patti Smith’s 2019  dreamscaped memoir, Year of the Monkey, mostly using my braille display, but switched to my ears (using text-to-speech) when my newbie fingers got numb or when I was eating.

This leads me to an important point regarding the much-maligned ebook: a visually impaired reader can enlarge the print and read with their eyes; a blind reader who does not know braille can listen using text-to-speech software; and a braille reader can use their fingers  with a braille display.

I am not saying that ebooks should displace physical books with their wonderful smell and heft. I dream of having a braille book library of my own someday!  I also dream of owning my own house with a room big enough to house it. But until that wonderful day when I have lots of money and square footage, I am thankful to have access to electronic books. In fact, I would argue that the “cheerleaders” for ebooks a few years back who urged a complete switch from ink and paper to digital hurt my predicament as a reader who relies on digital, by assuming that all readers would love to hold their entire library in one hand.

This idea has understandably suffered a backlash. From this angry Guardian opinion piece railing against the techno-dazzled, to Bill Henderson’s refusal to publish his influential Pushcart Anthology digitally, to ebook-hating authors such as Jonathan Franzen, physical book fetishizers deny the validity and even the reality of digital books as if the printed letters were the thing and not the content and ideas the letters point to.

I am here to say that for me and millions of other print-blind readers, physical print books do not exist as anything more real than a doorstop, while digital books are real, readable books. If you don’t believe me, just pull an Oedipus–poke out your eyeballs–and tell me about the reality of your impressive print-and-ink library.

Book lovers come with all kinds of abilities and disabilities, all kinds of resources and lack thereof. We do not all have rooms for shelves and shelves of books or live next to a world-class library. Many of us have uncorrectable vision loss. Ebooks and digital libraries have opened up countless books for me, and they might very well keep them open for you, when you lose the ability to read with your eyes.

If you, for example,  become print-blind alongside millions of Americans with age-related macular degeneration (a leading cause of visual impairment in those over 60), I hope you will remember my words: Ebooks are accessible books. Get over your technophobia and read.

What I See/Saw I: Hallucinations (Essay 2 of #52essays2017)

I am blind, but that does not mean I live in darkness, and I’m not just talking metaphor here. These days the visionscape confronting me sparkles and undulates, with greater or lesser intensity, constantly, veiling the world beyond with simple and complex hallucinations.

pixelated closeup of Godin's eye with green filter

The brilliance of my visionscape is not less intense in a dark room than in a brilliant sunny outdoors, only there are maybe more facets to it: there is darkness around the edges that gets washed out in a white out of a brilliant day. The pixelated cosmos in which I dwell sometimes takes on a color scheme, as if the whole thing were lit by stage gels. Sometimes I wake up and find my day washed neon pink, other days are teal. Sometimes the palette divides into contrasting colors, red occupying much of the upper left quadrant and green the lower right, or other times it is orange and cobalt.

My recent forays into the wonderful world of aromatics has proved to be a way to take control of what had heretofore been quite out of my control. Apparently I’m not very original in my synesthetic reactions but it’s fun to open a bottle of lavender essential oil and see my world turn violet, or peppermint and watch it turn electric blue.

Beyond or behind all the shimmering and swirling, I get glimpses of the world some people might call the objective reality of sight. That objective reality reveals itself to me now as blobs of light covered over by a fabric of swirls and pulsations.

For me there is no dark. No black. Never.

There is brightness and then there is more brightness. The light of a lamp lingers on my destroyed retinas for minutes, so that even if I have seen the lamp on–verified its onness by rolling my eyeballs to place the lamp in one of the chinks of far peripheral vision that still remain to me, when I turn it off, a blast of light remains to trick me, and sometimes, I must use my hand to verify that the bulb is not still making heat. But even when the physical light remnants disappear completely, there is the overwhelming perception of a pulsating kaleidoscope of pixelated light, leaving the dark room anything but dark.

The tears in the fabric of disease that remain to me to allow actual, external light to enter my visionscape are sometimes a help and sometimes a distraction. Oftentimes I can see points of light in my far periphery, lightbulbs in the distance that can help guide me in the right direction, but I cannot see the furniture that stands directly in my path. As I mentioned in my previous essay, my poor eyesight has never had anything to do with blurry vision. Always it has been a lack of information.

Much of what I see, especially in my peripheral vision, is undulating hallucinations that resemble the wavy floaters of the normal eye (as I remember them). They skitter randomly as sickle-shaped phenomena that are unrelated to external reality, and do not change much from day to night, light to dark, open or closed eye. In their crowdedness, and in their geometric breathing, they remind me of staring at wallpaper on acid way back when. I haven’t done any psychedelics for many years, I promise, but my visions have gotten pretty trippy!

One time, maybe five or six years ago, I was laying on my bed in the daytime in a hungover state, and suddenly a lurid parade of eighteenth century ladies jittered across my visionscape with painted lips formed into ironic smiles. They looked in my direction as they passed–an endless train of cartoonishly garish ladies moving across my field of vision. I remember feeling a vague sense of uncertainty but no fear. The vision lasted a minute or two at most, presenting (I understand now) my bored visual cortex with some much-needed stimulation. I had more vision then than now, but that was around the time that I think of myself as moving from being visually impaired to blind, so that although I could still see the bright window quite clearly behind the hallucination, and maybe a bit of the mirrored vanity beyond, I did not spend a great deal of my life looking at stuff.

I did not name this a hallucination or recognize it as such until my buddy Benjamin asked me if I hallucinated–that he’d heard on NPR about a condition that affects people that lose their vision late in life. That’s when I remembered the ladies in my bedroom and named it a hallucination. Since then I’ve had many more such experiences and have read Hallucinations by Oliver Sacks. “Silent Multitudes” is the first chapter of that book and is dedicated to the phenomenon.

Sacks begins the chapter by describing Rosalie, a woman blind for many years, who suddenly starts experiencing hallucinations and fears for her sanity. To his question “what do you see?” she answers:

“‘People in Eastern dress!”…In drapes, walking up and down stairs … a man who turns towards me and smiles, but he has huge teeth on one side of his mouth. Animals, too. I see this scene with a white building, and it is snowing–a soft snow, it is swirling. I see this horse (not a pretty horse, a drudgery horse) with a harness, dragging snow away … but it keeps switching…. I see a lot of children; they’re walking up and down stairs. They wear bright colors–rose, blue–like Eastern dress.'”

Sacks assures her that she is not losing her mind, but that she is experiencing Charles Bonnet Syndrome, named for a Swiss naturalist, who first described his father’s late-life visions and then experienced them himself when his own vision failed.

Sacks distinguishes between simple and complex hallucinations, which I have come to understand in my own experience. Under normal waking conditions, the simple hallucinations of undulating and pixelated designs breathe and skitter around with such constancy that I do not think about them unless I’m trying to put something into my periphery where I still can perceive some light and movement–when they seem to be in the way of my perception.

My complex hallucinations (as Sacks calls those that have recognizable content, such as people or animals–nameable objects and exhibit the crowding suggested by the chapter title “silent multitudes”) usually come on in the early morning hours after a night of insomnia. They appear without any mental prompting and seem to have nothing to do with my psychological state, if the wakeful tiredness be excepted. When they pop up, it is as if a switch turns on and the whole of my visionscape shifts for a few moments into an outrageous circus of jerky, cartoonish acrobats, jugglers, horses, and countless other abstract big top-inspired shapes and unnamable creatures that tumble with great rapidity into the center of my vision and back out again, as if they are in a tangled loop that keeps repeating with subtle and complex differences. The quality is of a cartoon or of an old-school video game.

One creature that makes an occasional appearance in both the insomnia-inspired complex hallucinations and in my everyday jumble of simple hallucinations is a red Space Invaders critter that marches from my far left periphery towards my nose.

This is so frustrating to write about because it seems weirder and more bombastic than it feels. It’s easier to simply say, “I can’t see.” But onward.

Like the everyday hallucinations, the early morning complex hallucinations are also not affected by my eyes being open or closed, though, if the sky is lightening, a sliver might show behind without changing any of it), and I can look around the scene to examine the vibrating tableau, as you might scan a computer screen if it were placed too close to your face.

As Sacks writes:

“I observed with Rosalie (as with many other patients) that while she was hallucinating, her eyes were open, and even though she could see nothing, her eyes moved here and there, as if looking at an actual scene. It was that which had first caught the nurses’ attention. Such looking or scanning does not occur with imagined scenes; most people, when visualizing or concentrating on their internal imagery, tend to close their eyes or else to have an abstracted gaze, looking at nothing in particular. … one does not hope to discover anything surprising or novel in one’s own imagery, whereas hallucinations may be full of surprises. They are often much more detailed than imagery, and ask to be inspected and studied.”

I find this distinction between mental imagery and hallucinations very helpful, as I have struggled to describe the difference to friends. I also have very intense mental imagery, often arising from internal reflection or prompted by outside stimuli–a novel or movie soundtrack can stimulate this imagery, but this does not present at all like the hallucinations. And yet both keep me tethered to the visible world, to my visual self.

I’m so stuck being a visual person that it is difficult for me to write anything very interesting without seeing it with my inner eye. Yet my inner eye has been so disconnected from actual sight for so long, it may be that I and others ought not to trust it. This is the struggle I find in my writing, which is why I write this now: I doubt my ability to tell you what I see. Have I had any success?

 

*This is essay 2 of #52essays2017, written with all four senses and remembered sight. Check out essay 1 “In the Beginning Were the Eye Doctors” here*

The Genius and his Awl, a blind history

[School for the Young Blind, 1829]

 

I have heard of The Death of Marat. Marat was, they say, dotted with ugly holes in his skin that oozed and gave pain. He only found relief in the bath, so that is where he stayed. With his writing table hovering above the surface of the water, he took the names of traitors and wrote them on his Guillotine list. He was stabbed by mademoiselle Corday, a girl who hoped to stop the madness. David, ever the sycophantic whore of the revolution, bathed the scene in a holy light, forever casting the mastermind of the REIGN OF TERROR a martyr in the gullible eye of the viewer. Once again, the eye deceives the mind!

 

 

Now my professors paint me a rebel because I dare to teach a writing system that works better than that of poor old father Haüy. So much for progress. These petty pedants wouldn’t recognize progress if it bumped them on the back of their heads. Ha, bumps, that’s what we’re talking about! You would have laughed to see me point at them in my tribunal and say, “You are all no better than a lot of Oedipuses and I, like Tiresias, warn you to reconsider your folly!” They did not like that at all. Not at all. Sighted people have very fragile egos!

 

How can they not see that nothing man creates is perfect? Fine-tuning—even the most magnificent instrument—is always possible. Consider the organ. With each new great one built, the air pumps more efficiently, the levers glide more smoothly and the stops are placed ever more precisely. There is something divine in progress. Perhaps even God is a tinkerer? One could wish for some improvements. Hear me Lord, my suggestion for the next version of Man: please make the eyeball a little less delicate. It seems a very important organ to be so vulnerable. Or else make us humans less clumsy…

 

My father was a saddler,

A sad saddler was he,

For I, his little boy,

Would be a saddler too.

Sitting at my father’s bench,

I took the awl in hand,

The awl missed its mark

And found my eye!

 

The infection spread from the poked out eyeball to the other and made me blind. Happily, my sad parents did not let me fall into helplessness. They encouraged me to study with my sisters. Then we learned of this place. I was so excited—they said there would be books for me! And, to be fair, there were books…three books! Each of them: a grammar book, a prayer book and a history of France, weighed more than I did!

They were made before the revolution when the aristocracy was feeling panicky and philanthropic. Ever since the fight for liberté and égalité seized the soul of France, there’s been no money for making blind people books. Not only are these embossed books enormous and expensive to produce, but they are really hard to read. The raised letters are so big and take so long to feel that by the time you get to the end of a sentence, you’ve forgotten the beginning! Nonetheless, I read them. I reread them. The whole time thinking, there must be a better way.

 

Then, when I was twelve, Captain Barbier brought us his Night Writing, a sonography he had invented for Napoleon. The dots and dashes he poked out on thick paper represented sounds, military intelligence that could be read in the dark, without a torch, without alerting the enemy. It was a revelation!! The raised dots were so much easier to feel than raised lines. Not only could we read the dotted signs but, with a small pointed tool, we could poke out dots of our own. Still, there was room for improvement: the captain’s system, while more compact than embossed Latin characters, was still too bulky and the symbols corresponded to sounds rather than letters. In order to read like sighted people, we would need an alphabet.

 

For eight years I’ve worked on my system. Making it readable. Making it easy to learn. Making it into something that is truly useful and life changing. And what do I get? Greif from Barbier and obstinacy from my professors! Imagine, ten men arguing the fate of my invention with more gusto than they would the fate of my head! They act as if my dotted letters threatened the very existence of writing. As if the Latin script had been handed down to Moses with the Ten Commandments!

 

I would not trade my blindness for theirs. I accept the burden of my prophetic vision as have so many of my blind brothers before me. I see bump, no bump, bump, no bump, bump, no bump, bump, as a binary code that will someday link blind technology to that of the sighted in a language so precise as to reveal their Latin characters as chicken scratch!

 

So be it. My bumpy little system does not need their support. That is, dare I say, the genius of it. We can poke out our letters without books…but some books would be nice! And yes, I have noticed that the instrument I use to poke my alphabet looks a lot like a little awl. The irony is not lost on me. It is a very clever awl that pokes holes in whatever it is asked: saddles, harnesses, belts, boots, corsets, hearts, eyes, minds, time!

 

Thus, my blind eyes are the ultimate awl that burst through time to look to you, spectators of the future, to see that I, Braille, invented.

 

 

*First published as “The Awl” at FLAPPERHOUSE*