Blind Reading

By the very nature of being a handler, my life is intimately intertwined with that of my guide dog. And so, by extension, is my blog. But clearly based on the variety of tags and such in the sidebar, I have many other interests. In fact, I often think of something randomly to post while doing something completely unrelated — most times even to the thing I think of to post. As such, I’ve amassed a great deal of draft posts with notes to write a post about such-and-such when I have the time. Though, more accurately that could be described as inclination because while the idea might be an interesting thing to blog and I may have had tons of things to say when it popped into my head, letting it sit for even a few hours seems to rob me of the desire to write it out. But I’m working on that and trying to whittle these draft posts down — or at least determine what my random notes to myself mean so I can write the post someday!

So, what’s all that have to do with reading? Well, the lesser reason is that much like I am wishing to whittle down these draft posts of mine, I’ve also been diligently working at decreasing the mass of books that I’ve been meaning to read. I started the year with 154 books in my queue. I was very appalled at this staggering number because I’ve always been a voracious reader and yet this pile had just grown and grown. In fact, much of the reason it grew was because I was so intimidated by the size that for a long time I avoided even attempting to read any of those books because I felt it was such an impossible task. And then, earlier this year I decided that was just stupid and there were far too many good books amongst those many tomes that I just had to start working at reading them and getting that pile down. Since joining Goodreads I’ve been more able to be organized about this endeavor and it seems that while I’ve read, as of today, 74 books this year I still have 105 books in that pile. This is mostly because of my obsession with acquiring books and I don’t regret it at all. But I have realized, much like getting all these draft posts actually written, that this will be a long, possibly never-ending task.

However, the more accurate reasoning for this post came about because of two things. One is that while I have wanted to blog more about my visual impairment I tend to forget to really sit down and do just that and even when I have something related to the subject I somehow gloss over it without even realizing. I think this is mostly because I don’t sit around and think of myself as solely a blind person, anymore than I think of myself solely as a guide dog handler or a writer or half-Asian. All these things just are facets of me as a person and so I tend to be rather unconscious of anything specific unless it is there as a true focus of what I’m currently thinking. The second reason came about at work yesterday when I was reminded of another incident from a few months back.

One of my issues at my work revolves around the task of data entry. When I’d interviewed for this position I’d been very honest about both my extreme distaste of that task and my abilities, or lack thereof, in doing such work. I know this for a fact because the task itself was one I’d grown to loathe as my previous job, which was only supposed to have a limited amount of data entry, had morphed into purely data entry. (Mostly because I type fast.) And also because of the chronic headaches I suffer. Data entry — and to a lesser extent computer use in general — is a strain for me even with adaptive devices. So, wouldn’t you know that eventually it’d come to a point where I was doing a lot of data entry. And if that weren’t bad enough, it was in a program where JAWS does not function and the text is black with a grey background that can’t be manipulated. With a larger monitor, I can see well enough to read regular text, though I prefer to enlarge it if I can and given my color perception issues black on white is the best format to see things. Though that in itself is where the strain comes from because it affects my light sensitivity and thus can be painful after a length of time, which is why I rely on JAWS. I’d made all this clear, but continued to try and explain my point. And then one day one of my superiors said to me that she had seen me, prior to my work shift beginning, at my desk reading a paperback novel. Her exact wording was: “If you can read a paperback book, you can work on this data entry.”

I was quite literally shocked into silence.

This type of statement isn’t something new to me. In fact, the first person to ever verbalize it to my face was my TVI1 who took it as a personal insult that I’d refuse to use large print text and force myself to read a regular print novel. But herein is one interesting tidbit about achromatopsia, my cause of blindness, I can very comfortably read regular sized print. In fact, it’s not a strain at all, though; it might appear so because of the fact I need to hold it so close to my face. But this is true of ANY size print because I do not possess cones, the part of one’s retina that allows them to focus on things far away. This means that while I could theoretically hold a large print book farther from my face than something in 12 point font, it would still be relatively close. Having tested this over the years, the difference in distance is infinitesimal if it exists at all. But this is a concept that is really difficult to get across to others because it’s not, for lack of a better word, normal. And as my condition is frightfully rare, I’ve spent a good portion of my life talking myself blue trying to get the point across.

Anyway, what infuriates me about it – with specific regard to my superior’s assumption – is that no one really knows how another person can see. A fully sighted person has no more concept of how my vision is than I have an understanding of how perfect vision is. I’ve always seen the way I do and given the astounding non-degenerative aspect of achromatopsia probably always will see this same way. More insulting, though, is the idea that because I can see one thing I surely am able to see another even though those two things are hardly the same.

I’m pretty sure that this woman, in her misguided attempt to justify expecting me to complete a task I am basically incapable of working on, is arguing the same point that TVI was back so many years ago. The TVI thought I was straining myself to read the novel because I was refusing to use the adaptive accommodations given me. This was almost a logical reason because I was doing that in other cases, just not this specific example. My superior however seems to be of a more common belief that vision is so easily subjective and if I can easily sit there reading a book, then a computer screen is similar enough. To her, the two are not mutually exclusive and therein is the flaw so many sighted people have about those of us with low or no vision.

The rudeness of the comment notwithstanding, I must admit that I understand the concept of its root more than you might think. As I said, it’s not the norm for a visually impaired person to be so easily able to read regular print — and yet not be able to see a computer screen’s blown up text from more than 10 inches away. But that’s just one of the many strange things about achromatopsia — and I do promise to continue blogging about those as the mood strikes. In fact, it’s only been in the last decade of my life that I’ve truly begun to realize how, well, thankful I should be for this fact. Though, it should be understood that while I can read regular print, it’s not so simple as that given the other limitations of my eye disorder. In specific I am referring to my extreme light sensitivity. For instance, for the most part I am completely blind outside. And it’s not a lack of vision, it’s a painful saturation of vision because of the light from not just the sun, but the very sky itself.2 It’s also why I abhor snow because it only increases the discomfort of being outside — and I sort of hate being cold. So, for the most part this little ability is pretty much useless in my daily life and so generally I don’t bother with trying to read things except for pleasure. That is, books.

However, I won’t say that there aren’t times I’d trade being able to sit at home with a reading lamp on and a good novel spread out in my hands for the ability to read a damn street sign or go outside without physical discomfort or pain. But then I think about how disorienting that would be and I can’t justify consciously inflicting that on myself.

  1. TVI stands for “Teacher of the Visually Impaired” and is an itinerant teacher assigned to a blind person usually through primary school (elementary through high school). They do a wide variety of things from giving lessons in Braille and other “adaptive techniques” to advocating for the student for services and acting as a liaison between the student, their school, state and parents.
  2. I’ve often thought of moving to Washington State just to see how that would affect my navigation outside given all the overcast days, but then I’d have all the accompanying sinus issues from all the moisture.

Comments

  1. This is really interesting. As a totally blind person, it’s always been very hard for me to understand how reading print in a book is different from reading on a computer, which is different than reading a sign, Etc. As much as I hate to say it, at one point, I probably would have said something similar to what your coworker said, although hopefully in a nicer way.

    I have to admit, though, that I’m pretty envious that you can just pick up any old book and read it. If there was one thing I had to say I absolutely hate about being totally blind, it would be my limited access to books. I love books, and what I wouldn’t give to just wander into a bookstore or library and start reading.

    Like I said, very interesting, and thought-provoking, too.

    • As I said it isn’t the norm for a legally blind person. Visual acuity is a weird thing, though, and achromatopsia is definitely a unique disorder to have because of this little quirk. I know many others with much more vision than me and they can’t read the print I can. It sometimes boggles my mind. When I was a child I didn’t really understand the confusion and fascination others had about it, as I said I’ve always seen the way I do so it wasn’t odd to me.

      As an adult I am very aware of the difference, though. Sadly it doesn’t help me much in daily life as much as one would think — my vision is very dependent on light levels so the ability to read regular print up close is more often a superfulous benefit. It does make for ease in getting books, which are absolutely a passion of mine in life. And I’ve often wondered how much I’d read if I were limited to only large print or Braille or audio. (Which, by the way, are all things I do utilize to an extent.)

      I’ll probably revisit the topic again since I’ve much more to say about it. But my fingers were starting to ache from typing. ;)

  2. I have a 7 year old son with achromatopsia and since he has no other reference point in which to compare his vision to (of lack of), it is difficult for us to understand what he actually sees. I do know from seeing specialists in this field that his vision is much poorer than most other achromats. He has a +10.50 prescription, therefore cannot read print in a standard book. He is currently learning to read and write in Braille. Unfortunately he was diagnosed pretty late, at 2 1/2 years old, so we had to play “catch up” once he finally got corrective lenses. My son, Rocco, wears red tinted lenses which makes going outside a lot easier.

    When you mention going outside as a “painful saturation” what is the pain you feel? My son has never mentioned light as being painful and I wonder if the pain is such a part of daily life that he no longer refers to it as painful in his own mind.

    As the mother of someone who is blind I love to read about the experiences of other visually impaired people. Thanks for the post.

    Sascha

    • I wouldn’t say 2 1/2 is late, considering (a.) I wasn’t diagnosed until I was 4 and (b.) achromatopsia is a tricky disorder to diagnose given the fact that the retina appears completely intact.

      I worded my statement about reading regular print very carefully because obviously everyone’s vision is different — even among achromats. But the general basis for this is because of the nature of how the eye works. Rods and cones overlap a bit in what they do, but generally in terms of seeing at night or up close, rods are the primary functioning part of the retina and so for a person with achromatopsia these things are not, generally, as limited as in other forms of blindness. (It’s been speculated by my family that at least in terms of walking around, I probably see better at night than they do because a normally sighted person isn’t used to relying on solely that part of their eye. I can’t really prove that one way or the other, but it’s interesting to think about.)

      I have the red lenses as well and they do cut down dramatically on the glare, but it’s still present. The analogy I use to explain this to sighted people is the concept of being dazzled by high beams. It’s painful to you because you are at that point relying on only the vision from your rods and this part of the eye “saturates” at higher light levels. In a fully functioning eye, what helps you to overcome that so quickly (beside the fact that the car probably is passing you) is that when this saturation occurs, your cones are able to pick up the slack. You’re still dazzled while your eye adjusts and everything sorts itself out so the proper parts of the eye are working. But for that brief moment it was painful. Now think of that pain on a grander scale because without cones any source of light can cause that. A general coping method for this is to squint — and I mean to a level that perhaps it seems the person’s eyes aren’t even open — to try and block out as much light as possible so that you are able to see something. Couple that with blinking rapidly and that’s basically how a very light sensitive achromat gets around outside if they have enough residual vision to do so.

      I find the squinting/blinking thing to be an even bigger headache inducing thing because it just adds to the strain that the light has caused. I personally found the strain to be too much and eventually worked towards finding methods to not have to deal with it, i.e. obtaining a guide dog. Interestingly enough a byproduct of that is I have managed to teach myself — or rather force — to open my eyes even in those instances where my vision is being washed out by light (and the instinct is to squint or keep my eyes closed). It fascinates my eye specialist and we’ve chatted on about the hows and whys of that.

      I’m rambling. Sorry. Anyway, I’m happy that it was helpful to you — and I do plan to revisit the topic in other ways, so I do hope you visit again! I do like to hear that others can benefit from what I write here, even if it’s just to provoke some thought. ;)

  3. I understand a bit where you are coming from. I can read print, as long as I have good glare-free light in the right position relative to me. Computers are hard because the screens are so bright. Large print is easier, but it costs so much more and is harder to find. I hate that new books are released in regular print, but the LP edition isn’t released ’til a year later. the difference for me is that my vision changes from day to day, and as time passes, I slowly lose more vision. My eye doctor loves that I read, though. He tells me to read ’til my eyes hurt or I get a headache. The whole use it or lose it thing.

    • Reading is one of those things that has been ingrained in me since I was very little. Pretty much my entire family, especially my grandmother, are big into literacy and books and I just grew up with that. So, I have to say that I’m very lucky in the sense that I never had to be especially deprived in what I could get my hands on to read.

      That said, while my vision is incredibly stable (another tidbit of achromatopsia trivia) I can’t just plunk down anywhere with a regular print book. If it’s too bright, I can’t see, so obviously I can’t read the print (regardless of the size). I do also have trouble with some typesets: those that are too squished together or just a bit below the “norm” size make it difficult, though not impossible. Generally, I prefer hardback copies of books because the print is just a smidge bigger than a paperback copy and that’s a smidge that makes it so much more comfortable for me. Also, there is the factor of my chronic headaches, which to this day I have no clear idea of what causes them, but neither can I totally rule out my eye condition. Anyway, when I’ve a headache (and I don’t mean the constant low grade one I always have) I can’t read, especially when it’s already making my eyes feel tired and sore. And that has nothing to do with the size of the print.

      I’m definitely an advocate for the use it if you have it. I actually bristle a bit when I hear things (i.e., guide dog schools) advising — even forcing — blind persons to not use their residual vision. Especially in terms of recreational avenues. I don’t see why you wouldn’t want to!

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