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by D. S. Sully, Wausau, Wisconsin
Being an addicted news junkie, I begin most days with a trip to the newspaper box. After retrieving the morning edition, I make a hasty retreat to my favorite La-Z-Boy. Lying on a nearby table are three magnifiers, each varying in intensity. One I use to scan the headlines. Another then becomes my tool for reading selected articles. Finally, if it is necessary to zero in on any of the miniscule classifieds, I turn to the tiniest, yet most powerful, of the three accommodating devices.
Anyone watching my newspaper antics would surely come to the conclusion that this guy really has "bad eyes" and wouldn't be good for much without all that magnifier power in hand. However, if the observations continue, soon come the contradictions.
Once the paper is put down, my next move is generally outward bound. Perhaps I might mow the lawn, tend the garden, or just go for a bike ride. My transformation from one extreme to the other is likely to fall somewhere between confusing and confounding to the casual observer.
What I am describing results from a condition known as macular degeneration (MD). In my particular scenario, it is specifically termed Stargardt's Disease. Diagnosed at age ten, being out of sight has become my daily routine. With an acuity rated at less than 20/200, I have been thrust into a category called low vision for almost half a century. However, low vision does not mean no vision, a distinction which lends itself to all kinds of predicaments.
From a technical standpoint, those of us with macular degeneration usually qualify as legally blind. In many ways, this is one of the most misleading of terms. To the general public, the word "blind" is normally construed in its extreme context, meaning totally blind. Even the advocacy organizations, which title themselves "of the blind and visually impaired" are often slanted toward a total loss of vision.
Accordingly, the MD crowd, with our residual vision, often feel a sense of "misfitting." When we utilize ZoomText computer software, magnifiers, and close-ups, rather than white canes, dog guides, or braille, we are even sometimes criticized as being in denial of our conditions.
Unlike many disabilities, macular degeneration is not outwardly visible, and so it goes unperceived as an impairment. For those of us with MD, this creates a dilemma about whether to explain our visual situation or not. Losing sight of the world around you is nothing to brag about, nor is it something to be ashamed of. But it can become an incredibly personal and strategic issue, deciding just how much disclosure is necessary. Explaining your situation most always leads to confusion and perhaps even exclusion. Ironically, remaining discreet seems to bring the same result.
Describing what we can and cannot see because of macular degeneration seems to muddle the minds of many. Some maliciously label it as deception for anyone with a vision loss to act as if they are sighted. This contention only demonstrates a lack of understanding about the complex sense of eyesight shared by both the general population and many individuals within the blindness and visually impaired community.
Here is one case in point: Although people tend to describe their vision in terms of acuity (20/20 or 20/200), this assumes that central and peripheral vision are the same. Normally functioning eyes are so well synchronized that most people cannot understand what happens when the synchronization is incomplete. Individuals with tunnel vision, for example, are perceived as seeing a concise limited field. However, unless you have lived with MD, it is difficult to comprehend just what is seen solely through peripheral vision, which crosses over from left to right as well as both up and down. Because peripheral vision allows for a wide field of view, it can give a misleading impression. Just because we have a certain level of acuity doesn't guarantee that we can see details of something where it happens to fall in our field of vision. So, for example, unless we are zeroing in on reading or writing, we may get around pretty well with an MD diagnosis. Does this mean we are blind? Disabled? Differently able? None of the above? From my personal experience, just posing these inquiries can raise considerable ire both inside and outside of the blindness community.
For varying reasons, macular degeneration generates both questions and criticisms. One of the most common inquisitions is "Why don't you just get glasses?" On the other hand, within the disability community, sometimes criticisms materialize about the absence of white canes among some persons with MD. My personal response to this viewpoint has always been the same. "Which hand would I hold the cane with when mowing the lawn or shoveling the snow?" Though this may sound flippant, it is a serious response.
No, those of us with macular degeneration are not in denial of our situations. We have no choice but to take our visual limitations into account. It is not a matter of deception that we appear more private concerning what we can and cannot see. Instead of talking about it, we go about our lives making the best of residual vision. At times, this may translate into unconventional predicaments, yet we somehow persevere. Like others with vision losses, we are birds of a feather who flutter and fly by whatever means works best for us.
D. S. Sully is the author of GLIMPSE, a wiseacre anthology which chronicles the antics and antagonisms of being out of sight.
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