Second Shelf, in back to the right, left of the Mayonnaise
Either a person is blind or not, right? Can someone be a “little” blind or wouldn’t that mean they are not blind at all, but a “little” sighted? “Not blind enough to be blind. Not sighted enough to be sighted.” This, a statement made by a friend referring to her spouse, a man whose visual world had been slowly closing in as a result of advanced Retinitis Pigmentosa. I imagine this statement would make little sense to most people. Indeed, a few years ago, it would have left me scratching my head.
Under the right conditions, Mandy appears to be a typical 13-year old. When well rested and in a familiar, brightly lit area, Mandy is just another kid. “Does she really need it?” are the thoughts I imagine perplexed onlookers are thinking when they observe her with her cane, often holding it carelessly, while jumping from one floor tile to only other same colored tiles in the supermarket. That and successfully avoiding “stepping on the cracks” gives the appearance of minimal, if any, affliction.
I can recall more than one instance when a parent of one of Mandy’s peers, already well acquainted with her impairment, looked on in astonishment at Mandy bump into a rearranged or neutral colored chair against a stark background or feel her way through a dimly lit or unfamiliar hall when without her cane. Even more striking are the gasps of disbelief when, for whatever the reason, the subject of teen driving inevitably crops up, and it becomes known that Mandy will not be getting a driver’s license. I admit, my initial gut reaction is annoyance, “Do you think she has a cane because she has vision just a little worse than other kids?” I do conceal the impulse to share these fleeting thoughts, of course, as I am fully aware of the naiveté inherent in well meaning people who have never had to confront these realities. Of course I am aware, since I used to be one.
The surprised reactions have gotten easier to deal with over time. I expect them. I have found creative ways to avoid tender subjects when I am feeling vulnerable and sensitive or, I am armed and ready with responses and education. Given Mandy’s usual “typical” appearing behavior in structured/planned settings, people have come to expect, well, the expected from her (this is a double-edged sword; more on this another time).
I have thought a great deal over the years about how to describe to someone just how different and challenging it is to raise and teach a vision-impaired child truly is, despite her still having decent acuity and a good deal of useable vision. When everyday people don’t seem to get it and some situation arises where I feel I need (or want) to help someone see just how pervasive the impact of deficits in vision are to acquiring basic life skills and the general task of parenting, I have found myself uncharacteristically without words.
We couldn’t seem to come up with anything quite fitting enough to capture our daily reality. Our first ideas just weren’t sufficient…....”sneaking” birthday gifts in the house easily undetected (heck, I can do that with my fully sighted husband as long as the television is on), installing an institution style fluorescent light fixture in the living room, needing to “teach” Mandy how to find something she had dropped.
In an effort to not embellish our experience either, I began trying to think of an example of something ordinary, yet frustrating just the same. One day it came to me. A simple, normal, not over-the-top and yet almost daily occurrence in our household and one every reader can identify with: the jelly jar. You read that right: the jelly jar.
Do you remember how you learned to make a peanut butter and jelly sandwich (or, ham and mustard or turkey and mayo……..)? I don’t remember how I learned. I just did. I just “knew” what to do once the time came to do it. Was it that way for you too? Now, parents, think about this from the perspective of raising your children. Do you remember how they learned to make their first sandwich? Did you “teach” or show them how? I bet some of you are scratching your heads right about now and doing some mental judo to try to remember and/or to try to describe how, in many cases, you did not ever actually go out of your way to demonstrate to your children, step by step, how to make their first sandwich. They just did. It was messy, no doubt, but they did it. Were we all hard-wired with an instinctive knowledge of exactly how to do this simple, yet also highly evolved task? (No, we weren’t) So, how did we learn? It’s called: (here comes some of my college psych “theory of learning” knowledge I thought I’d never use again) Incidental Learning. Also referred to as “informal learning”, incidental learning is learning which takes place without any intent to learn or to teach. Not surprising, the majority of incidental learning is visual. At some point parents, you went to make a sandwich (where you needed jelly, mayo or mustard…….work with me here). One or more of your children were in your vicinity and “noticed” you making the sandwich. They watched you open the refrigerator and observed you reach to the back right of the second shelf for the jar of jelly. Guess what mom? At that moment, you “taught” your child where the jelly is kept. While engaged in some other activity, presumably, the child then “noticed” you struggle a bit to open the jelly jar, the lid stuck tightly with the residue of gunk from previous rounds of use. Now, the child has “learned” how, with what degree of force, to open the jelly jar. You go on to get the bread and peanut butter. You spread each with a separate knife on two separate slices, scraping if necessary, close the sides together and viola…..a peanut butter and jelly sandwich. The next time little Jimmy has a hankering for a PB & J; he may be ready to be on his own. He may want to do it himself or you, up to your ears folding laundry in the other room, may welcome Jimmy’s independence for this safe, simple task. He will go on to make many sandwiches and you and he will likely never talk about how to do it, how you knew how to do it or how he figured out how to do it. It just happens.
Almost nothing is learned this way for a child with significant vision impairment. For blind children, there is virtually no incidental learning. Verbal description and hand over hand instruction is often the bare minimum required to teach even the simplest of tasks for the blind child. So it is for the vision-impaired child as well. Despite having a measurable visual advantage from their blind peers, the vision-impaired child’s ability to learn from the natural occurrences in their environment is strangely similar.
I must’ve pulled the jelly jar out of the refrigerator dozens and dozens of times before Mandy was at an age appropriate for her to attempt making her own sandwich. When the time came, she had no idea where the jelly was, how to “look” for it or what to do with it when she found it. We literally had to “teach’ her where it was and what to do. Even the concept that opening the jelly jar requires more force (and why) than say, the peanut butter jar. This may not sound like much of a heavy challenge, and indeed, it really was not. However, this has been how just about everything was taught to, and learned by Mandy. Add to that her feisty, easily frustrated temperament, and, well, it has not been easy.
I’ve learned quite a lot from being submerged in the world of disability, special education and IEPs. Like so many other parents and family members of children with additional challenges, I have learned to assume little, and if at all possible, nothing. This goes for typical children as well. None of us really knows what any other parent is contending with in raising a little person into a mature, well-adjusted adult ready to exert their independence and make their mark on the world. Let’s take a tip from our blind and vision-impaired neighbors. The next time we see a child with a cane who clearly can distinguish the brown from the yellow tiles, or any other special child displaying behavior which is not consistent with what we would expect given our insufficient preconceptions, let’s consider the unseen.
