Living the In-Between
Having low vision, neither blind living in total darkness, nor fully sighted is a fascinating and unique way to live. There are many of us in this category. We are in between.
My name is Diane. I am one of the inbetweeners. I grew up from the age of nine with low vision. Low enough to trip over the curb, fall flat on my face, and hear someone say, “Oh, I guess that was something you couldn’t see!” I would try to be really fast not to miss the school bus and fall over a fire hydrant and someone would say “Why did you do that?” Yet I had enough vision to become a licensed professional teacher, active member of multicultural communities throughout many countries, a wife, mother and now grandmother.
This is my narrative of the low vision trilogy: the good, the bad and the mediocre of living with low vision.
The good.
I needed to answer the question: Am I a person with low vision or a person living with low vision? Awakening to the reality that I am a person with low vision was the beginning of an inner harmony that in its own way has brought much joy throughout both my childhood and adulthood.
As a person with low vision, low vision is an integral part of who I am. I am not merely living with an aspect or variable of life that can be changed. I cannot change that I have low vision the way I can change what I wear, or the way I can decide how to use other capabilities. A sighted person can temporarily close their eyes. I cannot, even temporarily, experience full sightedness. I cannot say that I would rather be totally blind living in darkness nor that I would rather be fully sighted with a driver’s license. I must accept my low vision as it is and the way it shapes my experiences, how others see me and how I see others. This understanding and self-acceptance helped me come to know and love my life as it is, not as it could be. It also led me to develop a lot of perseverance, determination, edge, resilience – characteristics that have helped me my whole life.
The bad
The sequel to the discovery that my personality has developed many tricks and tips to handle a sighted world is the bad: awakening to the never ending and not-going-away limit to relationships brought about by the limitation of communication resulting from low vision.
I lack the sight needed to interact through nonverbal communication and recognize visual social cues, which, I discovered over time, are many. Lacking the sight to interpret significant personal and social interactions profoundly influenced my own development. Growing up I developed aspects of my personality that come across to others at times as rigid, insensitive and self-centered. These attributes could not be further from the truth regarding what is inside my heart. My low vision tends to be least disruptive in my ability to thrive, and accurately represent who I am, when everything has a place and everything is in its place. This brings a calm that allows me to be more capable than stumbling around, spending all afternoon looking for what I spent all morning losing.
The harmony
When there is rhyme, reason and order in life I can shine and find ways to bring harmony to the ordinary and mundane. The sighted world has a lot of systems that bring that harmony to the experiences of sighted people, possibly without even realizing it. For example, when you go grocery shopping in a store, there are wide aisles and plenty of people pushing grocery cards. How am I supposed to signal people that I can’t tell whether they are looking at me or looking at a grocery list, nor which direction they are heading. If someone has been still for a long time, I might not even realize they are there until they move. While I can often move through the aisles just fine, with circumstances impacting my already low vision, like lighting and contrast, I can’t always avoid accidentally running into people. Yet, for the most part, I can make my way through the grocery store and do my shopping just fine. But I have no way of signaling people that, while I can see well enough to move around, I can’t see well enough to predict what they are going to do. Yet the expectation on people’s part that I would somehow signal to them rather than unexpectedly run into them is reasonable. So I need a signal that other shoppers, fully sighted shoppers, would understand. Most fully sighted adults drive cars. Drivers signal each other using their blinkers. This lets other drivers know what to expect and allows for harmony among all the drivers sharing the road.
Well, low vision people also need to signal what we are going to do, but we have no nonverbal signal to communicate to others. The totally blind often use a cane or a guide dog. These are two known symbols of blindness, and they send a signal to the sighted that bringing about shared harmony in the environment rests on their shoulders because the blind person can’t see what to expect. Low vision falls in the in-between; the person has enough sight not to live in the dark, and yet is not fully sighted even with the help of glasses, and it is up to us to explore and discover tips, tricks and hacks to live righteously and joyfully, both living the fullness of our own capacity and finding ways to harmonize with those around us, even when we don’t have a common language of signals and understanding.