The Unknown

by Marc Maurer

From the Editor: Marc Maurer is a man who needs no introduction, his tenure as the longest-serving President of the National Federation of the Blind and his continuing legal work speak for themselves. What many may not know is the constant wondering, thinking, and imagining that goes on in his head and which his reduced schedule now allows him to write for consideration and discussion.

One question we are constantly asked is what we think about when someone talks about color. If we are totally blind, what color do we see in our heads? I used to think that my answers were shared by all totally blind people, but Dr. Maurer convinces me that this view is wrong. Here is how he did it:
           
In the National Federation of the Blind we talk about blindness a lot, but the conversations are different from those that occur in other arenas. Diabetes is a major cause of blindness—some would say the major cause of blindness--in the United States. Retinitis pigmentosa and macular degeneration are also significant causes of blindness. However, we don’t spend a lot of time on these topics because our focus is not on what causes blindness but on what to do as a blind person to lead a joyful life when the time has come that the medical profession has decided that it has no remedies to offer that will restore sight. We take blindness as a given, and we try to decide what can be done to bring productivity and an active life to those who are blind.

Nonetheless, the calls we get at the national headquarters of the Federation are often from people who want to tell us about their vision loss, the causes of their vision loss, the difficulties they encounter because of vision loss, the unusual experiences they have because of vision loss, and their heartfelt longing to have their vision restored. These expressions come both from people who are encountering vision loss for the first time and from people who have encountered vision loss in the past but are experiencing more of it today.

Consider for example a person who has been partially blind but who is now losing the remainder of that person’s vision. Even if that person has been a part of the Federation and has learned thoroughly the philosophy of opportunity that we proclaim in the Federation, that person experiences loss and distress that accompanies loss with the diminution of vision. Ray McGeorge, a leader from Colorado who joined the Federation in the 1950s, sometimes possessed vision and sometimes not. He knew what the Federation believed about blindness, and he knew about the capacity of blind people. He was a machinist, and he was very good at what he did. Sometimes he was able to drive, and sometimes he could not. When in later life he lost his remaining vision, he agonized over the process. He worried not only about his personal loss but also about what people thought about his reaction to it. I learned this only later when I discussed his vision loss with others. I did not know it had been so hard on him, and I was sorry that I hadn’t been aware of his personal struggle.

In the last year, I have had the opportunity to visit with a number of eye doctors. They have a very predictable point of view. They believe that loss of vision is a tragedy, and they believe that anybody who has lost it is in terrible circumstances. They believe that maintaining any amount of vision is the highest priority in their practices, and they will not consider the possibility that any loss of vision may have advantages.

Some of the people who call here to our headquarters tell us that they have a tiny bit of remaining vision but that the eye which has this vision also gives them extraordinary pain. One of the people who called said the eye hurt so much that it ought to be removed, but medical officials refused. The person calling asked us for advice about what to do. Somehow, we are expected to have answers.

In my visits with the eye doctors in the last year, I have asked a number of questions about the prognosis for restoring tiny amounts of vision or about what the doctors expect in the progress of certain eye diseases. The astonishing part for me in the answers these doctors have given is that they don’t really know. When eye diseases have progressed to a certain degree, the doctors don’t know what they can do, and they don’t know what the patient can expect.

None of this would be especially revealing except that discussions among Federation members also demonstrate phenomena that have not previously been brought dramatically to my attention. Blind people (or some of them anyway) “see” things all the time. What is it that they see? What I have heard from my colleagues is that they see white mist, black dots, flashing lights, bands of color, or a kaleidoscope of images. The images are not always static—they change and progress. Sometimes the images are superimposed on visual cues, which can be confusing. Sometimes the images are strong enough that they disturb sleep or interrupt thought.

I want to emphasize that I don’t believe the people from whom I have heard these things are experiencing psychological disorders. I think the phenomena they experience are real. However, I don’t think the doctors know much about it. Furthermore, as far as I can tell, the mystification in the medical profession is sufficiently profound that this type of experience is outside the current realm of study. Are these phenomena caused by specific conditions of the eye created by stimulation to the brain that occurs only in certain eye diseases? I don’t think that there is currently an answer to the question. Consequently, it seems to me that we should share information on the point. Do these thoughts change our point of view in the Federation? I suspect that they do not, but I imagine that a greater knowledge of the experiences that blind people have with the phenomena that comes to us will be beneficial in welcoming people to the ranks of our membership.

Confronting myths about blindness is one of the things we do in the Federation. A number of sighted people have indicated to me (I suspect doctors feel the same) that blind people see black all of the time. I am totally blind, and I do not have this experience. My imagination tells me that I see light and color. I don’t imagine that my imagination of light and color matters very much except to me, but the experience of black which is attributed to the blind also suggests to those who believe in it that the lives of blind people are dark and dreary. My imagination gives color and light to my life even though I don’t see it in a physical sense. However, I have not interviewed other blind people to learn what their experiences tell them about light, color, depth, perspective, and the other attributes of existence associated with vision. It might help us to know what the range of these experiences could tell us, and what better place to discuss this than in our magazine.