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ibidem-Press, Stuttgart
Contents
1 It is only with the heart that one can see rightly … (Antoine de Saint-Exupéry)
2 Best of Elvis
3 Blind is the one who refuses to see
4 Communication serves the proper self (Jens Wildenhain)
5 Love at first sight
6 Learning on the model
7 Colors, shapes and optical illusions
8 A crossing is a crossing is a crossing
9 The slightly different alphabetization
10 ‘Wrapping artist’
11 Jazz dance with open eyes
12 TV-listening with pictures
13 From the Eye Confusion Book to the Yearbook
14 Summary: seeing with all senses
View to the sky
Notes
Self-awareness is your awareness of the world, which you experience through the five senses (sound, touch, sight, taste, and smell). Pay attention to your sensory impressions and be aware of those five ways that the world comes to you.
Deepak Chopra
I hope readers will consider, especially in this age of the World Wide Web, that as miraculous as it is, we still need to be in the same room with all five senses if we are to empathize with each other. Gloria Steinem
I don’t remember the exact point in time because at the beginning I didn’t attach much importance to this information. It must have been toward the end of the 1980s when Marco, my husband, mentioned various times that it was by then possible to correct even severe visual impairment through surgery. He had read that Russian surgeons had developed a treatment that enabled patients with complex vision problems and even blind people to see.
“And how do they reach that?”
“If I got it right”, replied Marco, “they extract the patient’s own lenses with the help of particular devices and replace them by plastic lenses.”
My skepticism remained, even though the news should have given me a glimmer of hope. For outsiders, my rather hostile attitude is certainly difficult to comprehend, because I was severely visually impaired since birth. Long ago, I had reconciled myself to my blindness. Certainly, many things were awkward and time-consuming, and I was dependent on outside help, especially from Marco. But I was sufficiently compensated for this—at least in my view. My other senses, especially hearing and touch, were far more developed than with many people in possession of their sight.1 And they still are: Even nowadays, when preparing a pizza, I don’t limit myself to have a look through the window of the oven. I open it and orient myself to the smell and above all to the sizzle. I pay most attention to what I hear, that is to the heartbeat of the pizza.
The better development of the existing senses is due to the fact that parts of the brain that are actually designed for seeing take over other tasks in the neural network. Almost all persons born blind or those who went blind at an early age report this phenomenon which is confirmed by a steadily growing number of neurobiologists. For example, Beau Lotto describes the case of a blind boy who uses so-called echolocation to orient himself: He manages to identify individual surroundings and objects by clicking his tongue. Because of the echo, he knows where he is and what objects are in front of him.2
Until that time, I had not wished to be able to see. To put it clearly, I never gave it a thought. Many years later, I noticed on the basis of some inquiries that I was no exception. Most people who had been blind since birth and those who had lost their sight very early felt no shortage and were doing quite well in everyday life.3 As an example, the story of Saliya Kahawatte, a German whose father came from Senegal, may serve. In his novel Mein Blind Date mit dem Leben (My Blind Date with Life), which was turned into a movie in 2017, he tells in detail how he managed over years to hide his severe visual impairment, a retinal detachment, from his environment.4 For me it was easy to identify myself with his narratives, because I had developed similar behaviors. I avoided talking to outsiders—that is all those whom I had no regular contact with—about my vision problems. What for? Would they really have understood my particular difficulties? How might they have treated me after my confession? When he suffers a severe breakdown Kahawatte decides to deal overtly with his blindness. He is quite successful in arranging his private as well as his professional life. He writes that he is at peace with himself, reaches his goals and enjoys every day.5
A similar mindset requires will-power and perseverance. At various times well-intentioned caretakers tried to convince Saliya Kahawatte to work in the fabrication of brooms, the usual occupation of blind people. Even nowadays you can find ads on the internet that offer brushes and brooms handmade by blind people. Saliya resisted successfully. He traces similar advices back to the fact that sighted people very rarely are able to put themselves in the position of a blind person, mainly because they lack the necessary contacts.
As indicated above I can identify quite well with what he himself is telling. In his private life he keeps his vision problems even nowadays mostly to himself—for various reasons. The main reason is the insecurity most sighted people manifest when in contact with a blind person. When he says: ‘I’m visually impaired’ or ‘I’m almost blind’ they don’t know how to deal with his revelation. They react upset, full of compassion, with sadness or deeply embarrassed. They want to help, but show it in an awkward manner. Most of them are tensed up. He doesn’t want to blame them for their behavior; there are many reasons for it. It is caused by the fact that sighted and blind persons don’t have occasion to meet. They are separated since childhood; they frequent different schools, often even different nursery schools. He considers this as plain madness.6
Unfortunately, inclusive schooling of children who are visually impaired or suffer from an impairment of one of the other senses remains wishful thinking despite the UN Disability Rights Convention. Most schools lack the necessary preconditions or equipment. In consequence there are quite curious misjudgments of sighted people with regards to the blind. A blind blogger, a man at the beginning of his forties, tells about a memorable encounter in a subway-train in Munich.7 A younger woman gets seated in front of him and converses with him about his personal conditions. All at once, the lady asks him in the overcrowded train quite loud: “Tell me, please, do blind people have sex?” The other passengers seated or standing near them prick up their ears. The blind blogger, acquainted to this type of questions, answers without reserve: “Sure, if you want to, we can try it out immediately.” No wonder that the woman does not reply, but leaves the train at the next stop.
In general, it is not astonishing that only very few people who were born blind or went blind in their early childhood consider surgery, even though quite difficult interventions have become more and more successful in the 21st century. Saliya Kahawatte, too, sees no necessity to take an operation into account. Following his feelings, an intervention would be nothing but stress. Perhaps the newly reached vision together with his extraordinarily developed touch, hearing and taste would give him the total insight. He finds this idea quite bizarre.8
Much further than Kahawatte goes Isaac Lidsky, the CEO of a great U.S. enterprise. At the beginning of a TED Talk, Lidsky exposes five assumptions about his person asking the public to reflect which ones are true and which ones are invented.9 The fourth assumption is: ‘I lost my sight caused by a rare, genetically motivated eye disease.’ As Lidsky shows no signs of blindness—he opens his blind person’s cane only later on—many of the participants are convinced that he could not be blind. Already this beginning of his talk proves the exceptional attitude of Lidsky toward his stroke of fate.
When he was diagnosed with a genetically caused eye disease for which no promising therapy existed, he was twelve years old. About ten years passed until he got totally blind. That delay gave him time to reflect on what sight really means. For most people seeing is immediate and effortless. You open your eyes and you see the surrounding world. To see means to believe; it is equated with the truth or with reality. Many experts trace this back to the fact that the evolution has predestined us to give the priority to seeing. Encyclopedias of anatomy indicate that about 70 % of our ordinary perception is based on vision. That is right, of course, as long as you do not question these findings. Seeing is not everything. You can deduce this, as mentioned, from the fact that the brain of people born blind partly changes its functions. With me, too, parts of the neural network assumed functions which otherwise were reserved for eyesight.
Through the years, Lidsky stated that what we see is not the universal truth; it is not the objective reality. It corresponds instead to a unique and personal virtual reality constructed in an extraordinary way by our brain. From Lidsky’s point of view, seeing is an illusion that was destructed by and by as his sight diminished. Everybody is creating his own reality. To confirm his convictions, he mentions Helen Keller, the deafblind American civil-rights activist. She writes that much worse than blindness is the lack of vision. By the way, the quote from The Little Prince of Saint-Exupéry chosen as title for this chapter continues as you know: What is essential is invisible to the eye.
There is no doubt that Lidsky is an exception. He does not consider the loss of his eyesight as a restriction; on the contrary, to him, his blindness constitutes a personal enrichment. This attitude can be explained by the fact that his psychological immune system is extremely well developed.10 It protects an individual against the experience of negative emotions. Unconsciously, information gets ignored, transformed and reconstructed so that a disastrous event might seem more bearable for the person concerned. As visual feedback does not reach Lidsky, his environment, especially his staff members, are obliged to give him verbal feedback. His disability forces them to say what they think and to avoid ambiguity. He communicates with them on a deeper level, and above all: His team knows that their point of view really counts.
Considering the cases of Kahawatte and Lidsky which are representative for many other visually impaired people, you can state that surgery does only make sense when there is a psychological strain. The wish to gain sight, however, is not very strong with many persons born blind. Of course, there are also things that blind people would like to see. Mike May, who lost his eyesight in an accident as a child, missed nothing in his life as a blind man.11 Nevertheless, he would have liked to see a landscape panorama and especially beautiful women with his own eyes. When he is successfully operated on in the middle of his life—it is a stem cell transplantation—, he has difficulties with facial recognition and perspective vision, which apparently still exist.12 As we will see below, others have even more serious problems with their newly acquired sense of sight. In some cases, successful surgery can even have highly negative consequences, including suicide.
The spectrum would not be complete, if I omitted another example of how a blind person dealt with his or her blindness. Saliya Kahawatte, as we have seen, takes his severe visual impairment without excitement and shapes his life following his conceptions. Isaac Lidsky considers his blindness even as gain as it permits him a deeper communication with his environment, especially in his professional life. He even seems to take pleasure in the stroke of fate that hit him unexpectedly. Some people, furthermore, have a special talent to learn from setbacks and take them as motivation to outreach for greater achievement. We can draw the conclusion that they learn from their mistakes. They surpass themselves. Without doubt there are people with such a growth-mindset not only among sighted, but also among blind persons.13
Another interesting example which I got to know later on is Andy Holzer, an Austrian born blind, who conquered the seven highest mountains in the world since the turn of the millennium. Already as a child he dreamed to climb Mount Everest someday, what by then no blind person had succeeded in doing. In 2014 he and his team were forced to abandon the ascent because of an avalanche accident. In the following year, Holzer had to finish a new attempt early because of a catastrophic earthquake. Somebody might assume that Holzer interpreted these failures as a sign to desist from tempting the fate. Far from it! On May 21, 2017 Holzer succeeded with two partners in ascending Everest up to the summit. Asking him about his perseverance you will discover that it was exactly the setbacks which encouraged him to insist. The account of his adventures is entitled: My Everest.14 With this title, he underlines that he has not simply climbed Mount Everest as many others before him. It is the particular challenge that was associated for him with the ascent. The reader of his book gets the impression that he considers setbacks to be part of everything—they seem to inspire him.
For myself, I was and I am far away from such extraordinary, admirable behavior. But at least I began to take surgery into account. I had enough time to weigh the pros and cons. Italian friends draw our attention to a Russian surgeon who operated near Milano. We decided to consult him in any case. After intense examinations he came to the conclusion that my chances of success were about fifty fifty. For that reason, he advised against the intervention. In case of failure it could be that I descended in complete darkness.
Quite often sighted people imagine that the world of a blind person is completely dark. But that is rarely the case. Nevertheless, only few people ask if a blind person sees anything and if so, what he or she is able to see. This is another proof for the awkwardness mentioned by Kahawatte that many sighted persons display in contact with the blind or visually impaired.
This is the main reason why I still remember the following conversation. At the beginning of our friendship Alina, the cousin of a schoolmate, asked me:
“What do you really see?”
I thought for a moment how to explain it to her, and then I said:
“My vision is quite blurred, as through dense fog. My world isn’t completely dark, but I don’t see colors. For me distance begins after an inch. I don’t perceive any objects that are further away.”
“So, you are very short-sighted. About how many diopters?”
I liked this concrete question very much. I would have been angry at an expression of compassion, surely without showing it.
“About 15 diopters. The right eye is somewhat more, the left a bit less.”
“I have heard that very short-sighted persons often suffer from cataract.”
“Yes, I was born with it; and there are some smaller malformations I’m not quite informed about.”
The eye cataract often made me see double images or a halation around the objects. Beyond that, I had great problems with spatial orientation and distances, but I was able to orient myself roughly. I tried to find positive aspects in all that. Then I saw the moon just with a light around it two or three times: ‘Gute Monde, ihr geht so stille …!’ (‘Good moons, you are going so quietly…!’)
2 Best of Elvis
Tactile navigation—the kinesthetic moving/touching of the body—is the total embodied awareness of a body in an environment. Knowledge is made corporeal with the sense of touch replacing that of sight as the primary mode of data gathering.
Neil Lewis
Touch comes before sight, before speech. It is the first language and the last, and it always tells the truth.
Margaret Atwood, The Blind Assassin
“Cecilia! Cecilia!”15 Someone shouted my name from the opposite platform. I immediately recognized David by his voice even though we had not been in touch for many years. Just in this moment my train arrived. I had not even the time to call out to him my email address.
Among my schoolmates, I preferred David for many reasons. Two years older than me, he was preparing for the Abitur, the university-entrance diploma at the end of secondary school. Whenever possible, he accompanied me to school. He usually was waiting for me in front of his parents’ house. In order to facilitate my orientation, he talked to me from a distance. But he never picked me up at my home. Later on, I understood that he did not want to limit my independence where it was not necessary. Where I could arrive on my own, he let me do so. At the beginning, he pointed out to me the greatest obstacles on our more than two kilometers long way to school. “You have to be careful here! They have not yet mended the pavement!” As time went by, he limited his hints more and more. Above all, he never made me feel helpless. On the contrary, he invited me to try out some little experiments. How proud I was, when I could take two stair steps at once, first upwards and then even downwards!
I considered it another merit of David that he never touched me as most others did. Under the pretext of helping me, they took me by my hand, touched my arm or grabbed me by the hips. They did not notice my reluctance. Perhaps I did not show my discomfort clearly enough because all in all I had to be grateful for any kind of help. Probably, I myself was the cause of the unwanted physical contact. I always felt the need to explore everyone and everything by touch as most blind and visually impaired persons do. Furthermore, you cannot suppress touch which makes you feel things and persons around you, but also your own body.
Although I knew David quite well, I only had a vague idea of his appearance. Of course, I asked my male and female friends about it. I always invited them to describe the persons in my environment, above all the boys. “You know, he looks really great, tall and slim, with dark curls and a fitting face,” Alina told me about her cousin. Somehow, I was able to make sense of this description.
From the past years a memorable afternoon in David’s apartment came often to my mind. It was the beginning of the hype around Elvis Presley. As with most of us, I liked his songs. But I did not manage to imitate the swing of his hips because the descriptions of my classmates and friends remained too vague. I had already difficulties with the hula-hoops that came into fashion at that time. Finally, I managed to move it around my hips. But there was the hoop. When it fell down, I had to keep on trying.
I told David about my wish to imitate Elvis’ hip swing: “You know, they don’t describe it exactly enough. What does that mean: one hip up, meanwhile the other one goes down and you lift the respective knee simultaneously and move it inwards?” Impossible to imagine if you had not seen it. One of Elvis’ managers—and he was able to see—is reported to have said: “I don’t know how you do it, but continue to do so!”
On our way home, David said to me one day: “If you want, you can come upstairs with me. I’ll show you how to do it.” That was an offer! David’s parents were both at work. We were alone in the apartment and could turn up the record player as loud as we wanted. Above all, I was sure that David never would have done anything against my will. But even today I don’t know if I would not have enjoyed it. At the time, I was almost seventeen years old. And, above all, body contact was much more important for me than for people in possession of their eyesight.
So, we went upstairs to David’s apartment. As soon as he opened the door, I heard the chirping of birds.
“Robins in a cage, how awful! Why did you never tell me about it?”
“How do you know that they’re robins?”
“My grandfather taught me during our walks. As I could not see the birds, I should at least recognize them by their chirping.”
“That’s fantastic! Yes, they’re robins, but they are not ours. We only have to care about them. A friend of my mother is on vacation.”
We drank a Coke. Then David put the first record on the player. I immediately recognized the sounds of Love me tender.
“Why not Jailhouse Rock?” I wanted to know.
“It is much too fast! We have to practice first. We’ll improve bit by bit.”
David was following a plan and that was a good thing!
After a few beats David took my hands and put them on his hips. With care, he moved them slowly up and down. Then he put my hands on his knees.
“When you move your right hip up, you bend your left leg inwards.”
“What does that mean: bend inwards?”
“You move it to the middle and bend it slightly. You have to put your foot on top. Did anybody ever tell you that Elvis always wears white socks to emphasize the position?”
No one had ever told me that before, why should they? I tried to imagine the movement. After a while it worked somehow. But it wasn’t easy to adapt the whole process to the rhythm of the music. David never got tired of making the same movements over and over again. Finally, I was ready.
“I think I can try it now.”
Love Me Tender sounded for the fifth time. David put his hands on my hips. Up and down, turning his knees alternately inwards.
When I could do it to David’s satisfaction, we increased the speed with Don’t Be Cruel. Then Teddy Bear followed. The others would be amazed when they saw how well I was able to do it now.
“So, when’s Jailhouse Rock coming?”
“First we have to perfect the whole thing. But soon we will.”
In my eyes David was the perfect teacher. I had told him that before. But he fended me off.
“If you mean to say that I’m quite capable of relating to others, then perhaps you’re right. … but I never want to be a teacher.”
“Why not? The students would learn a lot from you. You know what’s important.”
“That may be. But in a classroom, you can’t respond to each individual student in the way you need to. Besides, there are the curricula. Or do you learn what you really want to learn from Mrs. Siebert and Mr. Dahlmann? And do they teach it the way that suits you best?”
I hadn’t really thought about it. All in all, I was very satisfied with my teachers. They had never tried to send me to a school for disabled. Special schools for visually impaired or blind students like today did not exist at that time.16 Moreover, blindness was not as much of a problem in the post-war years as it is today, because many soldiers had returned home blind from the battles.
I still clearly remember Mrs. Melzer, my very first teacher in primary school. She had been reactivated for teaching at the age of 70, because there were hardly any teachers immediately after the war. Of course, she had heard about my visual impairment, but she never said a word about it. She always found time to spell the new words with her index finger in my hand, so that I gradually got an idea of the writing. When she came along and took my wrist, I knew that I had to open my hand. Then she wrote the respective letter with her finger or a tiny stick in the palm of my hand. And she urged Renate, a neighbor’s child, to spell and read out all the new words to me several times. In return, I helped Renate with the arithmetic problems. Like most visually impaired people, I could imagine abstract things quite well.
Mrs. Melzer—by the way, she insisted that we addressed her as ‘Fräulein’—was quite modern from the point of view of that time. There were almost no schoolbooks. Whenever possible, she did not content herself with descriptions or blackboard drawings, but brought a wide variety of objects into the classroom. While the others drew the objects in their notebooks and wrote the corresponding word next to them, I was allowed to touch, move back and forth and sometimes even smell the objects in peace!