Down on Art? Fine Arts Experiments with Tim
Susanne Pohl-Zucker
“We are entitled to our own definitions of the worlds we have in common … and try out new combinations with key words unlocking power…”
From Dreamweavers by Marj Evasco.
“Dreamweavers” has always been one of my favorite poems. When my twins were born, the poem spoke to me in powerful ways, of denied access but also of new definitions. Tim, my son, has Down syndrome and access to language, both spoken and written, can be challenging. Historically, prejudice long prevented assistance. Only in recent decades have early intervention programs been instituted to support speech development and reading and writing skills. I want to share a few reflections on German attitudes towards Down syndrome and conclude with a brief description of how Tim used language to create his own meanings when I showed him “Dreamweavers.”
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When my twins were born, joy was accompanied with uncertainty when Tim was diagnosed with Down syndrome. I had not met many people with Down syndrome and did not know what to expect. There were bits and pieces of knowledge in my head: I knew there were special schools and sheltered work places. But I knew nothing about early intervention programs or how he would be able to learn things. I threw myself into research and also grew interested in the history of special education in Germany. I found out a lot that was depressing. When special education started to develop during the course of the nineteenth and early part of the twentieth century, people with Down syndrome were mostly regarded as uneducable. During national socialism’s brutal regime, they became targets of Euthanasia programs. After 1945, there was at first little focus on education and rehabilitation, and children with Down syndrome continued to be excluded from the school system.
In the late 1950s, parents began to fight for the establishment of special schools and sheltered work spaces for their children. Attitudes changed slowly, however. Cultural prejudices based on a rejection of physical and cognitive differences prevailed. Differences in language development also played an important role. A good example of such attitudes is the commentary of a news anchor in a TV show from 1969. It showed a group of people with Down syndrome with their teacher. The news anchor said: “It is hard to look at them, one feels uncomfortable in their society, their faces, their helplessness, their stammering.”¹ He, like many others, assumed that difficulties in pronouncing words or in speaking in complete sentences signified an inability to learn and to communicate meaningfully. There were also few efforts to teach children with Down syndrome to read or write. Even in the special schools that were instituted, most teachers assumed that children with Down syndrome could only learn practical skills. Most medical experts and pedagogues even believed that teaching reading and writing skills or basic math would be inappropriate and too taxing. Heinz Bach, a professor of pedagogy, even maintained that reading and writing would actually threaten the development of children with Down syndrome. It would be frustrating for them and they could only learn to read “mechanically” without really understanding what they were reading.
There were dissenting opinions during the 1960s. Some doctors advocated teaching reading and writing; for example Christof Wunderlich and Franz Schmid. Wunderlich, a doctor based in Munich, was interested in methods to develop the cognitive abilities of children with Down syndrome and maintained that it was possible for most of them to learn to read and to write. He was a tireless advocate for the development of special teaching methods and offered parents advise and assistance in his private practice. Schmid, a physician from the German town of Aschaffenburg also advocated that children with Down syndrome could and should be taught how to read and write. But progressive as the Doctors’ pedagogical methods were, their treatments rested on the assumption that medical treatment was necessary to counteract the effects of the extra chromosome. They proposed unconventional methods. They offered live cell therapy to stimulate the brains of their patients, maintaining that it made them livelier and more intelligent. Schmid even argued that his cells would change their physiognomy so that typical Down syndrome traits would disappear. Due to these physical changes, he maintained, the children’s IQ would rise and learning would become easier. Despite the prejudices that informed these positions, these methods remained popular. ²
During the 1980s, however, fresh cell therapy lost its attractiveness. Health organisations warned of side effects and insurance companies refused to cover the high costs. Scientific studies could not prove the therapy’s effectiveness. But a decisive turning point was the separation between pedagogy and medicine and the development of progressive teaching methods for children with cognitive disabilities. These methods were initially mostly invented and used in other countries but eventually also influenced the German school system. Advocates for disability rights began to fight for inclusion and protested against a medical model that sought only to correct or fix impairments.
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At the time of Tim’s birth, when I researched the history of pedagogy and the teaching methods that had finally become available, I felt relief that there was a path to leave discriminatory practices behind. But my head was also spinning; the task seemed daunting. There were so many different methods, so many daily exercises that one could go through. Since Tim had a severe congenital heart defect and needed surgery, it took a while before he was stable enough to participate in any of these exercise programs. Everything was slow, his recovery, his motor skill development. His sister took the lead, the first to talk and walk. But he watched and imitated and did the same things as she, even if it seemed to happen in slow motion. We could watch developmental stages that I had not even noticed Lisa was going through. It was fascinating to observe how their skills unfolded at different speeds. And he got there, walking, talking, having fun. He did not have Lisa’s absorbing curiosity for everything in sight, but when something interested him, he was really focused.
At school Tim profited from progressive teaching methods, although numbers remain a puzzle. They seem to be floating around in his head in a completely arbitrary manner and how they might be arranged, in which order, appears to be shrouded in mystery. But he enjoyed learning how to read and to write. Early reading programs also assisted his speech development. He learned signs for individual words and to match words with picture cards. Like many kids and adults with Down syndrome, Tim is an extremely visual person. Memorizing signs and the image of a word card helped him to recall the spoken word. Soon, he spoke his first sentences, mixing signs and spoken words, until the signs finally disappeared. By then he had memorized many words as pictures which helped him to learn to read. Writing came next and here again, Tim’s visual memory served him well, although he developed his own style of writing. He cares neither about upper and lower cases nor about interpunctuation. He likes to write letters which consist of one long sentence, but has fun writing down the words. So much so that when he likes a word or a turn of phrase he may repeat it several times for good measure.
Although Tim enjoys reading what interests him, he prefers his reading material to be short and likes to read out loud. A book without pictures seems kind of sad to him, and he does not really have much use for it. In general, he retains what he learns most if there are visual aids, and he will remember a story best, if it has good pictures. Better still is a movie or a play. If a story is acted out for him, Tim will memorize key sentences, words and phrases of the story.
When Tim speaks, he is a bricoleur. He collects and memorizes words and phrases he has heard and that have stirred something inside him: a line from a song, a fairytale, a Disney movie. He tries to express what he feels by using these lines. Last week, he was scared of staying home alone. He didn’t say: “Don’t go. I don’t want to be alone.“ He said: “My heart is a ghost town.” It is a line from a popular song he likes. The singer describes feelings of sadness and emptiness after her boyfriend left her. Tim didn’t catch this meaning but he understood the emotions of fear and loneliness. Therefore he uses this expression when he feels afraid.
Looking back at the day of his birth, I want to tell my old self not to worry so much. Tim has grown and learned like everyone else. He found his own way and his own speed. He makes and orders his world like we all do. And watching him happily go about his day is fun and enriching.
I would love Tim to continue to grow and learn and experience new things. But access to learning experiences for people with Down syndrome remain controversial in Germany, despite overall changes in attitudes during the past decades. Parents still fight for their kids’ rights to have access to life-long learning. When school is over, most adults with Down syndrome work in sheltered workshops, but there are also many families who want their kids to be integrated into the mainstream labour market. A law has been passed by the German Parliament in 2009 that mandates schools, universities and employers to find ways to include people with disabilities and to offer assistance as needed. Efforts have been made, but there is still a long way to go. There are monetary interests involved. Who decides which intervention programs will be paid for? What kind of work assistance will be funded after school? When it is a question of allocating money, old assumptions about cognitive limitations still play an important role.
Such assumptions also often guide access to learning that goes beyond basic reading and writing skills. It depends on the teacher, but often children with Down syndrome will have little contact with history, literature or the fine arts. Often enough, assumptions prevail that teaching the arts would be taxing, pose excessive demands and would eventually fail due to a limited command of language. Yet it is intriguing to think of ways to facilitate access towards the arts as a teacher. Visual aids or role play can help impart information. At a private learning centre where I work, history lessons rely on drama techniques so that content has an emotional impact and can thus be more easily retained. But it is not only about teaching content; there are also many ways to help foster an appreciation of the arts so that paintings or poems become emotionally meaningful. On a recent visit to a small museum in my hometown, Tim showed me how paintings could become significant for him.
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Tim likes to take trips to the museum with me. The museum used to have an interactive room for kids. There were, for example, costumes so that kids could dress like people in a painting or they could arrange a variety of objects to create their own three dimensional still lifes. Tim also liked the computer that gave you a virtual tour of the museum with attached multiple choice questions. Tim loved it all and never tired of dressing up and making yet another still life.
But Covid changed all that. When the museum reopened after prolonged lockdowns, the interactive room remained closed. I tried going to other rooms with Tim. First, we went through the Modern Art collection. I thought he would have fun with colours and abstract shapes. Tim looked at the paintings politely, but I could tell that they did not touch anything inside him. We went to a different exhibit, a room with paintings from the nineteenth century. I far preferred the modern art to these depictions of landscapes and smiling well-dressed men and women.
But Tim’s face lit up. Here, he saw stories. I tried using simple language to teach him something about the difference between abstract and representational art. But he interrupted me. He had found a painting called “The Dying Child” by a nineteenth-century German painter. It depicted a grieving couple sitting next to the crib with their child. Another woman was there with them, with clasped hands and a sad expression on her face. I was concerned that Tim would catch the meaning and become sad as well. But he was excited and began to talk about the painting. Conversations between me and Tim often unfold like this: he throws out a word rather than a sentence, and I try to find an associated word and perhaps a whole phrase will emerge.
Now looking at the painting, Tim said: “Drink me!” I asked: “Alice?” He had seen a bottle on a small stool which reminded him of Lewis Carroll’s story “Alice in Wonderland.” When Alice enters Wonderland, she drinks out of a bottle labeled “Drink me.” She then becomes quite small. When he realized that I had caught his reference, Tim said: “Yes, there are Alice and Aurora.” It took me a second, but then I noticed he was looking at a spinning wheel and a spindle in a corner of the painting. He had thought about the fairy tale “Sleeping Beauty” where the prick of a spindle puts the heroine to sleep for a hundred years. And of course, it was the Disney movie that came to his mind where this heroine’s name is Aurora. Once he had discovered Alice and Aurora, there was no stopping him. We played: “Find the Fairy tales” and suddenly the paintings which had seemed rather boring to me, acquired a new fascination. Since he loves the Harry Potter movies and is entranced by the idea that images of people can come alive and leave their frames to talk to each other, I asked him who might visit whom. Soon there was Snow White calling out to Little Red Riding Hood and Alice dancing on the roofs of a building that reminded Tim of a palace in the Disney movie Aladdin.
Then he looked at the painting called “Guardian Angel” which depicts a child sleeping near a creek in the woods. There is a snake, apparently threatening to bite the child. But a pretty looking young woman in a blue dress with wings folds her arms protectively around the child. Tim did not see her as an angel but as a fairy. But the dark trees of the forest made him think of the fairy tale “Hansel and Gretel” where a boy and a girl get lost in the woods and are then threatened by a cannibalistic witch. The dark forest in the picture was the witch’s forest and the fairy protected the child from the witch. The snake was sent by the witch but had no chance against the fairy. Tim named the painting “Guardian Fairy” which seemed close enough. Back home, Tim looked at his favorite fairytale picture books. He then did what he always does when he needs to process information: acting it out with a long monologue and appropriate gestures. So he played the witch in Hansel and Gretel, but now there was a snake in it and Alice suddenly was taking care of a child in a crib.
The paintings acquired meaning for him because he associated them with characters and stories that he loves. And they inspired him to change familiar stories and thus brought new impulses to his routines.
How would Tim read a poem, I wondered? It turned out that he has a similar method. He came in my room one day. He likes to keep his things in order and wanted to help me organize my room. He started to put books on the shelves, and he picked up Marj’s beautiful anthology “Dreamweavers.” Tim learns a bit of English at school and likes to memorize new words. The different sounds of another language fascinate him, and he wanted to look at the book with the English title. He opened it, and I showed him the poem “Dreamweavers” that gave the book its title. Tim liked it instantly because he knew a few of the nouns and verbs that appear in the first half of the poem.
earth house (stay)
water well (carry)
fire stove (tend)
air song (sigh)
ether dream (die)
He noticed that they reappear later in a different order. He asked me: “Magic spell?” He loves stories about magic, especially if they contain lots of spells that repeat and rearrange words. I found this association fitting, since to me the poem is about the magic of words and meanings and the power that can be released if you rearrange and recombine them. I tried to tell him that it was about women working magic with words, and Tim said: “Like me.” He meant that he likes to pretend he is a good and powerful witch. He likes magic and has always thought of himself as a girl or a woman. We do not know whether this is because he has a twin sister or because his favorite heroines are female or whether this is something he deeply feels to be true. The poem for him was thus about a magic spell for a woman and it resonated with his favorite stories. Now he wanted to make his own magic spell with the words. We took index cards and wrote on each card a noun or a verb that appears in the poem. We wrote the words in German. Tim stumbled over the meaning of “ether” but we settled for “Himmel,” which means “sky” or “heaven.” He arranged the index cards on the carpet and drew ten cards. This is how he put them together, trying to imitate Marj’s format in the poem:
fire tend
earth
water die
song air carry
dream sky/heaven
“What are you thinking of?” I asked him. Tim said: “Ronia.” I looked at him perplexed. But it was all perfectly clear to him. “Ronia, the robber’s daughter” is a story for children, quite well-known in Germany. The story is by Astrid Lindgren, a Swedish writer. Ronia’s father is the captain of a band of robbers, and they all live in a robber’s castle deep in the forest. When she is old enough to leave the castle, she has many adventures in the woods with her friend Birk, the son of another robber.
Tim told me what the collage of words meant to him. It made him imagine a possible Ronia scene. It is not in the book, but it is composed of plot elements that appear in the novel. This is what he thought of: Ronia and Birk sit in a cave in the woods, making a fire. But Ronia is afraid; she thinks about how she had once stumbled over a hole in the ground. Her foot got stuck in the hole and small trolls who live under the earth held on to it. That meant she could not run away when malevolent flying creatures attacked her from the air. Only in the last moment did she manage to free herself. She jumped in the nearby river to escape the flying menaces, but they kept attacking her. She thought they would eat her alive. Her lucky rescue left her afraid. But when she sits at the fire, the air carries her mother’s song to her: a lullaby she sang for Ronia when she was small. And in her dreams, an old robber who has died but has always been her friend smiles down at Ronia from heaven. “So,” I said to Tim, after processing all this, “what is the poem about then?“ “Courage” he said. Tim had packed the story parts that appealed to him the most into his combination of Marj‘s words. It made me smile, because somehow, in a special Tim manner, Marj’s poem has come home to him. I know too that when he is scared next time, it will be enough to say: “Ronia” and “poem” and he will want to be brave like Ronia. There are so many ways to unlock power with words.
¹ See Monitor: Mongoloide Kinder, WDR, 28.4.1969
² See Susanne Pohl-Zucker, Diagnostisch-therapeutische Grenzziehungen. Die Zelltherapie bei Kindern mit Down-Syndrom im medizinischen Diskurs der Bundesrepublik Deutschland in den 1960/70er Jahren, in: E. Bösl, A. Klein, A. Waldschmidt, Disability History. Konstruktionen von Behinderung in der Geschichte, Bielefeld, 2010, p. 85-104.
