Photo: Torben Rieckmann

For a long time, people were convinced that Trisomy 21 was a hereditary disease. Only relatively late - in the 1960s - did the French geneticist Jérôme Lejeune discover that the tripling of the 21st chromosome was a spontaneous genetic mutation. Since then, countless research dollars have been spent trying to eliminate this so-called genetic defect. But Prof. Dr. André Frank Zimpel and PhD student Torben Rieckmann are researching a different question: they want to find out how to improve the living conditions in our society for people with trisomy 21. In this interview, the researchers from the University of Hamburg talk about their current research, the importance of math skills for a self-determined life, and a tablet app called Mathildr (pronounced “Mathilda”).

Your doctoral project, which is supported by the Software AG Foundation, is entitled “Improving the Mathematical Learning Success of People with Trisomy 21.” What is the scientific research question that you are trying to answer, and what is your methodology?

Rieckmann: In a study, we found out that people with trisomy 21 have an attention span of two units. People without trisomy 21, in contrast, are usually able to simultaneously perceive and process four units of perceived information in their environment in one quarter of a second. My research project therefore asks the question, how do we design mathematics lessons for people with a reduced scope of attention? To this end, I develop teaching materials - together with people with trisomy 21 - and subsequently scientifically test and evaluate them.

Zimpel: The hypothesis is that people with trisomy 21 would be better off if society were to meet them where they are at. But since this doesn't happen, most of them struggle with math. There are other areas of society where so-called disadvantage compensation is successful, and it is because we have created barrier-free conditions. For example, we know that guidance systems and braille help a blind person. If a person is deaf, we need sign language interpreters. We want to find that crucial point that allows barrier-free learning of mathematical content for people with trisomy 21. If we succeed, it will also provide us with information about how we can adapt other areas of society so that people with trisomy 21 can lead a self-determined, fully participatory life.

LEARNING SUCCESS LEADS TO A SELF-DETERMINED LIFE

What does math have to do with a self-determined life?

Rieckmann: It's a very important skill. Inclusivity activist Andrea Halder has shown, for example, that the ability to handle numbers significantly increase the dignity of one's everyday life. She once worked as a waitress in a literary café and found that although she was allowed to take and serve the orders, her colleagues handled the customers' payments. As a result, she never got to keep the tip - or the recognition that she wanted.

What was the motivation for your project, and what guides you in your work?

Rieckmann: First of all, I find the situation in the schools unfair. Pupils with trisomy 21 are generally expected to work with the same teaching materials and methods as their classmates without trisomy 21. At most, the tasks are broken down into smaller steps or printed out bigger. This, however, does not take into account the fact that students with trisomy 21 have a smaller scope of attention than other children.

Zimpel: This is the paradox that people with with trisomy 21 are often confronted with, namely that processes are merely simplified. Of course, simple language can make it easier to understand complex texts. What is often overlooked, however, is that what people with trisomy 21 really profit from - because of their lower scope of attenion - is abstraction. Often, the apparent simplification of the world actually makes things less comprehensible for them. That's why we don't believe that using simplified language means that a something is inclusive; it is only the first step, and the real work remains.

Rieckmann: During the trisomy 21 study, we also set up an information centre at the university. We are receiving more and more inquiries from parents of children with trisomy 21 who would like to work with us. I've provided individual math lessons for a lot of children with Trisomy 21 and found that they are certainly able to be successful learners. I wanted to test these successful learning strategies scientifically and make the methods reproducable so that they are accessible to others, as well.

AN APP BY PEOPLE WITH TRISOMY 22, FOR PEOPLE WIT TRISOMY 21

So you went from being a researcher to being an app developer?

Rieckmann: I first developed a system in which dots are arranged according to a certain scheme. I first presented this on cardboard, and later came a few prototypes made of wood. But a tablet app is ideal because it can flexibly display different quantities, and can be programmed to give tips. We also found that people with Trisomy 21 find it easier to swipe or touch than to write or paint. Another advantage of the app is that it can be easily distributed or shared. To access the learning material, you just download the app from one of the various app stores.

Zimpel: In our study, we observed that people with trisomy 21 sort problems into two-part bundles. The app makes use of this by displaying pairs of cherries. It's a method that was developed not just for these individuals, but by them. I think that's very important. Ultimately, it was observations made during conversations with individuals that led to the app's development. You could say that the app's first developers were people with trisomy 21, and Torben Rieckmann developed it further.

PLAYFUL LEARNING WITH MATHILDR

Does playful learning also play a role in the app and research?

Rieckmann: Playful learning should always play a role. We observe again and again that a game always includes a challenge, if you look at the child's behaviour. One can see the theory of play developed by Prof. Zimpel as a tool that educators can work with very effectively. Ideally, the children don't see the lessons as “learning” or “cramming.”

Zimpel: A finding of the Montessori as well as the Waldorf pedagogy is that a learning content that is offered too early or too late, misses its effect. That's why this theory of play is so important to us, because it allows us to determine exactly when we offer different learning content. The children should neither be overwhelmed nor under-challenged. If the timing is right, you can harnass the power of learners' enthusiasm.

What is it like to work with the app? Are there math problems that have to be solved?

Rieckmann: First of all we have to talk about the quantity pictures. For example, the number five might be verbalized by learners with trisomy 21 as “pair of cherries, pair of cherries, cherry.” The pictured pair of cherries corresponds to the scope of attention of two. If the learner recognizes the pictures, the next step is to count them. One of many possibilities would be, for example, to first display four red cherries, and then to add two yellow cherries. The goal is that the children do not start recounting the cherries, but rather understand that they already had two pairs of charries, and now there is another pair added, so that in the end they have three pairs, or six cherries.

WHAT WE CAN LEARN FROM CHILDREN WITH TRISOMY 21

What can we learn from children with trisomy 21?

Zimpel: Above all, we can learn that intelligence is not innate. Intelligence depends on intrinsic motivation. People with trisomy 21 have poor preconditions for learning, yet many maintain their intrinsic motivation for it; a few even graduate from university. I find that incredibly motivating. On the other hand, intelligence depends on trust. If a person does not trust his environment and does not believe that his accomplishments and difficulties will be acknowledged and respected, then development is impossible.