In our society, people with Down’s syndrome are ignored, as if they don’t exist. The Warsaw-based theatre Teatr 21, where the majority of actors are people with Down’s syndrome and autism, wants to change that. Mateusz Demski talks to the theatre’s founder, Justyna Sobczyk.
Mateusz Demski: “This is a historic moment,” you said when you received, together with Daniel Krajewski, the Polityka Passport Award for Teatr 21 (T21).
Justyna Sobczyk: And what is more, I think it is a historic moment on many levels. For the first time in history, people with disabilities receive such a prestigious award. But apart from distinction and recognition, this award means so much more. It encourages us to look critically at art and social reality and reflect on how people with disabilities fit within it. Where are they if we cannot see them? I like to say that at T21 we are not interested in what theatre can do with people with disabilities, but what people with disabilities can contribute to this field. What kind of themes, what kind of presence, what kind of bodies. And what can they do with audience members who, after all, hold certain beliefs.
I think that the Polityka Passport award ceremony – during which Daniel, an actor with Down’s syndrome, went on stage, collected the award and stood, as an equal, alongside the host – allowed us to realize how strongly, over the years, we’ve stuck to certain stereotypes and ways of thinking. It gave us hope that we can break free from them.
You speak about hope. Meanwhile, kids in schools keep insulting each other by calling each other a mongoloid, an idiot, a moron. The level of public debate in Poland isn’t that great, either. People still believe Down’s syndrome to be a disease.
It’s a common mistake. Down’s syndrome is not a disease – it is a syndrome, something you have before you are even born. It means that you have an extra chromosome in all the cells in your body. You cannot catch it. And yet, when we put on shows in schools, parents sometimes ask if their children are safe. Even now, after the Polityka Passport, I saw headlines in newspapers stating that I received the award alongside people “affected” or “suffering” from Down’s syndrome. But our actors do not suffer from this at all. It would appear that we’ve gotten rid of terms such as ‘cripple’, ‘imbecile’ or ‘idiot’, but unfortunately our language is still full of words that strip people with disabilities of dignity.
The current season at T21 is entitled ‘No One Left Behind’. We are interested in biodiversity, the fact that people in society have multiple competences. Among us there are some who manage large companies, some who lead an independent life, but there are also those with disabilities who are denied the right to independence and adulthood in this country. At T21, we want to bring the perspective of this group – Poland’s largest minority – to light in order to demonstrate their potential and increase their presence in public life.
The state should of course create a system that would allow everyone, including people with disabilities, to lead an independent and dignified existence, and allow them to participate in social and cultural life. I do not see this in Poland just yet, the change is taking place slowly, and this is why we consider our work in the theatre as an initiative that supports social change.
Why are these changes taking so long?
In general, change is always met with resistance; it is difficult on an individual level. Take, for example, changing our eating habits or recycling – when we have thrown everything into one bin for so many years, it is then difficult to change this behaviour overnight. These are obviously examples from other areas, but they demonstrate that changing a social habit is rather complicated. Charles Duhigg described this perfectly in his book The Power of Habit, demonstrating how many small actions it takes to change a social habit. He mentions, for example, US history – African Americans had to stand or sit at the back on public transport. This changed eventually, but the very process of change was accompanied by protests, a fight for representation and visibility in public space.
The first person with Down’s syndrome to appear in the public eye in Poland was an actor from your theatre: Piotr Swend. For many years, he depicted Maciek in the Klan TV series. How do you see his role in exploring the issue of people with disabilities?
It is safe to say that Piotr represented all people with Down’s syndrome in this country. I even know people who named their child Maciek in his honour [laughter]. I have never really watched Klan, but I am sure that his character – introduced into the eponymous family circle and integrated into the everyday life of the series’ protagonists – was extremely important. Many themes related to the needs of people with Down’s syndrome appeared in the series. For example, the desire of two adults wanting to get married, which in Poland requires a court order. Another actor from T21, Grzegorz Brand, took part in the first edition of the television show Down the Road. Suddenly it turned out that adults with disabilities have entered our homes for good. This programme – to the surprise of its producers – gained such popularity with the audience that it became an important element of the struggle for change. This demonstrates that we are all responsible for this visibility – TV, theatres, media, but also schools, community centres, and many other entities.
Together with the mothers of our actors, we wondered how things would change if, for example, hospitals or gynaecological offices would display photos of babies with Down’s syndrome among the photos of other newborns – in a typical situation, and not just on leaflets advertising the support of disability organizations.
But there are still no such photos yet.
In a way, we want to have these people around us, but not too close. Within our sight, but not in our own family; behind the glass, not even at the neighbour’s house, a few doors down, but preferably in another block of flats entirely. In Warsaw – the city that has the most to offer – there are places where people with disabilities are actually employed, but they rarely work front of house. More commonly, they are in the cloakroom, the kitchen, doing dishes – in spaces that hide their presence, confine them to the background.
You said that in addition to visibility, people with Down’s syndrome are also denied the right to independence.
There are some attempts to introduce innovations in the approach to independence of people with disabilities, but so far they only function on a limited scale, within projects. The most vivid example are supported-living flats, where people with disabilities get the opportunity to taste ‘adult life’. To me, this kind of support is superficial. It does not even take into account the fact that people with Down’s syndrome can have partners that they would like to live with. Flats are allocated according to gender, and they are under the constant care of specialists. This prohibits full independence, emancipation, and access to intimacy and the sphere of sex – i.e. the core of most people’s development.
On the other hand, I wonder whether they could just cut the umbilical cord and live on their own? Probably not. So, I can’t say that these arrangements are wrong, but the question is: what next? It seems to me that we should look for more systemic solutions that would help people with disabilities lead an adult life. Because the ‘typical’ experience of adulthood is currently available only to the chosen few.
To this day, I remember the time in Berlin when I went to do a postgraduate programme and an internship at the RambaZamba Theater. I clearly remember the day when a few actresses, adult women with Down’s syndrome, came to the rehearsal straight from the gynaecologist’s office, where they had received contraceptive injections. I remember that one of them was crying, she said that she would very much like to have a child... It stuck in my memory, as did the joyful, affectionate, loving couples who got together at the theatre. Among many other subjects, the topic of sex also came up in conversations between actors; it was a new experience for me. Besides, it was the first theatre where I finally saw people with Down’s syndrome employed in acting jobs.
Was that trip to Berlin a breakthrough for you?
I was lucky because it coincided with a wonderful, inspiring time for the German theatre scene: Frank Castorf, Christoph Schlingensief, Sasha Waltz, Thomas Ostermeier, the opportunity to watch performances and projects at the HAU (Hebbel am Ufer) theatre under the management of Matthias Lilienthal, the Rimini Protokoll group and other smaller collectives from the excellent school in Giessen that began to take over German theatre and introduce a new language into it.
But I think this process started much earlier. In fact, it started the day when I realized that theatre was the place for me. In high school, I found myself at the Toruń branch of the St. Brother Albert Foundation, where Andrzej Wojciechowski and a group of artists invited by him conducted occupational therapy workshops for people with disabilities. I had the impression that nobody there was judging anyone, there was no question of any norms, but you had the feeling that everyone’s uniqueness was respected. The motto was Don’t touch the artist’s hand and the artists were people with disabilities. This was addressed to us, to everyone who came there. Those were clearly established rules, quite opposed to rules that applied everywhere else. I liked that. I wanted to be there more than anywhere else! At university I chose to specialize in special education and I started to visit special schools as part of my classes.
During my studies, I also discovered the Therapy and Theatre festival in Łódź. There, I experienced many inspiring encounters and conversations with artists from all over the world. Their energy and directness had me enthralled. I started looking for that kind of energy in the world. But at the same time, I experienced several disgraceful, violent performances from Poland – realized under the guise of ‘loving thy neighbour’.
What was so despicable about them?
For example, the fact that the actors, people with disabilities, were made-up like clowns and danced to disco polo music [a genre of Polish-language pop dance music – ed. note]. But it was absolutely unacceptable in terms of content, too. The darkest image that always appears before my eyes was the performance of a theatre run by nuns. The action took place in Africa, actors with disabilities wore black tights over their heads and they played the natives. At one point, a missionary with a cross came on stage, and the actors began to walk around him on their knees. I was distraught. After the show, I wanted to run after these nuns and talk to them about it, but they immediately got on their tour bus and left. This event stuck with me so strongly that I was unable to write my MA thesis in theatre studies.
You decided to leave.
I couldn’t look at this kind of thing anymore, so I left. In Berlin, I continued my research. I wrote my MA thesis on the work of an actor with a disability. It was based on the case study of the RambaZamba Theater. I should mention that this wasn’t the only place of this kind in Berlin. There is also another strong stage there: the Theater Thikwa. Besides all that, Christoph Schlingensief was active at the time – a revolutionary artist who broke all conventions and together with the economically disadvantaged, refugees and people with disabilities, created incredible performances, very critical of the German reality. I think I happened upon the right time when a lot of groups and collectives appeared in Germany. They relied on the work of non-professional actors; their individual predispositions and the need to express themselves. And with all that, I returned to Warsaw.
You founded T21, whose actors (for 15 years now) are mainly people with Down’s syndrome and autism. What are the rehearsals like?
Our performances are the result of the work of the entire team of creators, artists and theatre researchers. Myself, Justyna Wielgus and Justyna Lipko-Konieczna form the core of the team. Wiktoria Siedlecka-Dorosz, Kuba Drzewiecki and Marceli Sulecki are also very close to these activities. All performances begin with a discussion. We toss around some issues that are important for our actors and in this way we design situations that allow for creative activities to take place. So there is no question of staging, the director does not distribute roles, we do not bring ready-made texts to rehearsals. The first part of the theatrical process is conversation and improvisation across many fields. The actors contribute intensely at this stage; they do not merely recreate scenes that we developed earlier.
Let’s take, for example, the play Clowns, or About a Family: Episode 3, where we touched upon the subject of supported living arrangements. We came up with the idea when some of our actors began to live in such apartments. Thanks to their experiences, acting improvisations, a careful and critical observation of the social situation, as well as the way we – people without disabilities – look at this issue, we created a performance that talks about the ways in which we create superficial inclusivity in Poland.
On stage, Barbara Lityńska delivers – as the president, with great difficulty – a bunch of difficult words and phrases: ‘participation’, ‘social inclusion’, ‘disadvantaged groups’. This shows how, as a society, we create an artificial language to describe the situation of people with disabilities. In another scene, a couple of actors with Down’s syndrome declare that they want a marital bed in their supported living flat. To which the president replies: “I hope that there won’t be any children [...] may God save us from that.” This again expresses our superficial openness to people with Down’s syndrome.
In what way is T21 a part of social change?
Recently, during a rehearsal, we watched a performance by a theatre from the Netherlands, which focused on the gender transition of one of its members. For the first time in their lives, our actors saw that transitioning is possible and they couldn’t believe that it is possible to talk about this on stage. Some of them considered it ‘abnormal’, thus replicating the thinking of their own parents.
We want to show the complexity of this world to our viewers, but we also want to talk to the actors about this – especially because, as our research shows, apart from transgender people, the most discriminated against groups in Poland are Jews and people with Down’s syndrome.
What changes would you expect from Poland in relation to your theatre?
We would certainly wish for more support and openness from officials or other people responsible for culture. Similar theatres have been operating for 40 years in France, almost as long in Sweden, Ireland and the Netherlands; they have their own headquarters and receive regular support from the city or the state. We even hear voices from the US saying that biodiversity in theatre is the norm. Actors with Down’s syndrome are being hired full-time. The slogan “Nothing about us without us”, which existed for a long time in the US, has become obsolete and has been replaced with: “Nothing without us.” The world is changing, we cannot pretend that it isn’t.
Still, we are aware that any change takes place gradually. We should start with the basics. For example, why are there so few children with disabilities taking part in classes at Polish community centres? Why is our world adjusted only to normatives – that is, all those who have everything? We’d like to reach people by raising awareness, show them that all these strategies of exclusivity are appalling and, what’s more, they are being implemented out of view. That is why we care so much about this minimum of stability.
What do you mean by that?
For 15 years we have operated without a permanent base, without a sense of security. There was a time when neither the crew nor the actors received remuneration for rehearsals. We are a foundation, we receive funding for various projects from the Ministry of Culture or the Culture Bureau, for the past year we have been working as a Social Cultural Institution – Inclusive Art Centre, and we received a grant from the city for the next three years. As an NGO, this is a comfortable position to be in. Within this budget, in addition to performances, we can organize discussions, workshops, enter into interaction with other entities, but this is just for the next two more years. It’s treading on thin ice, because we are investing a lot of work into creating a space that could significantly change the area of inclusive education and art in this country, while not knowing what will happen to us in the future. We don’t know what the people responsible for culture think about our work. I do hope that the Polityka Passport will open up the field for discussions and further plans, especially as our activities are in line with the strategy of the capital city of Warsaw.
Do you think anything in our approach to people with disabilities in public life will change over the next three years?
I very much hope that the ground for reflection on this subject will finally be found. All the more so now, during the pandemic, which has led to temporary closures and restrictions. After a few months, this state seems unbearable for us, brings a sense of unfairness and injustice, and yet for people with disabilities this is a permanent state. Looking at it this way, it might be easier to understand their need to work, to go out and be around people. Maybe we need to be outside our comfort zone to take the first step towards understanding and biodiversity. Then we will see that we are all connected, that we have a lot in common.
Parts of this interview have been edited and condensed for clarity and brevity.
Theatre educator. She graduated from Special Education Studies at the Nicolaus Copernicus University in Toruń and Theatre Studies at the Theatre Academy in Warsaw. She completed postgraduate studies in theatre pedagogy at the Berlin University of the Arts. Scholarship holder of the GFPS (Gemeinschaft für Wissenschaft und Kultur in Mittel- und Osteuropa) and DAAD (Deutscher Akademischer Austauschdienst). Founder of Teatr 21, a theatre group whose actors are mainly people with Down’s syndrome and autism. Winner of the 2021 Polityka Passport award.
Translated from the Polish by Joanna Figiel
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