No matter how much automation is introduced in our life by engineers, there will always be areas focused on empathy and human contact. One of such areas is inclusion, i.e., interaction between neurotypical people and people with developmental disabilities. We talked with those who were developing inclusion in Kazakhstan in order to understand why this area was so promising.
Manshuq
Inclusion and Arts
Katerina Dzvonik is one of the curators of the inclusive theatre laboratory Literal Action, where professional artists and people with developmental disabilities (Down syndrome and autism spectrum disorders) work together. We asked Katerina how they managed to organise their work and why artists with developmental disabilities were better improvisers.
“Our inclusive laboratory works as a horizontal theatre. This gives equal opportunities to all participants in the process. This applies to rehearsals, where any member of the laboratory, with or without developmental disabilities, can do what they want to do. It so happens that our artistic process is based on improvisation. Although improvisation might be complicated for many theatre professionals, it is eagerly implemented in our theatre, and actors with developmental disabilities feel enthusiastic about improvisation.
In Kazakhstan, people with developmental disabilities are often isolated from social interactions, they live a secluded life
This is why our artists with developmental disabilities have a unique view of the world, delicacy of feeling which is ideal for theatre. The less socialised a person is, the finer, better and more beautiful is their perception of artistic reality. When I work with professional artists, for example, I may hear them say: “Well, I don’t know, I haven’t a clue about what to do.” People with developmental disabilities do not have such thoughts. When we create an environment which is interesting for them, their imagination ignites and no further actions are required from us. They make such amazing things, which a professional actor cannot even think of. It is easy for them, and they do not even ask why or what for.”
Over three years, the Literal Action laboratory staged two large performances. The first one – the Tower of Babel – was staged by Boris Pavlovich, a director from Saint Petersburg, who had been initially a curator of the laboratory because of his long-term experience in inclusion. In spring 2021, the inclusive laboratory made the second performance – Toi –directed by Katerina Dzvonik.
Katerina Dzvonik:
“Our laboratory is not about diagnoses or special education interventions. This is very important to note. From the very beginning, we decided that this would be pure arts, “as is”. In the course of work, of course, we need to adapt somewhat to their specifics, but this comes naturally in the process of rehearsals. We do not focus on special education interventions, but we invite psychologists to support us during intensive work, when we are getting ready for a performance and rehearse every day for a month.
When we started working and getting to know the guys, we had a super simple exercise – to come on stage and let others to look at you. You just come and stand in front of the audience. This develops the skill of being in public, helps not to worry or to be shy. This is difficult and easy at the same time. It took our artists with developmental disabilities about a year to stop asking when they were allowed to exit.
They learned an important lesson: if you want something, just do it
This also demonstrates how they are treated and brought up in our society: they do not exert their will.
We were told that people with autism spectrum disorders did not have imagination or interest in anything. We were told that people with Down syndrome did not have abstract thinking. That’s not even remotely true! They could not joke if they did not have imagination or abstract thinking. We laugh a lot in our theatre, and this is a remarkable indicator. Everything depends on attitude: it is important to create such an environment, where people with special needs can prove themselves.”
The inclusive laboratory Literal Action is the only cultural project in Kazakhstan that pays salary to people with developmental disabilities. This was its primary aim to ensure that everyone in the laboratory have equal pay.
Katerina Dzvonik:
“I think that honesty is probably the main aspect of working with people with special needs. They easily feel deceit. I must say that our neurotypical artists have changed a lot. We all have changed. We have grown to sense truth (and this is very valuable for me in theatre). It is impossible to pretend, even to act in the conventional (generally accepted) meaning of acting, before these guys. This looks so unnatural that everything falls apart. You need to exist in a field of children’s curiosity together with these people. This is natural for people with developmental disabilities, but professional actors develop this quality through communication with them. It is not difficult; rather it is an interesting exploration we embark on in each rehearsal.
If you ask me how this all relates to theatre and why this sphere cannot be automated, I would say that it is all about a possibility of making mistakes. The thing is that mistakes are the most important and amazing element when we deal with sensory perception, such as music, fine arts and theatre.
Only humans can make mistakes. Machines cannot make them
When a person makes a mistake, it creates the very moment of truth when both the viewer and the content producer are in a common field of catharsis, for which, I believe, people go to theatre, cinema, concerts, and so on. People want to get a concentrate, an extract of their own life, and the artist becomes a conductor of some energy, which is then passed to the audience. This synergy works both ways. This is the coolest thing that can happen to us, and this can only be possible through face-to-face contact.”
Inclusion and Psychology
Alla Okisheva works for the Ray of Light Foundation, which helps people with autism spectrum disorders and other developmental disabilities. Together with her colleague Alyona Shevchenko, she worked with the Literal Action inclusive laboratory during preparations for performances.
Alla Okisheva:
“We conducted a study on inclusion for the theatre laboratory using the example of art therapy that takes place in the theatre. When preparing for the second performance, we had a slightly different goal: we wanted to see changes in each artist and how they happened. My colleague and I describe in a new study how the guys demonstrated various aspects: anxiety, behaviour in a team and personal transformation.
And we saw such changes! These changes become possible because people with special needs really begin to feel that they belong to the society
They receive salary, have their responsibilities and know that they are needed there. It is so interesting to watch the audience when they cannot tell who of the artists are people with developmental disabilities and who are professional actors. We just sit next to others in the theatre and hear people discussing it. All this is because changes do take place. Many of them become less anxious, they reach the level when we no longer talk about changes in their health and conditions, but about professional skills. A person has already grown to a certain level, and now he or she just needs to learn how to sing better, move more fluently or learn the rhythm. I believe that this is a great achievement. And I also think that people with developmental disabilities help us to blur the boundaries of normality. Looking at them, we begin to understand better that everyone has their own norm.”
In a conversation about inclusion, Alla noted that psychological support is often necessary not only for people with developmental disabilities, but also for their parents.
“When parents find out about their child’s diagnosis, they forget about themselves and literally shut themselves off from the world for five to ten years. They ignore their own needs, they live with this diagnosis and thoughts that they need to get their child out of this state. Thus they lose their own life and fail to realise that they need not only to improve their child’s health, but also enable him or her to live a normal beautiful life.
Usually it is children who mirror their parents, but when a child with special needs is born to a family, parents often start mirroring the child. If the child is hyperactive, then the parent becomes hyperactive; if the child is aggressive or hypoactive, the parent mirrors these qualities without realising it. Therefore, if parents begin to work on themselves, they help their child.
By changing themselves they can change their child. This works both ways
Of course, all parents make classic mistakes. Parents of children with special needs usually fall into two common categories. The first category is helicopter parents, who pay extreme attention to everything, are overly involved in their child’s life and forget about themselves. As a result, children grow up somewhat egoistic because the whole world revolves around them, and can do little by themselves. The second category is emotionally unavailable parents. Such parents take care of their child, feed and provide medical care, but are not emotionally attached to the child. Every child is different; they can be silent, reserved, emotionally distant or whiny. And parents may also become emotionally distant and lose their connection to their child. The child is on his or her own and the parents are on their own. And this is of course hard for all of them. This is why it is important to help parents to see their mistakes. If a person is ready to solve the problem and wants to change, I help them to restore the lost connections, accept and love themselves and their child, stop feeling guilty and live a full and happy life.”
Inclusion during the Pandemic
Svetlana Savina is the mother of a seven-year-old boy with Down syndrome and one of the founders of the Kun Bala Foundation. She abandoned her profession of an accountant and became a psychologist in order to work professionally with parents of children with special needs and teenagers with Down syndrome. She told us about her work during the pandemic and why the development of children with special needs required not only involved parents, but also teachers.
“Our Foundation works with children of different ages – from six months old to teenagers. We work either individually or in small groups – up to four people. Various specialists work with children: psychologists, special education teachers, speech therapists, neuropsychologists and exercise therapists. During the pandemic and lockdown, we had to shift to online classes. On the one hand, this made it possible to reach parents from different cities of Kazakhstan and to share development methods with them. On the other hand, this increased the already great pressure on parents of children with special needs.
There are many complex nuances: for example, a specialist knows how to organise work with a child and sets the development pattern for the family. When the pandemic occurred, all this work fell upon parents: they had to become specialists and teachers and to earn money. Not all parents, however, can work with their children, and not all children perceive their parents as teachers. My son, for example, treats me as his mum. And I am implementing one of the elements of his development exactly when I act as his mother. At the same time, it is quite difficult for me to motivate him to do something specific, which is necessary for his development.
This is a different sphere where a teacher is needed
Finally, there is a calling to be a teacher, and not every mother can act as a teacher for her child. This is her child, she naturally loves him or her, but not everyone is able to teach. This job requires special skills and resources. As a psychologist, I work with teenagers and understand how many emotional resources this job takes, and this is taking into account that I do not work on a daily basis and all day long. As for parents, they are expected to come home after work and carry out special education interventions, especially during the pandemic. Although this can be done as a play or a time spent together, not every parent has sufficient professional skills to do this work correctly and accurately.
And they may not have necessary resources. As a psychologist, I know that many parents are exhausted and burnt out, while a child resembles a battery which needs to be charged regularly.
This is why good teachers are needed for the development of children – not only with developmental disabilities – and it is highly desirable that they work offline, not online
It is quite difficult to develop empathy and emotions through the screen, to show approval and see sparkled eyes in response, and most importantly, it is impossible to interact kinaesthetically, which is incredibly important for children with Down syndrome.”
Svetlana, like Alla, our previous respondent, works as a psychologist with parents of children with special needs. On Saturdays, she holds a group for teenagers with Down syndrome who left high school and did not get jobs, because the sphere of employment for people with developmental disabilities is not yet developed in Kazakhstan. Few people with Down syndrome and other developmental disabilities manage to find their place when they grow up. Fortunately, the situation is gradually changing, as says our next respondent.
Inclusion in Theatre and Cinema
Daniyar Musirov has been working in photojournalism for 10 years, and his heroes are mostly people with different developmental disabilities. This is why he decided to dedicate his first documentary to this topic. The hero of his debut film was Almaz Nasrullayev, one of the actors at the inclusive theatre laboratory Literal Action. The film will be premièred in September within the framework of the Documentary Film School organised by Internews.
Daniyar Musirov:
“Someone might think that this film will play upon the emotions and this is done on purpose. My answer is no. This film is not about pity. I had another goal, that is to show that people with developmental disabilities make others feel not only pity for them, but also admiration, pride, love and respect.
Almaz, the hero of the film, has Down syndrome. I understand that this syndrome has different forms and specifics, but I can say with confidence that Almaz and his colleagues in the Literal Action theatre are very interesting people; each of them has their own world, dreams and aspirations. Perhaps these guys have had more attention from their parents at home, had special education and have been involved in social life; this is why they feel free and liberated. In some moments I even forgot about their development disabilities, wanted to join them, went to drink coffee with them and took part in their conversations about films and artists.
It's hard for me to remain objective about Almaz. We became friends in the course of filming
He is an open-hearted, honest and cheerful guy. I like such straightforward people. In general, I noticed that this is typical of people with Down syndrome with whom I worked during the filming. Therefore, every day of filming was full of emotions, conversations and even quarrels between the guys.
The Literal Action theatre managed to create our society on a small scale: actors fall in love (I have lost count of Almaz’ ‘fiancées’), get offended and have fun, and, what is more important, they work. Almaz is proud of his work, his honestly earned money which he, like all ordinary people, spends to buy new clothes or go to cafe.
I hope this film will convince parents of children with special needs that they need not seclude them at home and stifle their individuality, will encourage parents to see their children’s passion for any job which will help them become independent, and, most importantly, to empower them to be who they are.”
We are confident that inclusion-related jobs will become more and more relevant year by year. The development pace of this sphere will depend on how soon the Kazakhstani society will realize that socialisation of people with developmental disabilities is needed not only for their own families, but also for everyone else. It is these people who will remind and show us the importance of human contact and empathy in the era of total digitalisation.
Illustration: Aziza Kireyeva
Photographs were provided by heroes of an article
This project is supported by a grant provided by the U.S. Embassy in Nur-Sultan, Kazakhstan. All opinions expressed are those of the author and do not necessarily reflect those of the U.S. Government or the U.S. Mission to Kazakhstan.
Данный проект реализуется с помощью гранта от Посольства США в Нур-Султане, Казахстан. Мнения, выраженные в материалах, принадлежат их авторам и не обязательно отражают точку зрения Правительства США или Дипломатической Миссии США в Казахстане.
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