'Whatever Agnieszka wants from life she gets'

Agnieszka Bal was born with athetotis, a disturbance of the moving capability of the body. Simply put: she has no control over her bodyparts. At the time of her birth, 1990, there were no institutions in Poland to treat children like Agnieszka. Her mother then decided to start one herself. Both Agnieszka and her mother tell their story, with the interpreting help of Alexandra (one of the many personal assistants of Agnieszka) and Josephine (the older sister of Agnieszka who interpreted my questions and her mother's answers).
 
I meet Agnieszka and Alexandra at the Warsaw University in between two examinations. They both study political sciences. Agnieszka communicates through a board on her electronic wheelchair at which she can point to letters and figures. I ask her whether she likes her study and what she wants to do after study. 'I would like to work in the advertising. After I have reached my bachelors degree in political sciences, I want to start a new study. Journalism or cultural sciences. I'm aware it won't be easy to find a job seen my disability, but I'm confident I will get one.
 
'I feel accepted by the other students, but not always by the teachers. Some of them don't want to examine me. They think I'm stupid. I want to be treated just like all the other students. Sometimes I need to talk to those teachers to explain my situation. The biggest problem with regard to studying are the examinations. Some of them need to be adjusted. Another problem is the accessibility of the university building. The elevator is located at a place where I can't get with every wheelchair. I have to be carried to the classroom then.'
 
Agnieszka has transport to and from the university. 'I can't go to the university on my own. The hardest thing for me to move around in Warsaw is to communicate. I get no special financial support to study. I do receive a monthly sum of the government because of my disability and I have a bursary for my study. I pay my study myself.'
 
Agnieszka is very much aware of the situation of disabled people in Poland. She started an action to change a certain tax advantage, so it can be used for all disabled people. 'One can spend 1% of his tax income to an individual who needs extra care. I think it's better that 1% is being spent to an organization that helps a lot of people at the same time. That's why I started we are giving our 1%.' She wrote a blog about her idea. Unfortunately for her, the authorities didn't react. Other people with a disability reacted reluctantly. They told Agnieszka that this tax gift of 300 Zlotty which they can receive from family and friends is much money to them. Agnieszka understood their point of view and stopped her action.
 
Agnieszka doesn't speak much about her disability. It is there and living with it can be difficult sometimes. She gets strength out of her religion and is active in a Polish organization for youngsters with a disability. They meet each other two times a year. About her future, she's short: 'Poland is my country. I'm happy here. I want to finish my studies and find a job. I'm not thinking about a relationship at the moment.'
 
And off were Agnieszka and Alexandra again, spending some free time in the sun before another examination started. Spending some free time in the sun was what I did as well. Waiting for Agnieszka's mother Margaret and sister Josephine to arrive for the second part of this interview.
 
Dedication to children with a disability
 
When Agnieszka was born, her mother Margaret knew nothing about her disability. She went to the universal library to read the necessary info. In that time, there were no institutions either to take care of little children like Agnieszka. Such children stayed either in the hospital or at home. In 1994, Margaret Bal then decided to start a clinic herself where these children can be taken care of properly. Almost twenty years later, the number of clinics has risen to five. They are located in Warsaw and the direct environment.
 
Margaret: 'First, we offered only medical treatment and kindergarten and primary school. This year, we also started with psychological support. The children vary in age from babyhood until 12 years old. Until that age the brain develops itself quickly. From the age of 12 the children can find their own way in life and visit open schools or follow special education. The clinics are open institutions, meant to support the families. The children stay there every day until 4 pm. 
 
'At the moment, there are 700 children placed within the five clinics and 200 in the schools. Their numbers have been stable for some years. Also, because we do not have the possibility to expand the rooms. The children stay in small groups with each other. Little children need to be in small circles where they can make friends easily. In the early years, parents had to pay for the education and medical assistance. Nowadays, the clinics get financial support by the communities and an organization for health care. Parents thus don't have to pay anything anymore.'
 
Margaret was chairman of the clinics for a long time. Right now, her son is executing this function and she's his right hand. Her daughter-in-law has started working in the clinics as a clinical psychologist. According to Margaret these clinics will have to be there as long as there are disabled children.
 
Confident about Agnieszka's possibilities
 
Agnieszka lives together with her mother. Her father doesn't live with them anymore. Josephine lives on her own, just like the other children (five in total, including Agnieszka). Agnieszka's mother is absolutely sure everything will come alright for Agnieszka with regard to her future. 'It's certainly possible she will get a job. It will be difficult, for Polish society isn't completely ready for people like Agnieszka yet, but what she wants she gets. She finds her way. Coping with her disability hasn't always been easy for me. Nevertheless, it's always interesting to be with her. She gives me a lot of joy every time she says something to me. And thanks to her I started the clinics.'
 
To end, I asked Josephine how she experienced her childhood with Agnieszka. 'It was difficult. When I was young, I didn't understand why she got all the attention. I was jealous sometimes. The whole family is now still concentrated around Agnieszka. We all live very close to her and have much contact with her. We don't feel ashamed to be with Agnieszka.'
 
Josephine ends: 'What I finally would like to say, is that there should be more financial support for families with disabled children. Agnieszka has been lucky to be in our family, but many disabled children don't get the attention they need because of a lack of money. Furthermore, I think many disabled people are too passive themselves. Agnieszka does a lot and has many friends. You don't see that often with other disabled people.'      
 
It was a memorable encounter with a very brave family. Margaret Bal has set up something quite unique in Poland in the beginning years and Agnieszka can only be admired for her personal strength to get as much out of life as possible. At the age of 16, she already wrote a little book about her disability. Although the main language is Polish, there are short English summaries in it as well. In the book she expresses her thoughts about her disability and her future. And she stresses the fact that she's not different from other people despite her disability. The book has been published by Stowarzyszenie Po pierwsze rodzina, ISBN: 83-910046-4-3. It can be ordered through Josephine, jozefina.bal@gmail.com It's surely worth reading it to learn to understand Agnieszka's way of looking at life better.  
 
Agnieszka and Margaret didn't give a favourite music clip.
 
Copyright text: Johan Peters, June 14th 2013 - ...