Obstacles can always be overcome, it just takes longer sometimes

Ester Milostná studies Information and Library Studies as well as Informatics. She organizes physical education classes, programming and web development workshops, likes to travel and write poetry in her free time. For her efforts as a student, she was awarded the Werner von Siemens Award in the category of overcoming obstacles in studies. "When I was one year old, doctors told my parents that I would not live to be ten. So I had already overcome everything I could," says the twenty-one-year-old student, who relies on an electric wheelchair and personal assistance due to her progressive spinal muscular atrophy.

30 Aug 2023 Markéta Stulírová

Photo: Markéta Stulírová

Why did you choose the interfaculty study of Informatics and Infomation and Library Studies? Were you influenced by your parents or perhaps also by the fact that the faculties are wheelchair accessible?

I decided on my own and chose my fields of study based on what I wanted and what I would enjoy. My parents don't have experience with university studies, and I didn't think too much about whether the courses were accessible to students in wheelchairs. Probably also because I went to a regular primary school at a time when the personal assistance service was being dealt with impromptu and the position of teaching assistant had not yet been established. And it was manageable. And so, actually, I am very pleased with the help of the Teiresias Centre MU (The Support Centre for Students with Specifial Needs, ed.), which works very well. The assistance when it comes to studying is a huge help to me.

What specifically is your focus in your studies?

I am interested in technology education or the use of technology for education in various fields. I don't know yet exactly which of these I want to focus on in the future, but I find the combination of these fields fulfilling.

At the Department of Information and Library Studies, I learn how to work with information and search of all kinds, as well as how to work with people, while at Informatics we deal with the technical side, i.e. how individual tools work in detail, so that we can create something ourselves. I don't intend to be a typical programmer or librarian, but I wouldn't mind doing technology courses in a library, for example.

“My goal is to gain an overview through my studies and to get involved in society in different directions and fields and to function as a normal person.”

Ester Milostná
Student of Information and Library Studies

Do you also enjoy the fact that the humanities are increasingly turning to modern technology, and the two fields are merging?

Everything is evolving very fast and there are just so many directions to focus on. Studying the humanities with information technology is not monotonous - and that's the great thing about it!

Has the study met your expectations?

A lot of things from the two fields I study could be combined. For example, we discussed the same topics at the Faculty of Arts MU and then at the Faculty of Informatics MU, just from different perspectives, which creates a kind of comprehensive package. For example, when I went for my internship, many people warned me that I wouldn't get an internship in library science. On the contrary, after my internship at Digiskills, I stayed there for a temporary job. We are in charge of educational courses and a portal for large companies, and I teach them how to work with technology. Another pleasant thing was that I found a topic for my bachelor's thesis during my first year and managed to approach a colleague from Charles University in Prague who focuses on the topic. My thesis focuses on immersive technologies in museums. I am not a supporter of everything in museums being interactive and clickable, but rather that the technology should support the understanding of what I am about to learn.

So yes, my expectations have been fulfilled, although my goal is not to have amazing grades and a lot of degrees but to gain an outlook through my studies and to get involved in society in different directions and fields. And to function as a normal person.

You're among the top students in your class. How much time do you devote to studying every day?

I was always told that when the high school entrance exams come, I will learn to learn. Then they said when the first year of high school comes, I will learn to learn. Then, when graduation comes, when the first year of university comes... It hasn't happened yet, and I can't learn, but I'm trying to put the new information in context. And if there's something practical in the course, a project or a seminar paper, it gives me a lot more than learning the theory that I'm about to drop soon. I see it as a more useful approach to life.

In the 25th anniversary, you won the award for overcoming obstacles in your studies. With what feelings did you accept it?

The greatest joy for me was that people at the Faculty of Arts MU noticed my efforts. That they noticed that I was trying to get involved in other projects besides my double-subject studies. For example, in my first year I brought a new offer of PE courses to the university and got involved in departmental events outside of class. I was probably chosen by the university for that reason as well. Why I caught the attention of the Siemens jury, I'm not sure of. We didn't get a chance to look at the criteria scores of all the nominees, and, for example, the final introducing my personality mainly included footage of me overcoming the stairs. I was a bit sorry about that.

Because the hardest obstacles for you are not physical...

The most difficult obstacles for me are social. Physical barriers are already regulated by law. Buildings are modified, we have a certain entitlement to assistance... But the fact that I take a different path than my classmates, I don't manage to find a group for a project and I get "dropouts", or when I go looking for a part-time job and according to my CV and phone call, everything is fine, but then I come in person, and they tell me that as a wheelchair user I can't have authority as a teacher, that's demotivating, and I encounter it all the time. Sometimes the problem is also when I go to take my exam and the trolley bus takes a pram rather than me because a wheelchair user is not in a hurry and can wait. There are people who don't realize that we have the same responsibilities and the same needs as everyone else.

You had to fight back in primary school, where you were in a regular class...

I've changed primary schools twice. At the first one, the teaching assistant and the form teacher got fired, so I left too. Then, I had to retake the eighth grade because of my surgery. Initially, I was recommended Kocianka (Centrum Kociánka, editor's note) with the assumption that I would have everything there on a golden platter. I couldn't go to art school or some high schools because the wheelchair user had not studied there yet. I finally went to the Matyáš Lerch Gymnasium and it was great, I experienced equal approach and freedom, and I feel the same at the Faculty of Arts MU. Confrontation sometimes arises with the management of the Wheelchair League. They don't like that I want assistance irregularly or for the whole day when I have work and other activities. According to them, I don't have to have all this, I can be at the League centre and stay with the mentally disabled where everything is provided. The fact that I want something extra is my problem. That means that sometimes you have to fight and kick against those who are supposed to help you, which is demotivating. One gradually comes to terms with the psyche and it permeates into other areas, of course, but the social barrier against wheelchair users still remains.

“I got used to taking a lot of risks, and when I can, I take care of everything myself.”

Ester Milostná
Student of Information and Library Studies

Do these difficult situations give you more perspective on life? People break down over much less serious things.

We all break down and it happens to me. (laughs) Thanks to these experiences, I actually got used to taking a lot of risks, and when I can, I take care of everything myself.

You can arrange the help of assistants through the Teiresiás Centre. Do they rotate, or do you have one that you see repeatedly?

The Teiresiás Centre provides us with assistants during school hours. They accompany us to lectures, classes and exams. But when classes are not in session, I get assistance through the Wheelchair League. People imagine that we have one stable assistant, but it doesn't work like that. And you can't even afford 24 hours a day, seven days a week, the highest care allowance is three to four hours a day, which is just enough for food and hygiene. So, I couldn't have graduated without my mother and the teaching assistants. In primary school it was so-so but now there are only few assistants and there is no one who would go all in. They take turns, which is much harder for me than, for example, climbing the aforementioned stairs. I have to know what I'm going to do a month and a half in advance and report everything in minutes. Unfortunately, if something changes, it can't be adjusted. On that account, it can happen that I'm left sitting somewhere without an assistant and I can't even take out my computer or have a drink. I just sit, do nothing and it's a big waste of time.

Comments from a Wheelchair League assistant who listens to the interview: we also have to balance work with our life. We schedule our shifts and try to be with the same people when we can. It's more pleasant and comfortable for both parties. We also find it challenging when clients rotate. For example, Ester sometimes needs to be carried, which is something that not every assistant can physically handle. In our Wheelchair League, for example, the ratio of men to women is 1:10.

What is the biggest problem in your daily life?

For example, when our electric platform freezes in winter, which happens often. (Laughs) Šaliny (TN – trams) already have manual platforms, which a lot of people are surprised about, but they are more reliable than electric ones and manufacturers are coming back to them again. I'm not even able to leave the house all by myself because I can't open the door. So I have an assistant for the whole journey, even though I have a power wheelchair and I use it on my own. But I can't press the button on a tram and a lot of other little things. For example, there were a couple of times at the Faculty when the elevator didn't work, so I went to the library and joined the online classes, that was fine. Some platforms are also designed for lighter wheelchairs than the electric ones, which is also a complication. The worst part is always the time. Obstacles can be overcome, it just takes longer sometimes.

This year, Ester Milostná was awarded for overcoming obstacles in her studies at the 25th Werner von Siemens Award. "The biggest joy for me was that my efforts were noticed by the people at the Faculty of Arts. That they noticed that I was trying to get involved in other projects besides my double-subject studies," she says. Photo: archive of Siemens Czech Republic

Are you in touch with a community that gives tips, advice and shares their experiences in this area?

There is, for example, an interesting group of people called Toilets for All, which addresses the accessibility of toilets. There was specific advice and the group included people from Masaryk University. A wheelchair user is a very broad term. There are different kinds of disabilities, and while I, for example, may grumble that my assistant doesn't have enough room in the toilet because of the large grab bar and sink, someone else may grumble that they can't get under the small sink or that they lack a grab bar to move independently. As far as I know, there are three of us in the electric wheelchair, the so-called električák, at Masaryk University and we each have a different diagnosis. I tend to get involved in international discussions where there is more practical information, although the legal terms may differ.

What is currently keeping you most busy along with your studies?

I'm now spending a lot of time organising an electric wheelchair floorball team, which we offered to the university as a physical education option, as my friend and I found it in 2021 and a successor to the leadership position hasn't been found yet. We are adding players and looking for volunteers and a second coach. Organizationally and coordination wise we are in charge of everything that is needed, at the same time we are doing the website and promotion.

What are your plans for the future?

To finish my bachelor's degree and pass my state examinations. After that I would consider a master's degree, possibly a pedagogical minimum. My boyfriend and I are looking for an apartment to try to live together, which is related to my lifelong dream of having children. That could be dangerous after 30, given my diagnosis. So, I'm continually adapting my plans to the situation.

What do you like to do in your free time?

I enjoy swimming, which is the best rehabilitation for me. I am freer in the water because I can walk in the water due to less gravity, although I can only swim with assistance. I like to travel and draw, sometimes I write poetry. But if I'm too happy, it's a haphazard thing. I have to be depressed to write, and I haven’t been in that state lately. (laughs)

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Ester Milostná is studying Information and Library Studies at the at the Faculty of Arts MU and also Informatics at the Faculty of Informatics MU. In addition to her studies, she organizes workshops in programming and web development, and has initiated, for example, a floorball team for electric wheelchairs, she organizes workshops in programming and web development, and has initiated, for example, a floorball team for electric wheelchairs users.

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