During the past week I met some of the staff of the Zherelo (‘Source’) Special School in Zaporizhzhia, which caters to children with Down syndrome, Deaf children and those with motor disorders. On the second occasion I was given a tour of the school, which was half destroyed by a rocket in September 2023 but is now being rebuilt.
But first: Natasha Botnareva and Irina Rylushko have 58 years’ teaching experience between them, first at regular schools and then for about ten years working with the Down syndrome classes at Zherelo. They insisted on buying me excellent borscht at the Zaporizhzhia Sich traditional restaurant on the Khortytsia Island Nature reserve.
Note to readers: the question of what language is appropriate to refer to people with various disabilities and the issues they face is a complicated one. I’ve tried to combine awareness of this with a reasonably accurate translation of the Russian in which the conversation was held. Terminology of course varies between countries in any case. In particular the Ukrainian/Russian word нормально/normalno (usually meaning ‘normal’, ‘OK’ or ‘good’ ) is in common usage in for people without special needs or disabilities.
When was the school founded?
Irina: In 2013, Marina Poroshenko [then first lady] abolished the existing state educational system for these children and in 2014 we got it in Zaporizhzhia. The first school like ours was in Kyiv. We went there to observe their methods, then copied them here.
At first we started in Russian – parents spoke Russian at home with their children – but then gradually, once they were studying words, we moved them to Ukrainian.
Natasha: I teach the reception class, and we mostly worked with our hands. Puzzles, figurines, rubber bands. We have coloured sand for sculptures, and they started working with Zaitsev blocks to learn the alphabet. The older children, in the second and third class, started to write. We teachers draw a lot, too, so the children can see things.
One child can just learn to write letters. Others are more able and can write words. We set the children different tasks.
The children are presumably at different levels?
Natasha: In the Down syndrome class they were at widely varying levels. Some are almost normal, but Irina had two children who can read and write and converse normally. But there are others who aren’t speaking even by tenth grade.
Irina: One boy had Down syndrome and when he was born he was on life support for a week, on oxygen, because he wasn’t breathing. Another girl did everything with her hands, but she couldn’t speak.
Natasha: There are a lot of children who don’t speak at all. I once had a class where out of seven children only one could speak with words. The others didn’t talk at all, they just made sounds, and could say Yes, No, Mama. That’s all. There are also children at a moderate level. In general we don’t take very disabled children. Other schools take them.
Natasha and Irina clearly love their work. But you’ll notice they often speak in the past tense. This is, of course, because the children are unable to attend school in person at the moment. Even before the building was damaged, it had been closed since the start of the war, because Zaporizhzhia is subject to so many alerts, never mind attacks, that it would be impossible to work normally.
Natasha: Usually classes are from six to eight people, but less in wartime. I have four in my class. Two are abroad and only two are in Zaporizhzhia. We work at their homes, because they can’t go to school.
One of my students has gone to Romania, and works online with me. The other is in Germany. The first one goes to school there; the other one is at kindergarten. The first parents don’t intend to come back; the second are thinking it over. It’s a sad situation. Socialisation is very important for our children. It’s important that they study in a school. As teachers, we used to lead them on excursions so they could study among people, talk to them.
We held all our events together in the assembly hall. The deaf children, and the Down syndrome children and the normal children. The result is communication. Children with disabilities are always special, but they don’t feel separate in this collective. They’re part of our school system. If they were taught separately they wouldn’t feel like full members of society.
Irina: They study and imitate the normal children. Then they’re not afraid to go to a café, or go to a shop with their parents.
How do parents handle the situation?
Irina: At our school the parents are good, and well enough off. Our children are all looked after. They are even spoilt sometimes, not told off. That can be a problem too, because they need boundaries. The school regime helped. Everything happened at a certain time: the children studied, ate, wrote, slept, went for a walk. But now the children are at home and aren’t socialised at all.
Some schools are open, if they have shelters. Maybe about half of them, I read.
Natasha: They’re even building underground schools in Zaporizhzhia now. Three or four.
Irina: In Kyiv, they [children with Down syndrome] finish school and the parents have established a café where they work. Parents who have money buy a property, find staff, and the children help them make pizzas and carry them around. But my children finish school and end up at home because there’s no organisation that helps them.
Irina: I have two people who speak, and they can work. Half a day. Not all day, but half a day. But such a person needs a boss who knows how to work with them.
Natasha: A lot of people think such people can’t carry out duties, they’re dangerous. But we believe in them. We believe they can become full members of society.
Do a lot of your students have parents at the front?
Irina: If the dad is the carer, he doesn’t get called up. If the mum is the carer, the dad can get called up.
Natasha: It’s very hard for the parents too. They can’t work because children like this need to have someone always with them. Some have grandmothers and grandfathers, or Dad can relieve Mum. But others can’t do that.
How many hours a day do they work online?
Irina: Two hours. The older kids came to the school when they were younger. Now they’re older, they listen to me. They don’t go off, they sit there and talk.
Natasha: I have the littlest ones. They can’t manage more than an hour. They start to shout and run around. I go to their homes and sit and work with them one-to-one, then parents bring another child to me at my home.
In the West, the situation is gradually improving with regard to disability access issues. How are they progressing here?
Natasha: In Ukraine we’re aiming for European values, so that people with disabilities are [seen as] equal to normal people. Ramps, so people can get into shops, even buses so wheelchairs can board, for example. But we’ve got a long way to go to catch up with the UK and Europe. All the more so now when there’s very little financial support. Hardly anyone’s involved with that kind of thing at the moment. We have something bigger to think about! Maybe in the future.
Irina then asked me about the current attitude to Ukraine in UK. I told them it was positive but more and more people are saying they’re ‘tired’ of the war.
Natasha: Yes, everyone’s writing that they’re tired. They’re starting to have such conversations in Germany, saying they don’t want to help so much any more. You yourself feel how terrible this is. People here feel there’s no way out, they have no faith in tomorrow. Particularly here in Zaporizhzhia. We want there to be schools so children can study, we want jobs, but right now it’s all… We don’t know what will happen. But we believe!
Irina: We are patriots. We haven’t left. Natasha and myself have been here the whole time with the children and the parents. We support them so they aren’t afraid and don’t suffer. We haven’t gone to Poland or Germany…
Natasha: There are patriots there too, who’ve left. It’s complicated. People help from abroad too. Things have been very hard here. In the past three years we’ve seen shelling, destruction, neighbours dying… Zaporizhzhia has suffered a lot. We hope something will change for the better. Everyone believes in this.
Irina: There are good people abroad who help a lot. Our friend Olya in Salisbury has sent us a lot of parcels, found sponsors who donated money and sent it to Kyiv for us to buy twenty-seven tablet computers, here. That’s better because our tablets are in Ukrainian, they support our home-made programs. An IT company even created a program for our children. But it costs almost $120 per computer just for a year’s licence. Our parents can’t afford that. So we’re looking for sponsors who can pay for the licences for this program so the children can study on the tablets.
You know what I’m going to say… that the school needs funding, just like everyone else. If you think you can help, please direct message me.
Next: a write-up of my trip to the school itself. Half-burnt, half-rebuilt, entirely undefeated!
Special indeed! What a great job the teachers and pupils are doing despite everything!
But I feel deeply the discouragement which seeps through from those who say they are tired.
I can only admire all the more those who hold on. I would probably curl up and die... and miss the hopefully good outcome of the others' effort.