Better Chances

From the BBC:

“Ukraine war: ‘We long for home - but our son has chances here’”

(Roman, 20, is being taught at a school in Poland - it's the first time in his life he has been able to access an education)

When war broke out, millions of Ukrainians had to make a life-changing decision to flee their country - with many hoping to return as soon as possible. But for some disabled refugees, this displacement has offered new opportunities, and they now face a dilemma over whether to ever go home. The Kyrychenko family fled Kyiv as missiles rained down. In the space of an hour the parents had packed up their car with three children, a dog and two guinea pigs. Without time to plan a destination, instinct took over and their safety was all that mattered. Nine months later, they are just some of the 1.4m refugees living in small apartments, rooms and shelters across Poland. This means that their eldest son Roman, who has cerebral palsy and learning disabilities, has been given the chance to go to school for the first time. He is 20 years old. "Back in Ukraine we were told he was unteachable, that there was no school for him," his mum Olga says as she makes packed lunches in the family's small kitchen.

(Previously, Roman spent his life stuck at home with his family)

For many disabled children and young people in Ukraine, access to education is rare. Before the war, fewer than 3% were enrolled in mainstream school. Roman needs support to walk, and communicates through sounds and facial expressions. While he spent most of his life stuck at home, his younger sister, Sofia, was in full-time education. Now, in Poland, they both leave the house for school. "Over the years that he didn't go to school, he lost a lot. And we lost a lot as a family," Olga says.

Widespread abuse

(Roman is learning new skills, he loves the therapy he receives in the school gym and he is "a different child" now)

Back in Ukraine, Olga and her husband Volodymyr have had to fight to keep Roman from a life in an institution or a "psycho-neurological boarding facility". The authorities have spent two decades telling them that their son belongs in one of these places. "They said, 'Give him away, you can always have another one,'" Olga says - the determination on her face making clear that this was never an option. More than 50,000 disabled children and young people exist in this system - a network of more than 700 institutions. They are casualties of a Soviet era that encouraged parents to give their disabled child up to the state in the belief children receive better care in an institution. A BBC News investigation in August uncovered widespread abuse in these establishments and the team were asked to give evidence at the United Nations. Following that, UN experts demanded that the government urgently continue its de-institutionalisation process - returning children to families, increasing community support and closing facilities which abuse and neglect some of the most vulnerable in society.

Now in Poland, Roman starts his day with new purpose. Supported by his dad, he navigates the several flights of stairs from their small apartment in the suburbs of Krakow before a taxi takes him to a specialist school a few miles away. There, his face lights up as his music therapy teacher plays the piano for him. She says the aggression he struggled to contain when he first came to the school back in March has left him, he's a "happy kid" who feels at ease and confident in this new environment. He is given one-to-one support and physiotherapy in the school gym and his walking is steadily improving. For the first time, he can mix with his peers and learn new skills. "I do not understand why he did not go to school in Ukraine," the head teacher, Urszula Majcher-Legawiec, says in one of the school's brightly-coloured corridors. "We know his potential. Roman is constantly improving, he is learning new communication skills, he can tell us what he needs. A place like this is the best place for him." "I am very proud of him that he goes to school," Olga beams. "He goes with pleasure."

Walking for the first time

(It took months to raise 20-year-old Ivan into a sitting position so he could be in a wheelchair)

A few hundred miles away in the north of Poland, I meet another 20-year-old refugee whose world is gradually expanding - but this time from the confines of his bed. Ivan had spent his life lying down in an institution in the east of Ukraine. He is one of 60 disabled evacuees who fled their orphanage in Kharkiv just after the war broke out. It was a gruelling 48-hour journey through Ukraine, during which some were tied to bus seats. Two of them did not survive. "They were in a terrible condition," said Katarzyna Bogumila, a Polish volunteer who has helped care for them since they first arrived. "They were really skinny. Like dry sticks, and I didn't think it was because of the war. They came to Poland at the end of February and it was just after the invasion. So it couldn't be that - it had to be like a system in Ukraine or something."

Ivan looks no older than a six-year-old, undernourished after two decades in confinement. His hair a flash of red against his pale skin. Along with the other evacuees, his new home is a former psychiatric hospital in the city of Torun. It has taken months to raise his fragile frame to a sitting position. If they elevated him too quickly there was a chance he could have had a stroke. His view of the world has completely changed - he can now move around in a wheelchair, his face lights up as he is pushed to his physiotherapy. For the first time, he can see the lives of those around him.

(Lillia is receiving one-to-one physiotherapy and learning to walk for the first time at the age of 11)

Other children have also developed. Eleven-year-old Lillia, who has complex disabilities, is walking for the first time. One young man picks up a feather in the sensory room, an experience he has never had. The look of joy at his new-found capability glows on his face. For Katarzyna, this is a short term solution. Her belief chimes with the UN experts who have criticised the Ukrainian government for insisting disabled children remain in a residential setting even when abroad, rather than being supported in the community. The government maintains it is the best way of being able to track the young evacuees and prevent trafficking. "Every kid should have the chance to be with a family," she said. "I'm hoping they're going to stay in Poland and we can find them families. I can see the difference being here is making every day. It's awesome. I feel like they're my own kids. I don't want to let them go."

But the situation is complex, illustrated by the dilemma facing the Kyrychenko family. Olga feels the pull of her homeland, but Poland offers so many opportunities for her son. She knows if they return to Ukraine his life will stagnate again. "Our soul longs to go home while the brain says something different. For Roman, it is better here. It is amazing he can go to school here. "It's hard to return from good to worse conditions, but abandoning Ukraine - our home is there. I just have to hope that maybe we can bring our experience back to Ukraine and a school for Roman could open there."

^ Ukraine (and many other countries of the Former Soviet Union) treat the Disabled very differently than we do in the West. That can’t be blamed on the Russian War. It has been going on for Decades and is sad to hear about and worse to see in person.

Sadly, I never visited a Disabled Institution when I was in Kyiv so I can’t describe things personally.

 I did go to two Disabled Institutions in Yaroslavl, Russia – I had to force my Teacher to take me there the first time and she waited outside in the cold street rather than go inside because she was afraid (at the age of 70) to catch any Disability the Children had.

My visit to the first Institution was random (as I did for all my other places like the Wedding Palace, Homeless Shelter, Hospital, Police Station, OVIR, Regional Duma, etc.  – I just showed up early in the morning, said I was American and wanted to see how things were going (for both the Employees and the Patients – as they were called – I called them Children.)

It was a typical Soviet-style Government-run Institution and everything inside was as dark and creepy as the outside. I wasn’t allowed to take any pictures, but the scenes I saw with my own eyes will haunt me forever and remind me of being made to watch the “Willowbrook” Documentary about the Disabled Institution in New York every Summer – I was there for 4 Summers -  I was a Counselor at an Overnight Summer Camp for the Mentally and Physically Disabled.

There were around 100-150 Children from Babies to 17 in various stages of abuse (some were chained to other Children, some were chained to their beds, some were chained onto toilets to “potty train” them. They were all dirty looking and had sullen eyes.

On another day, weeks later, I went to a Private Disabled Institute (not an Institution.) Again, I randomly showed-up, said I was an American and got to speak with the Employees and the Children. This place had been a Soviet Psychiatric Hospital where Dissents against the Soviet Government were kept drugged and chained 24/7 for years.

There were about 50 Children from Babies to 17 and while the outside of the building was dark and grey  -as are most buildings in Russia built before 1991 the inside was brightly painted. I didn’t see any chains and while some Children screamed (as part of their Disability) I heard a lot of laughing and playing. They were getting ready for a dance that night and invited me to come back for it so I did and they played Diskoteka Avaria among other popular Russian Singers.

I brought them gifts of Juice, Fruits (which were too expensive for them to have often since it was Winter) and Candy.

Getting back Ukraine: For 31 years, since the USSR collapsed, Ukraine didn’t pay much attention to their Disabled. Many Doctors and Public Officials there were brought-up under the Soviet System that believed the Disabled must have done something awful and so deserve their Disability and if you help them then you could suffer the same fate as them.

Now that Russia has attacked Ukraine these Disabled Institutions are being evacuated either within the country or to other parts of Europe. My one hope is that once the War is over and Ukraine wins they will rebuild their Disabled-Support Services in-line with European and American Standards and not the old Soviet Standards as before. ^

https://www.bbc.com/news/disability-64000114