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In Ukraine, displacement adds burden on mothers of children with disability

By Sven G. Simonsen

Diana (12), a girl with disability, fled the conflict in Luhansk city in eastern Ukraine ten months ago together with her family. Diana is still affected by what she witnessed then. But today, a visit to the hairdresser has given her good reason to smile. ‘Look, I am beautiful!’ she says.

©Photo: Pavel Demchenko

Diana (12) has been displaced from Luhansk city together with her family.

Diana is adorably chic with her new haircut, and for now, traumatic experiences seem forgotten. Her high spirits are contageous, and her mother Tania (37) allows herself to relax a bit with Diana and her little sister Liza (2).

The uncertainties of everyday life facing Tania will be back soon enough: will she be able to feed the children; will her husband, a builder who has gone to Russia to work, earn enough to send back any money; will the family be allowed to stay in this temporary center for internally displaced people (IDPs) in the city of Kharkiv?

Dramatic escape

Years ago, Tania and her husband made a decision that is uncommon among parents in Ukraine: to keep and care for their disabled child. In line with Soviet practice, many more parents still give up their children to institutions. Some 167,000 Ukrainian girls and boys are registered with disabilities. More than 70,000 of them live in institutions.

©Photo: Pavel Demchenko

A relaxing time for Diana, her mother Tania, and little sister Liza.

Parents like Tania have minimal support. ‘Yesterday, while I was standing in line at a government office, a man asked me how long I had been waiting’, Tania says.

‘I told him, “All my life.” That’s how it feels.’

In the last year, their problems have been compounded by conflict and displacement. Their escape from Luhansk in July 2014 was dramatic; they barely made it on the last train to leave Luhansk for Kharkiv, on 18 July 2014.

‘There was fighting when we fled. Diana still has nightmares about it. And she is afraid of airplanes, after she watched a military plane get shot down and crash’, Tania says.

‘I never completely relax myself’, she adds. ‘This IDP center is close to the airport, and if something happens, it could start here, as it did in Luhansk and Donetsk.’

Tania is grateful to stay here; the monthly rent of 440 hryvna (USD 22) is affordable. Still, she is sad because there is little opportunity for rehabilitation for Diana, who suffers from motor sensory neuropathy. The girl’s muscles are very weak; she is only able to count and multiply the lowest numbers.

From vulnerable to desperate

Galina (24) is another mother who has been displaced to Kharkiv with a disabled child. A single mother from a village in Donetsk region, she first came to Kharkiv in the fall, for orthopedic treatment for Sofia (6), who is severely disabled with cerebral paresis.

©Photo: Pavel Demchenko

Sofia (6) has come to the children’s home for rehabilitation with her mother, Galina.

While here, it became clear to Galina that they would not be able to return. She and Sofia were stranded in Kharkiv. Their situation went from vulnerable to desperate.

At that point, however, Roman Marabyan, Director of the Kharkiv region specialised children’s home #1, invited the mother and daughter to a one-month rehabilitation.

‘He practically saved us. I didn’t know anybody here, we had nowhere to go’, Galina says. Tears well up in her eyes when she recalls how things were half a year ago.

Separated from her son

With Marabyan’s support, she has since found an apartment outside the city, where rents are low. When we meet her, she has just returned with Sofia for one more month of training.

‘They teach children how to do things by themselves. For example, Sofia has learnt how to rull around on the floor without assistance.’

When we ask Galina about her son, she starts to cry. Sofia notices her mother’s distress, and gets agitated. The two hug in mutual comfort.

The boy is four years old now, Galina explains; she hasn’t seen him in seven months.

‘I am planning to stay here in Kharkiv, but I am not sure this is the right time to bring him here. We are preparing for one more operation for Sofia; maybe after that.’ Back home it’s quiet now, and the boy is in kindergarten. Galina is reluctant to uproot him, regards of how much she misses him.

‘His name is Vanja’, she says, with a teary smile. ‘Four days after he was born, we still didn’t have a name for him. But then I had a dream, Sofia came running to me, saying ‘Mom, Vanja is crying!’ So I decided to call him Vanja.’

Helping mothers with UNICEF support

Tania and Galina are among countless parents who have been helped by Roman Marabyan. Although Tania’s daughter Diana is too old to be included in the early intervention program, she has benefited from specialist consultations, and received medications and toys. Recently, Marabyan organised a mini-fundraiser to buy a new stroller for Diana, who is unable to walk.

©Photo: Pavel Demchenko

Roman Marabyan, Director of the children’s home, works with UNICEF to enable more families to keep and care for their children with disabilities.

For 18 years, Roman Marabyan has been director of this institution. For the last ten of them, he has cooperated with UNICEF to promote de-institutionalisation, and early intervention for families with disabled children.

When he took over, as many as 140 girls and boys were living here. To improve conditions, he brought that number down dramatically. Today, 60 children, all of them with disabilities, stay here. Thirty are orphans, between ten weeks and five years of age. Among them are 16 who have been brought out from conflict areas in the east.

A further 30 are here only temporarily, like Sofia, for rehabilitation and early intervention. In one year, some 300 families undergo early intervention training, where parents learn how to train the child and include it in the family.

‘With them all the way’

Institutions for children with disabilities – especially for those older than five years – are severely underfunded in Ukraine. ‘Staying with their family is so much better for the child. The job we have taken on is to make it possible for more parents to do this’, Roman Marabyan explains.

‘We have broken the Soviet system’, he continues, clearly contented. ‘In the process, we have created a new job for ourselves; to run a system caring for children and their families where the client is at the center.’

Traditionally, parents have even been discouraged from seeing their newly born child with disability. Roman Marabyan, on the other hand, encourages an emotional bond between parents and their disabled child. The goal: to make more parents opt to keep their children.

‘To the parents who make that choice, we pledge that we will there with them all the way’, he says.

For mothers like Tania and Galina, Marabyan’s support has already proved invaluable in the most trying times.

 

 
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