Ukraine - Kate's story

In Ukraine, a mother can give up her child to the state by simply signing a piece of paper and handing her baby over in thematernity hospital. So simple, yet with a potentially devastating impact. The children that are given up tend to be the disabled ones. A mother can simply walk away and if she does not make any contact with the baby unit that takes the child on initially, then after six months, she has no parental rights in the future. The child belongs to the state.

I started my research to make a film in Ukraine a year ago, looking into the lives of orphans in state care. The present government of Ukraine says it is in favour of deinstitutionalization. But despite this, according to UNICEF, the number of children in institutions has doubled in the past ten years.

With this in mind, I went on a research trip to Ukraine with my translator and with a map we set off across the country looking at a number of institutes for the disabled and the able bodied.  During this trip, I met the Director of an institute in southern Ukraine who surprised me by truly caring for the children he was in charge of. I learned that his institute, like most institutes in Ukraine, has it’s own cemetery, where over 400 children have been buried over the years. I also learned that if the children survive the system, then they graduate into psychiatric institutes and old peoples homes.

It was on learning this that my focus for the film became to investigate the overall failings of the state system - rather than criticizing an individual Director or carer’s weaknesses.

For filming, we set ourselves up as a small crew of three - me, my translator Olga and cameraman Matt. Our equipment was compact and lightweight and included several secret cameras, as we were not sure what we would come across during the months of filming ahead of us.

On first arriving at the institute in the Summer of 2011, Nikolai, the Director was very pre occupied and told us that he had recently received three very sick children from a Children’s Home, who clearly needed hospital care and should never have been sent to his non medical establishment. He said he had been afraid that he would not be able to keep the children alive and that they would all end up in his cemetery.

What unfolded from here was an alarming sequence of events. Two of the sick arrivals died after hospitalization and the third one, Margarita was still in the intensive care unit in the local hospital. Nikolai was deeply concerned that this third child would also die, so we accompanied him to the hospital to see why these children are dying during or after a spell in hospital.

When we got there, we found Margarita in the corner of the intensive care room, which appeared to be a standard sort of ward, with two beds. The other bed had a middle-aged alcoholic in overnight. Margarita looked shocking, she was tiny, thin, fail and on oxygen. She’s six years old, but was the size of a toddler and can’t have weighed more than a few kilos. I got into a discussion with the anaesthetist  and asked him what the plan was for Margarita, to which he basically answered there was no plan and as soon as her temperature dropped she would be sent back to the institute. Nikolai got involved in the conversation and asked what he was supposed to do with Margarita as he had no idea how to take care of such a sick child and he was worried she would suffer breathing problems back at the institute, and die. A senior paediatrician then joined us and he said that Margarita was ‘’a disaster from long ago, from the child’s birth and that there are a great many children like her in the institutes. It is not I who resolves these issues’’.

It was really upsetting to witness such a lack of care from those whose job it is to care. To witness such apathy and an attitude of shrugging the shoulders saying ‘’It’s not our problem’’ was extraordinary and made me question how on earth any institute Director was supposed to help a sick child.

Margarita is what is called in Ukraine, a ‘’social orphan’’. This means that like so many of the children in the orphanages and institutes, she has parents who are still alive, but are unable or unwilling to care for her.

It seems ‘the norm’ for parents to give up their child to the state if a child is born with a disability. Just the simple method of signing a baby over in the maternity ward is something that is very hard to understand. I have children of my own and it seems beyond belief that the solution to disability is to walk away from it and pass the responsibility of this child’s life to the state. But this is done with the belief that the state will do a better job at raising a disabled child. There are 88,000 such children.

Most of the institutes the orphans end up in are tucked away, out of sight, in locations far away from main towns, hiding those with disabilities from society. It leads to lives of isolation and institutionalization on a level that is painful to witness.

At Nikolai’s institute there are one hundred and twenty six children, but only four are true orphans with no parents – all the rest are social orphans – their parents have chosen to give them up, or they have been taken by the state. The main reasons for this are unemployment, poverty, alcoholism, drug abuse, prostitution and single parenting.

Filming the children at Nikolai’s institute was a happy-sad experience, because all the time I was thinking ‘’But these children have parents’’. It seems so very wrong they are bundled together without the love of a family. But of all the institutes they could have ended up in, this was a lucky placement because Nikolai truly cares for his charges and wants to try and give them the best he can.

However, he is fighting with a system that seems to have a different attitude towards orphans.

The hospital experience with Margarita was shocking, but so too were the physical conditions of some of the children Nikolai was expected to care for.

Nastya has been bedridden most of her life. She is painfully thin and looks like she has no strength to draw the next breath. She is motionless, wheezing with each breath, she cannot chew any food, so is bottle-fed with liquids. She lies listlessly in her cot day in and day out – and has done this for most of her ten years of life so far. She is in and out of hospital on a regular basis, not really ever receiving any proper care – and this is where I get lost in the whole system. Why on earth isn’t something done for her? To see her wasted body, I almost wished death upon her to relieve her of her miserable, painful life.  There must be more that can be done. If she had different doctors to the ones at the local hospital, doctors who actually try to rehabilitate her and get her medication that helps her body to mend, then she might be able to sit up and be part of life in the institute. Instead she lies perfectly still, unable to move so much as a finger. It is only her eyes that follow you.

Nadia is also bedridden. She has a huge cyst like growth on her head that prevents her from being able to sit up or move around, so she too just lies in her bed, watching and listening. The institutes doctor, a lovely caring lady, but a trained dentist, tells us Nadia’s cyst contains her brain and that her skull is full of liquid. She also says Nadia is smart and responds to the carers, and she uses her hands to draw people towards her. She giggles and sings. But that’s the extent of her life, looking through the walls of her cot and the length of her arms to reach out to anyone passing. She has a beautiful face and cheeky eyes. I wondered on many occasions watching her in her cot what she would say if she was able to communicate her thoughts and how much better her life could be if only someone would focus on helping her.

But the institutes doctor told me that in 2008 all the children were examined by a psychiatrist from the regional children’s’ hospital and that he wrote in all their medical histories that rehabilitation was impossible. I was speechless, I just cannot imagine such a mass prescription from a presumably educated person.

Not a single child has ever been adopted from this institute. His carers are afraid of the HIV child in their care. The children living in their cots, rarely leave them – and there is little connection with the community.

Nikolai explained that where you go as an orphan in Ukraine is a bit of a lottery. As a result, children who with loving care could have lived a normal life, end up alongside those with severe disabilities and very different needs. Each carer is responsible for nine children at any one time and whilst this seems extreme, it used to be up to twenty children per carer before Nikolai took over as the Director.

Today, disabled children invariably grow up with the state as their guardian. This is because under the Soviet system it was widely accepted that institutionalized care for disabled children was better than parental care. Parents were considered ignorant in the field of raising children and although it was accepted that parents had the right to bring up their own children, this was seen as the delegated right of the state.

Lyosha is ten and is a bright sparky lad, who has no arms and legs. But with a fighting spirit he uses his balance and powerful neck muscles to propel himself around the building he lives in. He is another social orphan; his mother signed him over to the state as a baby and gave up all parental rights.

He is one of a group of boys who Nikolai has plans for. During filming, a small house on the campus of the institute was being renovated for those most capable of learning. This is a huge step in the right direction, totally led by Nikolai, who raised most of the money from Russia to set it all up.

Nikolai has seen too many of the children he has cared for leave as adults, to be scattered across the country and deposited into big unfamiliar psychiatric institutes or old peoples homes.

Whilst filming at Nikolai’s I became aware of a status in Ukraine that appears to hold young people in the system even when they are capable of living in society. Some of the young adults are categorized as ‘‘incapacitated’’, which basically means they are unaware of their actions or not in control of them. With this, they are kept institutionalized for life.

Tatyana Makarava, a Ukrainian businesswoman has been fighting for this group of incapacitated orphans for over a decade now, and through this lady I got access to several young men who have lived for years in state care. They described their lives within the system – where they have suffered beatings, isolation cells, humiliation and had anti psychotic drugs enforced on them on a regular basis. One young man said ‘‘before lunch they gave us injections of Haloperidol and Aminazine. Haloperidol twisted and turned your body inside out. Aminazine made you sleep for two days’’. It was shocking to hear the abuses they had clearly lived through. And what is their crime? To be an orphan.

I couldn’t work out why the government would benefit from holding their young in the institutes, by labelling them as incapacitated. Then, over the period of filming and meeting more young men held against their will, it became clear that they were being used as a free or cheap labour force and it was cheaper to keep them ‘’in’’ than have to provide state accommodation for them out in society.

So if this is the mentality of the government hosting Euro 2012, spending £9 billion on making good the country for the football championships  - then why doesn’t it take a moment to consider prioritizing the lives of the most vulnerable in state care, who can end up in un-named graves in the country’s cemeteries.

Mahatma Gandhi once said ‘‘a nation’s greatness is measured by how it treats its weakest members’’.