Locked away in Ukraineâs orphanages
Thousands of disabled people live in Ukraine's orphanages - but many aren't even orphans.
Long before Russia invaded Ukraine, the country was dealing with a problem - the abandoning of disabled people to institutions that werenât fit for purpose.
In a collaboration with Ukrainecast, Nikki Fox and Emma Tracey hear from the ±«Óătvâs Dan Johnson and producer Ruth Clegg about the reality of these institutions and their investigation into them with Disability Rights International.
With thanks to the Ukrainecast team
Recorded and mixed by Dave OâNeill and Emma Crowe
The editor was Jonathan Aspinwall
Transcript
NIKKI- We were going to take a summer break this week but weâve had a re-think, because thereâs been such a strong reaction to some recent powerful ±«Óătv journalism about disability and we want to cover it on Access All. What youâre about to hear is distressing, but we think youâll want to know whatâs happening. Itâs a bit different from what we normally do, but we think youâll understand why weâre covering this.
EMMA- So in this weekâs Access All, youâll hear about the shocking widespread abuse and mistreatment of disabled people in Ukraine. ±«Óătv News gained access to five institutions where they found teenagers restrained and adults lining cots for years. As Nikki said, advance warning, what youâre about to hear is very upsetting.
MUSIC- Theme music.
NIKKI- Iâm Nikki Fox, and I am at Access All HQ in London.
EMMA- And Iâm Emma Tracey, and Iâm in the Access All studio in Edinburgh.
NIKKI- So, this journalism comes from a very good friend of mine, disability producer Ruth Clegg, and the ±«Óătvâs correspondent, Dan Johnson. And I know how incredibly hard theyâve worked on this story. Clegg, as we call her, she is also my Producer, and I know she has been passionate about investigating whatâs been happening in these Ukrainian institutions. Dan and Clegg both met tied down, malnourished adults, who were stuck in cots, where they were self-harming and they were just utterly neglected, and itâs just heart-breaking.
EMMA- Dan and Ruth spent time exploring Ukraineâs network of outdated institutions with Disability Rights International. The disabled boys and men that they spoke with are among 100,000 children and young people who live in Ukrainian orphanages.
NIKKI- Our sister podcast Ukrainecast, spoke to Dan and Clegg about their report, and weâre going to hear some of it now. Theyâre talking to Ukraine cast hosts Lucy Hockings and Vitaly Shevchenko.
MUSIC- Dramatic jingle.
LUCY- I have to tell you, I have covered stories before, thinking about the famine in Yemen, girlsâ education in Afghanistan, and I have to watch the stories a few times over before I can go on air. Itâs the way I prepare myself, because Iâm so upset often by what Iâve seen, and I want to be professional obviously once Iâm on air. Your story was like that for me, I mean I found it, Dan it was six minutes, the television piece, and it was an ordeal really, it was really upsetting. How was it for you filming this story?
DAN- I mean it is relentlessly grim. Everything that we saw over the week that we were filming, it did just get worse and worse, and there was more of it. It is distressing. It is upsetting. And in a way, Iâm really sorry to bring that to people, to show that to people. But then again, you canât look away and you canât ignore these children, because that is the problem that they have had for all of their lives, and for the generations that this system has endured, that people have shied away, that there hasnât been that spotlight.Â
So thatâs why we thought it was important to go back, to go to more places, to really get an idea of how widespread this network is, how longstanding it is, how engrained the mindset is, that keeps that places going, and that keeps the youngest children, babies we saw, entering this system. And then itâs not just children, they grow up in this system, they become adults. This is from cradle to grave, they die in these places often much younger than they should. These lives are limited, constrained, restricted and shortened by institutionalisation.
LUCY- How did you mentally kind of approach filming them and even attempting to interview some of these young people?
DAN- Yeah, itâs tricky. And we really wanted to make this about those disabled people, their situation, their lives, and to try and give as much as possible them a voice. Which is difficult because of the language barrier partly, and because of their difficulties. With some people it was only possible to show you their situation and to try and be as sympathetic as possible as to what theyâre living with, what theyâre coping with.Â
We were able to engage with some people and we thought it was important to use that engagement, to show you the potential that is locked in there, what these people could be capable of if they had a bit more support, if they had the chance to live independently, in the way that they might in some other countries.
LUCY- You were giving them a sense of dignity it felt to me as well.
DAN- Thank you.
LUCY- Ruth, youâve been involved in this story for years. How did that come about? Why did you get involved?
RUTH- Well Iâve worked in disability for quite a few years, and Iâd heard about institutionalisation when I first started working in the Disability Brief. But it was only when I really started to read into it and I discovered the fact that Ukraine had the most, and does have the most amount of children and young people in this system in Europe, over 100,000. This is a country thatâs very independent. It was trying to join the EU at that point even. So I thought this needs to have more insight, more scrutiny.Â
It was only then that theyâd started to reform the situation and reform what was the institutionalisation of children. I mean this has been a problem obviously thatâs been going on since Soviet times. Ukraine gained its independence back in 1991. For at least 30 years this system has been very much part of Ukraineâs tapestry, part of its life, itâs accepted. Back in 2015/2016 they decided there was going to be some proper reform of the system. We were invited over through a charity to kind of look a bit more about whatâs happening. I think what really struck me at that point was, we went to one institution and the first thing that struck me was the fact that they called people children, and Iâm like I am actually conversing with a 35 year old, but he has been here all of his life. He is seen as a child.
LUCY- Heâs wearing a nappy potentially.
RUTH- Yeah. It just completely infantilises these people. And then it kind of becomes acceptable. So then you could see it how it broke down dehumanising the people that weâre meeting. At one point, the director of this institution was really proud of himself, âWeâre doing really well because weâve only lost two boys this year. Last year we lost six because we had a problem with the heatingâ. So, itâs obviously long been a problem. Then with the war things start to-
LUCY- Dan called it in the piece âUkraineâs shameful secretâ, but is it not really a secret in Ukraine, it might be to everyone else. But do people know that this is happening there?
RUTH- Yes. Itâs widely accepted. Itâs widely recognised as a way of caring for people. I think the way that disabled people are perhaps seen in Ukraine, human rights campaigners would say that theyâre seen below other people. So the quality of life thatâs seen for somebody with a disability and without a disability, are completely different. Hence why itâs quite acceptable for people to live in that kind of environment, be locked up in a cot.
VITALY- Youâre absolutely right about the problem being institutionalised. One reason for that is that system, caring for disabled children and people in Ukraine, has been woefully underfunded for generations. Although as you say thereâs a certain acceptance that those people are not supposed to be seen. One thing that my parents told me the first time they came to the UK, they were surprised by how many disabled people were out and about in Britain, because the social environment and the urban environment was more accepting. It was physically possible to use a wheelchair in the street.Â
In Ukrainian high-rise buildings, for example, forget it, itâs not possible to use a wheelchair. So even if you may not be in an institution, you would struggle just to get about. And thatâs a huge problem that cannot be explained away by a lack of money. Thereâs a certain process that will need to take place within Ukrainian society to reform this kind of attitude.
LUCY- Dan, the nurse says this is nature. Nature has decided your fate.Â
DAN- Yeah.
LUCY- And you did manage to talk to some parents, mum and dad who were there seeing their son.Â
DAN- Yeah.
LUCY- What did they say to you?
DAN- I think itâs that sort of attitude that really sums up. Everybody who was involved in the system seemed to sort of accept that, that there just wasnât any hope, that nothing could be done better. The parents were really frustrating in a way because they clearly loved their son, they come and see him, they give him time, they give him love and care when theyâre there. We spoke to his mum who actually works with children with disabilities, so she knows the score. She brought her son to the UK, heâs been seen by a British neurologist to try to improve his condition. So theyâre not naive, theyâre not ignorant, but theyâre just accepting that it would be so difficult for them living in a small flat high up in an apartment block. They told us that when his condition started worsening, he was breaking things, he was making a noise, neighbours were complaining. They have two other children that they have to care for. So it just wasnât practical for them to have Vasil at home with them, even though they wanted to, even though they saw that that could potentially work. They accepted thatâs how things would be if they lived in the UK, they wanted that, but they were still accepting that it just wasnât going to happen, it wasnât realistic for them, and therefore thatâs the place that he is best spending the rest of his life. Itâs so, so sad to see that potential, that love, that is not able to flourish and thrive.
LUCY- I feel like itâs Vasilâs case that will stay with me, because there he is, heâs tied up for hours and hours outside.
DAN- I know, yeah.
LUCY- Heâs 18. So much potential.
DAN- At least six hours we were there and he was tied the whole time, even with his parents present.
AUDIO- Wailing.
LUCY- Ruth, was there one person that you met that you think, âYou know, this personâs going to stay with me after thisâ?
RUTH- It was in a different institution and it was a young man called Oleg who was 43 years old. He has cerebral palsy. We met him and he was in a bed, and the human rights investigator that we were with, Helena, he recognised her, theyâd met seven years ago, and his face lit up and they just had this lovely conversation. It just highlighted that this is somebody with cerebral palsy that has got full capacity that can understand everything around them, but that world that he gets is confined to his bed, and heâs known that since he was in early childhood.
DAN- How are you, Oleg?
HELENA- [Translates into Ukrainian]
OLEG- [Replies in Ukrainian]
HELENA- Very good.
DAN- Thereâs a spark of recognition. He remembers Helenaâs last visit. You met Oleg before.
HELENA- Yes. Iâve been here about seven years ago and Oleg was here. [Brief conversation in Ukrainian with Oleg]
DAN- Hi. Itâs good to meet you.
HELENA- He said, âOh wow, youâre a journalistâ. [Speaks to Oleg in Ukrainian]
DAN- Itâs my pleasure to meet you.
RUTH- Helena said at one point I just worry really that, well not worry, just feel frustrated with the fact heâs got so much potential but thatâs just never going to be seen.Â
LUCY- And Dan, has it got much worse in these places since the war?
DAN- Look, the warâs definitely added pressure, and there are young disabled people that have had to be moved from institutions in the east just to keep them safe. Thatâs put pressure on the places in the west of the country where theyâre arriving where maybe the staff donât have the right skills, experience, they donât have the right resources, to actually be able to look after these children. So no doubt thatâs added pressure and made things worse.Â
But I think what weâre really trying to get to now is that this is an underlying system and a mindset that is widespread across the country, that is accepted throughout the population and that this is just the way things are. Weâve had these voices in response to the pictures that weâve shown saying that this something Ukraine needs to get a grip of, needs to start improving, as a pre-condition perhaps to European Union membership.Â
But it is such an impossible situation. Obviously changing this would not be easy even at the best of times. I appreciate the war makes everything tougher in Ukraine, but itâs got to happen is what the human rights investigators and organisations would say, that these young people could live such better lives, more fulfilling lives.Â
Itâs bizarre that this situation has persisted for so long, 30 years of independence and yet disabled people are still living exactly the same lives that they did when Ukraine was back in the Soviet Union. Itâs a weird time warp thatâs continued without challenge, it seems.
LUCY- Vitaly, even if money was thrown at it and there was more staff and more resources, how easy would it be to start to change the mindset that Dan and Ruth have been talking about and that you were mentioning as well?
VITALY- Well I think Dan is entirely correct to use the word âtime warpâ, because looking at the way streets are in Ukraine, there are no ramps and they look positively 1970s in many cases. So, well, to expect Ukrainians now to adapt the urban environment so that itâs more useable by disabled people, that may not be realistic at a time of war.Â
But in terms of social change and mental change, I think itâs happening, and that change is being driven by the whole pro-democracy and pro-European movement in Ukraine. Because while Ukraine has been integrated into the global community since independence, of course these values are being scrutinised and accepted in many cases, and one of these values is of course the way disabled people have to be integrated into society. That is of course a slow process, itâs a difficult process, but I think I can detect signs of it happening. So from that point-of-view thereâs definitely hope. But on the other hand, Ukraine has a lot of work to do. And yes, war complicates things hugely.
DAN- Of course.
RUTH- I think itâs important to remember as well with the disability, access is really important. Physical access. But a lot of the people that we met donât have physical disabilities, itâs hidden disabilities. So I suppose itâs kind of another layer of acceptance to understand that someone necessarily doesnât look disabled, but there is a lot more support that they might need.
LUCY- It was such important reporting, really profoundly moving as I said. Ruth and Dan, thank you so much.
MUSIC- Dramatic jingle.
NIKKI- Itâs so important that Dan and Ruth went to Ukraine to find out what is going on. It was obviously the hardest watch, but it was so, so important. Emma, where can you find out more?
EMMA- In the UK, you can see the report on ±«Óătv iPlayer. Itâs called âUkraineâs Stolen Livesâ. If youâre outside the UK, then the best place is the ±«Óătv News page on YouTube, or the ±«Óătv News website.
NIKKI- Enjoy the summer Access All-ers, and do us a big favour if you can, subscribe to us on ±«Óătv Sounds, and you know as we say, tell your mates, your family, even your work colleagues.
EMMA- And you know what you could do? You could take the pod on holiday and tell people internationally as well. When youâre in your resort lying on your sun lounger or whatever you chose to do, just tell your neighbour.
NIKKI- These stories matter and we want them to be heard, so help us spread the word. And thank you. Bye.
EMMA- Bye.
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