大象传媒

NIKKI- We were going to take a summer break this week but we鈥檝e had a re-think, because there鈥檚 been such a strong reaction to some recent powerful 大象传媒 journalism about disability and we want to cover it on Access All. What you鈥檙e about to hear is distressing, but we think you鈥檒l want to know what鈥檚 happening. It鈥檚 a bit different from what we normally do, but we think you鈥檒l understand why we鈥檙e covering this.

EMMA- So in this week鈥檚 Access All, you鈥檒l hear about the shocking widespread abuse and mistreatment of disabled people in Ukraine. 大象传媒 News gained access to five institutions where they found teenagers restrained and adults lining cots for years. As Nikki said, advance warning, what you鈥檙e about to hear is very upsetting.

MUSIC- Theme music.

NIKKI- I鈥檓 Nikki Fox, and I am at Access All HQ in London.

EMMA- And I鈥檓 Emma Tracey, and I鈥檓 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 大象传媒鈥檚 correspondent, Dan Johnson. And I know how incredibly hard they鈥檝e worked on this story. Clegg, as we call her, she is also my Producer, and I know she has been passionate about investigating what鈥檚 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 it鈥檚 just heart-breaking.

EMMA- Dan and Ruth spent time exploring Ukraine鈥檚 network of outdated institutions with Disability Rights International.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 we鈥檙e going to hear some of it now. They鈥檙e 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, girls鈥� education in Afghanistan, and I have to watch the stories a few times over before I can go on air. It鈥檚 the way I prepare myself, because I鈥檓 so upset often by what I鈥檝e seen, and I want to be professional obviously once I鈥檓 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, I鈥檓 really sorry to bring that to people, to show that to people. But then again, you can鈥檛 look away and you can鈥檛 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 hasn鈥檛 been that spotlight.聽

So that鈥檚 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 it鈥檚 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, it鈥檚 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 they鈥檙e living with, what they鈥檙e coping with.聽

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, you鈥檝e been involved in this story for years. How did that come about? Why did you get involved?

RUTH- Well I鈥檝e worked in disability for quite a few years, and I鈥檇 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 that鈥檚 very independent. It was trying to join the EU at that point even. So I thought this needs to have more insight, more scrutiny.聽

It was only then that they鈥檇 started to reform the situation and reform what was the institutionalisation of children. I mean this has been a problem obviously that鈥檚 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 Ukraine鈥檚 tapestry, part of its life, it鈥檚 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 what鈥檚 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 I鈥檓 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- He鈥檚 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 we鈥檙e meeting. At one point, the director of this institution was really proud of himself, 鈥淲e鈥檙e doing really well because we鈥檝e only lost two boys this year. Last year we lost six because we had a problem with the heating鈥�. So, it鈥檚 obviously long been a problem. Then with the war things start to-

LUCY- Dan called it in the piece 鈥楿kraine鈥檚 shameful secret鈥�, 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. It鈥檚 widely accepted. It鈥檚 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 they鈥檙e seen below other people. So the quality of life that鈥檚 seen for somebody with a disability and without a disability, are completely different. Hence why it鈥檚 quite acceptable for people to live in that kind of environment, be locked up in a cot.

VITALY- You鈥檙e 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 there鈥檚 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.聽

In Ukrainian high-rise buildings, for example, forget it, it鈥檚 not possible to use a wheelchair. So even if you may not be in an institution, you would struggle just to get about. And that鈥檚 a huge problem that cannot be explained away by a lack of money. There鈥檚 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.聽

DAN- Yeah.

LUCY- And you did manage to talk to some parents, mum and dad who were there seeing their son.聽

DAN- Yeah.

LUCY- What did they say to you?

DAN- I think it鈥檚 that sort of attitude that really sums up. Everybody who was involved in the system seemed to sort of accept that, that there just wasn鈥檛 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 they鈥檙e 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, he鈥檚 been seen by a British neurologist to try to improve his condition. So they鈥檙e not naive, they鈥檙e not ignorant, but they鈥檙e 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 wasn鈥檛 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 that鈥檚 how things would be if they lived in the UK, they wanted that, but they were still accepting that it just wasn鈥檛 going to happen, it wasn鈥檛 realistic for them, and therefore that鈥檚 the place that he is best spending the rest of his life. It鈥檚 so, so sad to see that potential, that love, that is not able to flourish and thrive.

LUCY- I feel like it鈥檚 Vasil鈥檚 case that will stay with me, because there he is, he鈥檚 tied up for hours and hours outside.

DAN- I know, yeah.

LUCY- He鈥檚 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, 鈥榊ou know, this person鈥檚 going to stay with me after this鈥�?

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, they鈥檇 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 he鈥檚 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- There鈥檚 a spark of recognition. He remembers Helena鈥檚 last visit. You met Oleg before.

HELENA- Yes. I鈥檝e been here about seven years ago and Oleg was here. [Brief conversation in Ukrainian with Oleg]

DAN- Hi. It鈥檚 good to meet you.

HELENA- He said, 鈥淥h wow, you鈥檙e a journalist鈥�. [Speaks to Oleg in Ukrainian]

DAN- It鈥檚 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 he鈥檚 got so much potential but that鈥檚 just never going to be seen.聽

LUCY- And Dan, has it got much worse in these places since the war?

DAN- Look, the war鈥檚 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. That鈥檚 put pressure on the places in the west of the country where they鈥檙e arriving where maybe the staff don鈥檛 have the right skills, experience, they don鈥檛 have the right resources, to actually be able to look after these children. So no doubt that鈥檚 added pressure and made things worse.聽

But I think what we鈥檙e 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. We鈥檝e had these voices in response to the pictures that we鈥檝e 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.聽

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 it鈥檚 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.聽

It鈥檚 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. It鈥檚 a weird time warp that鈥檚 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 鈥榯ime warp鈥�, 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 it鈥檚 more useable by disabled people, that may not be realistic at a time of war.聽

But in terms of social change and mental change, I think it鈥檚 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, it鈥檚 a difficult process, but I think I can detect signs of it happening. So from that point-of-view there鈥檚 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 it鈥檚 important to remember as well with the disability, access is really important. Physical access. But a lot of the people that we met don鈥檛 have physical disabilities, it鈥檚 hidden disabilities. So I suppose it鈥檚 kind of another layer of acceptance to understand that someone necessarily doesn鈥檛 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.

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NIKKI- It鈥檚 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 大象传媒 iPlayer. It鈥檚 called 鈥楿kraine鈥檚 Stolen Lives鈥�. If you鈥檙e outside the UK, then the best place is the 大象传媒 News page on YouTube, or the 大象传媒 News website.

NIKKI- Enjoy the summer Access All-ers, and do us a big favour if you can, subscribe to us on 大象传媒 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 you鈥檙e 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.