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Living with a disability in Gaza and Ukraine

What鈥檚 it like to have muscular dystrophy in Gaza and a learning disability in Ukraine?

We hear what it鈥檚 like to live with a disability in a war zone.

Boshra is an 18-year-old woman who lives in Gaza and has muscular dystrophy. She and Oleksii, a man with a learning disability from Ukraine, share their experiences with presenter Emma Tracey.

Emma also speaks to George Graham, CEO of Humanity and Inclusion, a charity which supports disabled people living in conflict areas.

Presenter Emma Tracey
Production by Daniel Gordon and Alex Collins
Recorded and mixed by Dave O鈥橬eill
Special thanks to Irena Taranyuk, 成人论坛 Ukrainian Service
Edited by Farhana Haider

Is there an election issue affecting disabled people you think we should be talking about? Get in touch, we really want to hear from you. You can email us accessall@bbc.co.uk or message @bbcaccessall on Twitter/X or Instagram. Our WhatsApp number is 0330 123 9480, please begin your message with the word ACCESS.

Release date:

Available now

25 minutes

Transcript

29th May 2024

bbc.co.uk/accessall

Access All 鈥 episode 107

Presented by Emma Tracey

EMMA-听听听听听听听听听听 It cannot have escaped your attention that there is a General Election coming up on 4th July. I want you to tell me what interests you about it, what you want to hear, who you want to hear from. Is it about access to the information you need to make your choice? Is it about being able to vote in secret? Or do you want to know what the different parties are promising to do for disabled people if they get into government? Please tell me what you want to know about the upcoming general election. You can email us accessall@bbc.co.uk. I鈥檓 going to be keeping a very close ear on our WhatsApp because I would really, really love your voice notes, your voice messages; I want to hear your voice, I want to hear your passion. Tell me what you want me to explore, talk about, question for you. The number is 0330 123 9480. And if you can put the word 鈥淎CCESS鈥 before your message that will really, really help us to find it. You can also find us on Instagram and X @成人论坛AccessAll. Do get in touch because we want this to be as relevant to as many of you as possible. On with the show.

MUSIC-听听听听听听听听听听 Theme music.

EMMA-听听听听听听听听听听 Hello and welcome to Access All, the 成人论坛鈥檚 weekly podcast dedicated to news and stories about disability and mental health. I鈥檓 Emma Tracey, and this time on the podcast we鈥檙e going to be speaking to disabled people in conflict zones. We鈥檒l hear from Boshra, who鈥檚 a wheelchair user living in Gaza, and we鈥檒l hear from Oleksii who鈥檚 got a learning disability, and his mum Raisa, and they鈥檙e in Ukraine. If you like what you hear please subscribe to us on 成人论坛 Sounds or wherever you get your podcasts.

The war in Gaza has made worse an already very tricky situation for disabled people there. As you know on Access All disabled people are at the heart of every story we do, and in this case it鈥檚 been very tricky to connect with disabled people in Gaza because of the war going on there. Last week my colleague, Alex Collins, managed to speak with Boshra on the phone. Boshra is 18 and she鈥檚 got muscular dystrophy and uses a wheelchair. Let鈥檚 take a listen to what Boshra had to say:

BOSHRA-听听听听听听听 [Via translator] before the war things were different. It wasn鈥檛 easy. There was no support for people with my condition, especially in school. I could only go to classes on the ground floor as I couldn鈥檛 use the stairs. But my dad adapted the house to help with my condition. There were handrails near the toilet, and more handrails to help move me when I wanted to get around the house.

ALEX-听听听听听听听听听听听听 So, life was hard before the war, but things got even harder?

BOSHRA-听听听听听听听 Absolutely. I had to leave my house in the east of Jabalia in the first month of the war, after evacuation orders were given to head south. I now live in a tent with 20 people, which is difficult because I can鈥檛 lean on the plastic edges of it as it won鈥檛 take my weight. I need a wheelchair to go to the toilet, and I need people to help me. It鈥檚 been very, very hard to get one. I was borrowing a wheelchair from someone else but I lost it, and so now I am borrowing another one from some other people, when they let me use it that is, which is not often. I鈥檓 telling my story on a crowdfunding page, a Go Fund Me website to help myself and my family. The situation is very serious and I could die at any time. I want to raise enough money to leave Gaza. Once I get the money I鈥檒l get a wheelchair.

ALEX-听听听听听听听听听听听听 It sounds very loud where you are.

BOSHRA-听听听听听听听 It鈥檚 always noisy: the drones, the bombings, the fighting. It鈥檚 obviously not great but what can we do? We鈥檝e got used to it. We might have to move. We are in Deir-el-Balah, but we might have to move to Khan Yunis. It鈥檚 hard to move from one place to another; I have to have help from my family. I had to go to the hospital last month to get my heart checked as it鈥檚 affected by my condition. The war just made everything more stressful. I鈥檝e had no support the past seven months, nothing from any of the aid agencies.

ALEX-听听听听听听听听听听听听 Do you know other people with disabilities? What have they been telling you?

BOSHRA-听听听听听听听 There are lots of people now in Gaza with disabilities, people who have lost limbs, their hands and their legs. They need things like prosthetics and walking sticks, but in Gaza they鈥檙e hard to find.

EMMA-听听听听听听听听听听 Thanks to Boshra there in Gaza. And we have been trying to keep up with Boshra and find out what鈥檚 happening with her, considering what鈥檚 been happening in Gaza over the last few days, but we haven鈥檛 been able to get back in touch with her.

听听听听听听听听听听听听听听听听听听听听听听 With me now is George Graham from a charity called Humanity & Inclusion. The charity works in 60 countries, including hostile environments like Gaza. George, you鈥檙e really welcome, thank you for joining me.

GRAHAM-听听听听听 Thank you for having me.

EMMA-听听听听听听听听听听 You鈥檝e just been listening to Boshra鈥檚 story there, George. Is it typical of what you鈥檝e been hearing from disabled people in Gaza?

GRAHAM-听听听听听 Yeah, it鈥檚 very typical I鈥檓 very, very sad to say. The things she talked about include the overcrowding in the shelters, which for many people with disabilities makes life very, very hard, including really personal and difficult things like going to the toilet suddenly becomes much, much harder, particularly in the context where water is scarce and there鈥檚 severe overcrowding. She talked about the difficulties of evacuating, and as you know there have been multiple evacuation orders. Many of the people we work with resisted moving because they couldn鈥檛 or didn鈥檛 feel they were able to initially, until finally they realised that the alternative was to risk being bombed, so they moved. And she talked about the bombing having driven up the numbers of people with amputations. And there are fears that the numbers of children who are being amputated through injuries caused by bombing in Gaza will be greater than any recent conflict.

EMMA-听听听听听听听听听听 I guess we鈥檒l find out more and more about that as time goes on and as things change in Gaza as well.

GRAHAM-听听听听听 Yes, there鈥檚 lots about the situation that we will only learn about when hopefully the fighting stops and we can really assess the situation. But there are so many barriers to providing support for people with disabilities in a place like Gaza. As everybody knows, getting aid in is very, very difficult, so people who may for example have not been able to evacuate with their assistive devices, whether that鈥檚 crutches or anything that they need in order to get by, getting new assistive devices for those people is a huge challenge. And then people who rely on regular daily or frequent rehabilitation are now finding those services are non-existent, so they鈥檙e facing enduring pain often. It鈥檚 really, really difficult for so many people.

EMMA-听听听听听听听听听听 What was life like for disabled people in Gaza before this war?

GRAHAM-听听听听听 Well, the data that we have shows that before the war escalated after October 7th there were over 20% of households in Gaza who had included at least one person with disabilities, and nearly 10% of households had at least one child with disabilities. So, that鈥檚 quite a high rate. And it was tough because even before the current fighting Gaza existed under a blockade, which meant that by and large people couldn鈥檛 leave and things could come in but only in a very controlled way. Which meant that the basic support for people with disabilities was always difficult, but not impossible. So, people were able to live, were able to have food and to get by, were able to have an education, but with great constraints.

EMMA-听听听听听听听听听听 Boshra says that none of the aid agencies have helped her. I mean, you can鈥檛 speak for the whole sector, but what do you make of that allegation?

GRAHAM-听听听听听 Tragically I鈥檓 not surprised. It鈥檚 not that people aren鈥檛 trying; there are lots and lots of aid organisations that are trying very hard and doing a lot of work. We have 200 staff and volunteers in Gaza doing lots and lots of good work, rehabilitation, providing assistive devices, hygiene kits, psychosocial support and so on. But firstly, 200 people is not many in a population of over 2 million. And secondly, all those staff and volunteers from our organisation and every other charity that鈥檚 trying its best in Gaza, they鈥檙e also civilians, also suffering the same issues, also hiding in shelters, also having to look after their own families, also suffering grief and loss and of course fear. So, it鈥檚 a really hard situation. It doesn鈥檛 surprise me sadly that many people are not being reached.

EMMA-听听听听听听听听听听 So, what other stories have you heard from your people in Gaza or other disabled people there?

GRAHAM-听听听听听 For example, I heard about a man called [Khaled] who has severe mobility impairment. So, he talks about how challenging a situation is. He鈥檚 in a displacement camp, he says the location is just not suitable for persons with disabilities. He says he cannot access the toilet because it鈥檚 not adapted for someone with his level of mobility, disability. He talks about the overcrowding, there鈥檚 no space to move his wheelchair; he doesn鈥檛 have his medicines with him; the place is unclean. He says, and I think this is super sad, that he鈥檚 avoiding eating because he鈥檚 reluctant to use the inadequate toilet facilities. That鈥檚 the sort of conditions.

EMMA: 听听听听听听听听听 And what are your people saying in Gaza today, after the weekend that it鈥檚 been there?

GEORGE: 听听听听听听 Words almost fail. People have been living, not just in great hardship, but also with great fear, you know, in terror, for a very long time. And over the weekend, that only escalated further. Boshra said people are used to it. I mean, I don鈥檛 know if you can ever really get used to living in that awful context. Also, all of our staff and volunteers, as I said earlier, are also civilians, they haven鈥檛 eaten properly for six months because there鈥檚 such a scarcity of food. So the conditions that these people are in is really hard, and the violence over the weekend is just further degrading the situation in which they鈥檙e living.

EMMA-听听听听听听听听听听 Thanks for talking to me about Gaza, George, stay with us, because we鈥檙e going to talk about the war in Ukraine now and how that has impacted disabled people鈥檚 lives. It鈥檚 been going on for a lot longer than the current fighting in Gaza. One of them is Oleksii, I spoke to him and his mum Raisa. And Raisa is the board director for a charity called Djerela which helps people with learning disabilities. Oleksii, her son, has a learning disability himself, and he鈥檚 been through quite a lot. His hostel where he lived in Kyiv closed just as the war started. He went back to live with his family; that was tricky. Then it was thought it was a good idea for him to go to Denmark, but that threw up its own challenges. So, let鈥檚 hear them tell their story. And Irena, from the Ukrainian Service, was also in the studio. She translated Oleksii鈥檚 words for me and my words for him:

EMMA 听听听听听听听听听听 Tell me a bit more about your son Oleksii, Raisa. What was the effect on Oleksii when his hostel closed when the war started?

RAISA听听听听听听听听听听听听 Because of his anxiety, because he has to know what will happen tomorrow, what will happen to him and who will be with him. And of course it was a stress that people changed. His everyday occupation changed. Everything in his life changed, and it was a big stress.

EMMA-听听听听听听听听听听 Do you remember when your hostel closed, Oleksii?

OLEKSII--听听听听听听 [Via translator] I was not myself because I didn鈥檛 know what to do.

EMMA-听听听听听听听听听听 And how did you feel? What did it feel like? Were you sad?

OLEKSII--听听听听听听 Yes, sad.

EMMA-听听听听听听听听听听 Were you scared?

OLEKSII--听听听听听听 Da.

EMMA-听听听听听听听听听听 Did you know what was happening? Did you know about war?

OLEKSII--听听听听听听 Yes. The worst thing was I couldn鈥檛 go anywhere; I had to stay indoors all the time.

EMMA-听听听听听听听听听听 And do you like going outside?

OLEKSII--听听听听听听 Yes, I do.

EMMA-听听听听听听听听听听 You鈥檝e gone quiet. I bet you鈥檙e not really that quiet in real life. I bet you're a chatterbox. Raisa, what were the problems caused by the start of the war?

RAISA-听听听听听听听听听听 I had to continue working. I had to fundraise, I had to run the organisation, to write different documents, projects etc. So, I couldn鈥檛 dedicate all my time to him. And he needs 24-hour attention. He needs his life to be structured. Although 40 years old but still he needs to be said, 鈥淗ey get up, go and have your breakfast, go and brush your teeth鈥 and so on. He needs all this attention, and do this, do that. And then he started to escape from here. He escaped and then the guards shoot on him.

EMMA-听听听听听听听听听听 He got shot at?

RAISA-听听听听听听听听听听 Yeah, meaning not him, but they shot into the air because they asked him 鈥淧lease stop, you can鈥檛 go,鈥 But he continued going away, which was prohibited, and so they shot into the air just to frighten him, to stop him.

EMMA-听听听听听听听听听听 And did it frighten him?

OLEKSII--听听听听听听 Of course I was scared because it was a checkpoint, and you cannot walk around checkpoints. You know that, don鈥檛 you?

EMMA-听听听听听听听听听听 But sometimes you couldn鈥檛 help it because you needed to escape?

OLEKSII--听听听听听听 Yeah.

EMMA-听听听听听听听听听听 When did Oleksii go to Denmark and what happened there?

RAISA-听听听听听听听听听听 He went to Denmark in April 2022 with a group of his peers.

EMMA-听听听听听听听听听听 And did that feel like a good idea at the time?

RAISA-听听听听听听听听听听 At that time it was a good idea. You know, any travel is taken as an adventure by him. When it lasted one week, the second week, the third week and then he disliked it and he wanted back home. Because of his challenging behaviour, he was placed into the mental hospital.

EMMA-听听听听听听听听听听 Gosh, that must have been really difficult for all of you.

RAISA-听听听听听听听听听听 Yes. My daughter she decided to take him back home.

EMMA-听听听听听听听听听听 I mean, people will find that so unusual to take someone back to, like, a war zone, but his life was just so difficult.

RAISA-听听听听听听听听听听 Better to be here than to be placed in the mental hospital.

EMMA-听听听听听听听听听听 Oleksii, do you remember Denmark?

OLEKSII--听听听听听听 I do remember. We had a bit of a row, we had an altercation with one of the girls there and I had to be hospitalised. Yes, it was the case of some argument, and after that they said they won鈥檛 take me there anymore.

EMMA-听听听听听听听听听听 Are you glad to be back at home in Ukraine?

OLEKSII--听听听听听听 Da. Da

EMMA-听听听听听听听听听听 Why?

OLEKSII--听听听听听听 Because it鈥檚 home. Because it鈥檚 good there. Because it鈥檚 hostel and Bohuslav and my mum, Raisa Ivanova.

EMMA-听听听听听听听听听听 George Graham, from Humanity & Inclusion, what do you feel about what you heard from them?

GRAHAM-听听听听听 Well, both that it鈥檚 very sad to hear how hard it鈥檚 been for them, but also that it鈥檚 quite familiar that we hear similar stories a lot in Ukraine. But actually also a positive thought which is Raisa has done amazing things to support people with disabilities, and she鈥檚 not alone in Ukraine in that respect; that Ukraine is a country where there are a number of Ukrainian organisations that support people with disabilities of different types. And that has made it a different type of place for us to work in. Obviously the war is heavy and it makes it a very, very hard context to work in, but we鈥檙e able to work alongside some really fantastic people.

EMMA-听听听听听听听听听听 You work with people with learning disabilities in Ukraine and other places, what are the types of help and support that you provide for them? And what do they need at times of war?

GRAHAM-听听听听听 The types of support we provide, safe spaces, mental health and psychosocial support, to the extent that we鈥檙e able to. The challenges in Ukraine are that there are a very large number of people, typically the most vulnerable people, who have been left behind by events and by the response to those events. So, people who maybe didn鈥檛 have the resources to move, so people in the far east of the country where the fighting has been most intense, who have not been able to move to the west of the country or even to other countries, and people who don鈥檛 have the resources to look after themselves.

And some of the stories are really hard to hear. There was one guy who was out one day and then he heard an explosion and his home had been destroyed. So, he went to a cinema to seek shelter, and he stayed in the cinema, that鈥檚 where he lived in an abandoned cinema. But the heating didn鈥檛 work in the cinema and the winter came and he got colder and colder and colder until he had frostbite in both of his legs and they had to be amputated. So, these people they鈥檙e in remote locations, often close to or even beyond the frontlines, and a lot of people are really cut off. So, a big part of our job is trying to find those people and trying to provide support for them so that they have somewhere to go and so that we can help them.

EMMA-听听听听听听听听听听 That鈥檚 so interesting, cos people who had a support system and the support system left but they weren鈥檛 able to, and how they鈥檝e had to sort of figure things out for themselves when they haven鈥檛 been able to and needed a lot of help before. Tell me a bit about Humanity & Inclusion and about what you guys do that other people don鈥檛 do. What is the hole in the services that you fill that other agencies and other charities aren鈥檛 quite managing to do?

GRAHAM-听听听听听 In non-conflict, non-humanitarian contexts there鈥檚 a lot of great stuff happening to support organisations or persons with disabilities to promote disability inclusion in all sorts of ways, including in often very poor countries. So, that鈥檚 a positive. And we do a lot of that. But what we also do, and where I think we are much more alone, is this work in war zones and in other acute humanitarian emergencies. But there are very few and often no other organisations that are thinking about people with disabilities, and certainly who have specialism in supporting people with disabilities.

EMMA-听听听听听听听听听听 And do you think part of that is the lack of disabled people working in this sector?

GRAHAM-听听听听听 Yeah, I think that鈥檚 definitely part of it. I also think that people don鈥檛 feel confident, they don鈥檛 feel they have the expertise to support people with disability so they don鈥檛 see people with disabilities as being a sort of a primary target group, if you like, for them.

EMMA-听听听听听听听听听听 And why is that? Why do they not see that?

GRAHAM-听听听听听 I should say that everybody who works in humanitarian aid has got the best of intentions and by and large is a very good, well-motivated person trying to make the biggest difference they can. They might be thinking okay,鈥 I don鈥檛 have the expertise to meet the needs of people with disabilities, hopefully someone else does.鈥 And of course not many people do. So, a big part of our job is advocacy to other humanitarian organisations, so I mean charities but also the United Nations, and also often governments as well, to make sure that in all the coordination discussions when they鈥檙e working out who鈥檚 working where, who鈥檚 doing what, there are explicit conversations about how many people are we aware of? What鈥檚 the data showing for people with disabilities? How are they being reached? Who鈥檚 reaching them? And that鈥檚 constant work because if people like us are not in the room saying 鈥測ou need to do that,鈥 then sometimes it doesn鈥檛 get done. And the results are that people like we鈥檙e talking about in Ukraine do not receive any support and they remain neglected.

EMMA-听听听听听听听听听听 And is it an expensive thing to make sure that all the organisations, all the relevant parties are aware and trained and knowledgeable enough to say this is one of our core groups, and we will support them as well as any other group that鈥檚 on our list?

GRAHAM-听听听听听 I鈥檓 going to say no and yes. I mean, we cannot allow money to be the barrier to disability inclusion. Sure, obviously there are some forms of support for people with disabilities that cost lots of money, and some training might cost lots of money. And also I should say there鈥檚 a lack of money across the board for all forms of humanitarian aid, right. The humanitarian aid organisations we exist in a permanent context of not having anything like enough money to do the things that... So, it鈥檚 normal not to have enough money [laughs] and it鈥檚 just about how you prioritise your effort in that context.

EMMA-听听听听听听听听听听 George Graham from Humanity & Inclusion, thank you so much for joining me and telling me about your work, and about life for disabled people in Gaza and Ukraine.

GRAHAM-听听听听听 Thank you for having me.

EMMA-听听听听听听听听听听 Another episode of Access All has come to an end, and what an episode it has been. Thank you to George Graham from Humanity & Inclusion. Thanks to Oleksii and Raisa in Ukraine. And thanks to Boshra in Gaza. If you want to contact us about anything you鈥檝e heard on this episode or about the General Election, you can email accessall@bbc.co.uk, or find us on the socials @成人论坛AccessAll. Thanks for listening. Goodbye.

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