大象传媒

聽This is a full transcript of Disabled and out of money in North Korea as first broadcast on 13 March and presented by Beth RoseJITE- I got a few stares of course. I'm bald. I had a beard. I was in a wheelchair. I'm black. The first two that I went to said, "No, no, no, we probably can't do that." I didn't want to do something which was challenging for me only, rather than North Korea. Oh, well that's a tough place to go to.聽 [jingle: Ouch]BETH- I've been so excited about bringing you this Ouch podcast. A few months ago I received an email. It said, "Hi Beth, a friend of mine, Jite Ugono has multiple sclerosis, or MS, and uses a wheelchair. He's just about to travel to North Korea. Would you like to talk to him?" "Yes," was my answer, "very much so."I'm Beth Rose, and you're listening to the 大象传媒 Ouch podcast, and for a while Jite has been on my mind. From the day he flew to China to get his visa, to the five days he would spend in the country we know very little about. And finally, he's back. Also, just a quick note to say that this podcast was recorded long before the Corona virus outbreak.聽 [music]BETH- Hello.JITE- Hello, hi.BETH- So how was the trip?JITE- Everyone says surreal, but it was surreal. Being inside a communist country and being restricted. Also in a wheelchair, there are no provisions at all for wheelchair access and that kind of stuff. Most of the places I went to were only accessible by stairs, so they carried me, which was nice. And that's one of the good things about having a guide, because I had two guides and a driver.聽BETH- So you said you were thinking about this trip a year ago. It's the kind of trip that most people won't even think you can do, so why did you suddenly decide to book your holiday to North Korea?JITE- Well I've got MS so they said one of the treatments of MS could be stem cell therapy. So stem cell therapy involves chemo and the rest of it. I thought to myself why not do something as rare as stem cell therapy? It was almost like a redefinition of my identity. I didn't really want to be known solely because of MS or the treatment, because everyone's going to ask about the chemo. I wanted to do something else which was kind of equal and opposite.BETH- It's quite rare, stem cell therapy for multiple sclerosis isn't it?JITE- It is. I hadn't heard of it. Chemo for cancer, we know all about that, but as soon as she said chemo for this鈥� For me it was quite emotional because my mum died the year before of cancer and she went through chemo as well. It was a shock, but it was also some hope. It seems less bleak. What I have is Primary Progressive MS, a steady degradation of mobilities. And they have less treatment for that, so most other treatment comes for Secondary Remitting, when you have attacks and then you can recover.聽BETH- So what does the chemo do?JITE- Chemo reduces your immune system. So what they want to do is kind of knock out the immune system and then reintroduce the stem cells and then restart the immune system.聽BETH- That sounds quite an intense treatment.聽JITE- I was in hospital for a month. So I went in for chemo, I was in hospital for a week or so, first of all, came back out, did the injections, back into hospital for a month. It was tough going through, but easier when you do it in stages. You think, okay I'm going to do this chemo first, in ten days I'll do the injections. Bite size. So by the end of it it's like oh, I've done it. I think it taught me whatever I go through I have to be a bit more patient.聽BETH- How long ago were you diagnosed with MS?JITE- 2009.BETH- So you were quite young?JITE- I'm 45 now, so yeah, the symptoms got worse maybe six or seven years ago in terms of difficulty walking. And that's the main thing. The first thing was the eyesight, so the eyes were playing up and I thought maybe I should go to the optician. It didn't really make a difference. So it got progressively worse. I did an MRI scan and then the consultant said, "Well, it could be MS." So I was kind of aware and I kind of knew that it was something quite serious. So when he came back and he said MS. You make a decision about how you're going to deal with it.聽For me, it was you're not going to feel sorry for yourself because people go through worse. For me, it's only when I'm faced with stuff you realise you can do it. I didn't just want to survive. Because when you're diagnosed with stuff it's like getting through the day. Everyone says, "Oh, you're so brave. You went to work?" For me it's just one life, you can't spend it getting through the day, you want to do something else.聽BETH- So was it when you were having your chemo when you were in hospital, the idea for North Korea?JITE- It was actually the first consultation when she told me, "You're going to do stem cell therapy." They told me that I was going to be able to maybe walk with sticks and I thought, why waste it?BETH- I feel like a lot of people would have had similar thoughts but maybe thought South of France would be quite nice?JITE- It would have been challenging. If anyone said they were going to the South of France, oh okay. I didn't want to do something which was challenging for me only, rather than North Korea, oh well, that's a tough place to go to, regardless of whether you're in a wheelchair. It was important to me to do something which was challenging, not because of MS, not because of the wheelchair, but it was challenging.聽BETH- So how do you go about booking a trip? Can you go to a travel agent?JITE- I mean, that's what I did. So the first two that I went to said, "No, no, no. We can't do that, there's no access." And I was probably more determined. That's another lesson it taught me, it's more important for me that I wanted to do it. And no one was coming back to me to say, "Why don't you go?" So when the third person came back and said, "Actually, we could do that," the normal way of going to North Korea is through a group tour, with my condition anyway. You think about what the problems could be. Getting onto the coach. Holding people up.聽So my tour was me on my own. I had two guides and a driver and that was it. They sorted out the visa to China and once you get to China you get the visa to North Korea from China.BETH- Touching upon the issues of getting onto a bus, what is it like for you with MS? How does it manifest itself?JITE- My balance is a problem. I can't really use my left leg at all. My eyesight's a problem. Maybe sometimes my memory and my vocabulary. They're difficulties which arose mainly because I did chemo. We know that the drugs are quite aggressive and concentrated, so they give you lots of water to dilute and because you're given that you're given drugs to help you relieve that stuff, so you're peeing like every ten minutes.聽So it went down to probably once every hour and that became a problem and that affects your confidence, you're afraid to kind of go out, maybe there won't be toilets around, that's kind of what I was thinking about, going to North Korea.BETH- Did you even know about that? Is there information about toilets or accessibility?JITE- Not at all, not at all. It's only when I got there that I realised that the鈥� And sorry to go on about toilets, but it was important to me. [laughs] Okay, so in North Korea they had two types of toilets, they had the European toilets and then they had the Korean toilets, ground toilets, so you have to kind of balance, which I didn't even attempt. So everywhere we went to it was okay, "Is it a Korean toilet here or a European toilet?" Even the guides started to realise and started to know after a while.BETH- I mean, that's such a gamble isn't it, not knowing the accessibility, not knowing what the toilet situation's going to be like. I'm guessing this was all in your mind?JITE- Every problem has to have a solution. So before I went I'd got it up to you can pass an hour now, because I'd gone to the gym, I'd started doing core stuff, even in the plane, because it was ten and a half hours there. You think about the problems that you could face, it's personal of course, but also there are people around that can give you a hand.聽And that was another thing, getting vaccinations was a problem, because when you do chemo and your immune system is low they don't advise that you have vaccinations. So I was intending to go to Korea in September but that was super close to my stem cell.BETH- When you were flying, initially to China, what was going through our mind?JITE- It was just getting through that first bit, hoping that someone's going to be there to meet me. The luggage I even took I had to make sure that I could carry. That's one of the solutions with a wheelchair, you're going to have to push the luggage as well so it can't be too big. Two pieces of hand luggage is what I took. That's what I was thinking about, I wasn't thinking about Pyongyang yet, I was thinking about how to get to China.聽Beijing was packed, traffic everywhere. It was surprisingly western. The cars were German cars. In North Korea I had the guides, in China I didn't have guides, I had a person to take me from the airport to the hotel and that was it. So I didn't really have the confidence to kind of venture out. I got in a day before, so as soon as I landed in China I had to go and get the visa. As soon as you get the visa is when they give you a briefing, what you should and shouldn't do. The chap apparently had been doing it for 28 years, and no one had ever missed a briefing until me.BETH- Ah! [laughs]JITE- I mean, only because the person who picked me up said, "Oh, I can get the visa for you."BETH- So they were being helpful, but actually鈥�JITE- Yeah, so they went out and got the鈥� And I was appreciative, because getting in and out of the car was such a pain. And I am quite lazy naturally. If I can do without it then I won't do it, you know. So when they gave me an opportunity not to, oh okay. The travel agent contact in China was almost panicky on the phone, "No one's ever done this."聽BETH- Wow, and I bet your heart was racing at that point.JITE- To an extent, but I kind of knew what not to do. I mean, I'm not rude, and plus I'd seen stuff on YouTube and the guides tell you as well. So I was quite prepared. I flew into Pyongyang. The airport was a surprise. They only have a few planes that land for the day. They had one from Beijing, one from Shanghai and one from Moscow. There are soldiers everywhere, but the soldiers were, "Oh, look at this guy," I suppose maybe because I was a novelty in a sense. They'd never really seen someone in a wheelchair before. They were super helpful.聽I'd met the guides at the airport as well. I got a few stares of course. I'm bald, and they have like five haircuts. I had a beard, I was in a wheelchair. I'm black. So all those things together.聽BETH- So did you feel like you stuck out?JITE- I didn't feel like I could relax, only because you feel like you're always on. I couldn't be anonymous, there's always someone watching, and that's tiring.聽BETH- And did you feel like you were being watched by your guides?JITE- Maybe the brief was to watch, but it is different when you have a relationship with people. So I didn't feel that way. I suppose they were constantly on about how great the leader is and after a while it got a bit tedious. Everyone walked around with badges. And it's difficult to tell because they spoke the language quite a bit. I don't know what they're saying.聽BETH- They greeted you at the airport.聽JITE- Yes.BETH- Had they had disabled travellers before?JITE- I don't think they had. What happens is that when you go on your own there is no camaraderie, I was mostly alone, but the advantage is you could probably get closer to people. There's good and there's bad about it.BETH- What's it like, Pyongyang?JITE- For me it was super quiet. I mean here we have adverts and stuff, people are selling you stuff all the time, there is different, you have pictures of the leaders surrounded by flowers and you have to respect that. If there's an image of a leader you can't really take a photo of it and you can't stand in front of it obscuring it. Or you can't crop it. Apparently they check people's phones to see what they've taken.BETH- Did you take photos?JITE- I took photos but they didn't check. But everywhere was empty. The place is set up for tourists but there are not many tourists. You go into a restaurant and there are people standing around. The restaurants are empty. It's bizarre.聽BETH- So it's not really like a bustling city?JITE- Not at all. Actually I went during鈥� King Il Sung who's the grandad of this present leader, it was his birthday, so there were two days of celebrations. I think there were more people on the street than normal, and then they had volunteers picking up stuff or gardening or鈥� I mean, because it's a communist environment they pay for everything but you have to work. They've got big roads, no cars.BETH- Wow.聽JITE- Yeah. The days were quite long. Maybe eight o'clock they'll come for me and then eight o'clock in the evening I'd finish. So there was always something to do and you were always with people. I think they had five channels, that was about it.BETH- TV channels?JITE- Five TV channels. On the channels they have the leader, Kim, pointing at stuff. He designed the theme park.BETH- What's the tourist trail like?JITE- There is an itinerary, so you would go to the war museum, flower exhibition. I went to their subway, it's the deepest subway in the world. So everything's the best in the world or the tallest in the world.BETH- How did the subway compare to the tube?JITE- It was more opulent. I only saw two of them and I think those are the two they show people, so maybe the others are less. There are chandeliers and stuff.聽BETH- And the restaurants, you said you went into one, but they've got all the staff just waiting around?JITE- Yeah, the restaurants seem to be for tourists, and because I was on my own, seven, ten people just standing around looking. I went to a casino, which was strange.聽BETH- Oh, okay?JITE- Yeah. But the casino was in the hotel. I think I was the only one in there. So when I went to North Korea I didn't take enough cash, and that was a problem obviously because no cards. So the guys were like, "You need some money? Go to the casino, you can change your money."BETH- Oh, I thought you were going to say to like gamble and win.JITE- At first I went to change money, but they didn't take sterling, they took US dollars and euros, but I didn't have either, so they allowed me to gamble, so I did.BETH- Did you win? Did you get some money?JITE- Yeah, I did. I don't want to get used to it. [laughs]BETH- What game did you play?JITE- Black Jack. I didn't know what was going on, but people around, they were almost cheering, and I was thinking by the time I won a hundred dollars I thought it's time to go, it's time to go. And everyone's around you willing you on and you don't want to disappoint them but you think okay, I'm going guys.聽BETH- Is it expensive then, if you ran out of money and you're having to gamble to boost your-?JITE- To boost. Okay, so I mean they have their own currency and they don't let you take the currency out.BETH- I bet your guides quite enjoyed being in the casino.JITE- The guides said, "Oh, we're not allowed in." Even when they came up to my hotel room I had to have Al Jazeera because that's the only English speaking channel, but they were almost transfixed. They were shaking their heads. Look around the world, look how happy we are type of thing. So you kind of understand why they would let Al Jazeera in, because Al Jazeera can be quite, look what's happening around the world, the protests here, the protests there.聽BETH- And did you find people were willing to help you?JITE- I think it was more because they see you as being vulnerable. "Oh, you're not comfortable, let me move your legs." So you always get somebody helping, which is not necessarily what you want all the time. Because you want to be able to be self-sufficient. Certainly in London people are a bit more patient to offer, "Okay, how can I help?" and then they stand back. In Korea it was, "Oh, we can do that for you." [laughs]BETH- Did you see any other disabled people out and about?JITE- No, I didn't.聽BETH- No one at all?JITE- I didn't at all. One of the guides was quite insistent on how great their society is. That's why they stay kind of thing, away from everyone else, and they obviously saw it as a good thing.BETH- Oh, that's interesting. I was going some research, and there's a lot of reports from the UN and different charities where they say basically they send people聽 away in an out of town community.聽JITE- Yeah, they don't expect you to try. So maybe that was part of it, they were almost surprised that this person is doing something on their own.聽BETH- And were they quite surprised how you just got on with everything?JITE- Yeah, I suppose. Maybe they were. So even when I'd be going down the road people would lean over and look. They weren't rude about it. They would look, they were curious, but they weren't intrusive. And sometimes you look and they look away, except the kids, so the kids would be staring. But that's normal though, even in London you'll get kids staring. One of the guides took a video of me being lifted up the stairs, and it was quite tough to watch because you don't really see yourself as being vulnerable, except when you see it.聽It's like hearing a recording of yourself and you think oh, do I sound like that? Or do I look like that? Am I really that vulnerable kind of thing? No wonder everyone helps. [laughs] It was tough to see. I didn't really see the footage until I got to the hotel and you kind of think, you know, is that how it is? They were helpful, and it sounds ungrateful almost, but it is what you think about.聽It's a lack of confidence to think people only help you because you look so vulnerable. Maybe people are just nice. And that was one of the good things about going to North Korea. People say that Londoners are quite cold and I don't find that, Londoners can be helpful, and especially if you're patient enough. And MS for me does that, it allows you to be patient.聽BETH- So what kinds of things is nice to have help for?JITE- Probably getting in and out of cars. In London not so much, in London you kind of want to get strong. I know that I'm going to have to get in a car, and not everybody gives the same level of help, so you have to be self-sufficient. In North Korea there's no need. And I'm never going to be in North Korea again.BETH- How did the access pan out? Because that was the big mystery wasn't it really? I mean, you had no idea.JITE- It was just people lifting me. Only one place, the museum was difficult.聽BETH- Your guides would just pick you up would they? Pick up your wheelchair.JITE- Yeah, with me in it.BETH- Wow, and you're like six foot plus aren't you?JITE- Yeah.聽BETH- How fair was your MS when you were out there?JITE- For me you tend to pace yourself, so fatigue is a problem, because it's such long days and it's all the time. I got tired and my symptoms got worse. The eyesight, so I couldn't really take that many photos of the place because I couldn't see at all. You'd be driving past something and oh, that would make a good photo, but you can't really stop because it's just such a pain to get out of the car, get your wheelchair. But otherwise you just couldn't see.聽BETH- Was that worrying or were you kind of prepared?JITE- I don't think I was prepared, and I think that's partly the problem. If I knew how difficult it was then I probably would have been more anxious about it. If you have to do it you do it. A lot of people with MS have depression. I know that could be a problem so I face it before it comes. So you met this challenge? Oh that's a good thing. You did chemo? Oh, that's good. So when it comes to another challenge, I did this before. An example of trying to do practice walking. Yesterday I walked to the lift, so that means I can walk to the door. You know, they're small victories. So North Korea in itself, it's not the end of the story, it just helps, okay, next time I'll do something else.聽When I was younger there was more depression, I was less able to face it. As I get older I'm more aware of the signs, so there are times of lows like anyone else but they are not enduring because I'm aware that okay, I've done this bit. So anxiety's not the end of the story, but I'm anxious about maybe travelling. I'm anxious now, if I need to go out you're thinking oh, is there disabled access? Are there toilets? So there's always something to think about, but what helps with my anxiety is knowledge I think. I went online and I checked out North Korea, where I'm going to be staying, so that kind of eased it a bit. Thinking badly of it doesn't help.BETH- So in North Korea what were your highlights and your lowlights?JITE- The lowlights were that video of seeing myself, and the highlights were the people. Regardless of the system, communism or capitalism, the people generally, they're happy and they're helpful, they smile, and for me it's a good thing, you know, experience. Everyone's been to other places. Well when you say Pyongyang, okay, that's different. I only went for five days in Pyongyang, but for longer like ten day tours, they go outside Pyongyang. For me that would be more difficult because wheelchair access would be impossible.聽聽BETH- And going full circle almost back to your stem cell therapy, did it work for you?JITE- I think it did cognitively. The memory's improved. And people always talk about brain fog. I didn't think about it until after the treatment, because you don't realise that you are slowly getting worse. There's a difference mentally. Word finding is far better. The walking around could be better. I think they managed my expectations quite well. They said maybe it will stop the degradation, the progression of the condition. It will be a few years to kind of know. And the only way they can tell is by MRI scans.聽BETH- What kind of reaction did you get from the doctors that you see regularly?JITE- When I said when I was going?BETH- Yes, or when you came back.聽JITE- I mean, I didn't say I was going. I didn't tell anyone I was going because doctors would be cautious. They'd say, "No, don't do it." When I came back I spoke to one of them, I said, "I went to North Korea," he was like, oh well.聽BETH- I guess now that you're back they're really thrilled that you went, but obviously were going to be cautious.JITE- But that's kind of what it is, the conversations that I have about North Korea. It's not about stem cell therapy. So ultimately I'm now thinking more about the positive and not necessarily like a negative, because stem cell therapy was a challenge, but it's a passive challenge, because it's something that happened to me. Going to North Korea was something I did. I don't want to be passive. Why not go out there and kind of look for stuff?BETH- What would you have done if it had gone wrong?JITE- Yeah, that's a good one. There were no contingency plans at all.聽BETH- I love the idea that you were a new traveller, disabled and out of money in North Korea.JITE- Yes. [laughs]