The Independent Film Show "Songs of Entoko" at Kyoto Kyoiku Bunka Center, September 12, 2020 (Session 2)

Hungarian Language Sessions for beginners

MC: We want to have a break, but before that, please take a listen to a brief notice from Kokopelli121. It’s about the newly-started ‘Hungarian Language Sessions for beginners’. P.E.-san, could you take over now?

P.E.: Hello, everyone. I am Papai Eszter. I’m from Hungary. Thank you.
(Applause)

P.E.: I’ve been a member of Kokopelli121 since the middle of August. Now I’m leading this Hungarian Language Sessions.
Let me introduce my background a bit. I’ve been out of my home country for 10 years now. One of the reasons is, I was very intrigued to learn about different cultures and languages as a child. I especially was drawn to these two countries, Britain and Japan. So I have lived in both of them. I truly enjoyed my life abroad, interacting with such inspiring local people anywhere I went.
But one thing was missing. I could not share the things which I had cultivated in myself in Hungary, my home country. That was because people around me did not know about them. So I felt isolated only in that part. This is what made me search for a job related to Hungarian culture or language in this Kansai region, when I decided to change my career last summer. I never found any, actually. Then I happened to visit the Kokopelli121 office for some other reason. I was surprised that they asked me to be a Hungarian language teacher while we were talking. What a serendipity! I accepted the offer on the spot. That’s why I am here now.
So I have been teaching Hungarian to Kokopelli members. But we are preparing the language class open for anyone in public, which starts in November. (*1) The venue will be that ‘Kyoto International Community House’ in Keage. So please join us if you are interested in new cultures and languages for you, or the human being on the whole. We will be waiting for you.
(Applause)

(*1) The start of the Hungarian Language Sessions has been postponed to 2021, due to the circumstances of the COVID-19 spread. The PDF flyer linked below is about the related events on Mar. 20, Apr. 3 and the language sessions starting on Apr. 17, 2021. (Japanese only)

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　Homepage: https://kokopellimagyar.wixsite.com/-site

P.E.: You see I am talking about Hungarian, but not saying a word in Hungarian? So my students from Kokopelli, who have just started will entertain you with the language. There will be two short stories. In the first one, they will try and buy a newspaper in Hungary. Check out if they successfully get what they want.
(Applause) (A couple of students appear on the stage)

Hoshiko: Jó napot!
Yagi: Jó napot!
Hoshiko: Kérek egy hirlapot. (Presenting money)
Yagi: Hirapot? Elfogyott. (Throwing her the newspaper)
Hoshiko: Elfogyott? Jó napot! (Getting upset, turned around and went off)
Yagi: Jó napot!
(Another couple of students show up)

Ogawa: Jó napot!
Itoh: Jó napot!
Ogawa: Kérek egy hirlapot.
Itoh: Hirapot? Elfogyott. (Hiding the newspaper)
Ogawa: (Laugh) Elfogyott? Jó napot! (The expression says ‘You’ve got the paper!’ )
Itoh: Jó napot!
(Applause)

P.E.: Seems like it didn’t work well, unfortunately.
(Laugh)

P.E.: Now, we want you to take a look at the next one. This is from ‘One Minute Stories’: a collection of short stories by a well-known Hungarian author, Örkény István. It appears like a poem but in fact, is a story. OK, enjoy ‘Változatok (Variation)’ by Örkény István.

P.E. and her students: ( Looking at the screen of the sentences)

A fűre lépni tilos
tilos a fűre lépni
lépni tilos lépni
lépni lépni lépni
lépni tilos tilos
tilos tilos tilos
(Turning to the audience) Tilos.

Eszter: Thank you so much.
(Applause)

MC: Thank you very much!
(Applause)

Talks by Kubota Tetsu and Professor Tateiwa Shinya

After three documentary films;
‘ Koutani Masaaki’,
‘ What counts is simply being here ~from Koutani’s Journal ‘’ALS-ish days’’ ’,
( original Japanese title ‘ Tadairudakede, imiwaaru ~Koukai-Nikki ‘’ALS-na-hibi’’ ‘)
‘ Words Through Eyes’
( original Japanese title ‘ Me no Kotoba’’ ‘)

MC: Thank you all for watching. Now we’d like to welcome Kubota Tetsu-san on stage, who created these three films. He’s gonna give us some talk about his work.
(Applause)

Kubota: Well, Osami-san told me that two of us would have a chat on the stage. So I didn’t expect this, that I have to be here by myself, in the centre of the stage. (laugh) I am sorry that I have not been prepared at all.
To tell you the truth, that last film we just watched, featuring Nakamizu-san, was my first shooting work right after I got my first camera, which was quite small. On top of that, I don’t know so much about how to edit the movies. So I am embarrassed that you people watched my works after you watched that ‘Entoko’ film. The sound must have been hard to catch in some parts, and many things were messy, sorry about those.

OK, well, I wanna tell you why I thought up of this idea of documenting these people with ALS. 　It started in 1995, the year of the Great Hanshin-Awaji Earthquake. Back then, I was diagnosed with an illness called Guillain-Barre Syndrome, which kept me in bed for almost a year. I really could not move. I was in fact kept in an ICU for about 6 months. I barely managed to wiggle my toes slightly and the doctor said ‘You’ve got some tough feet.’, it was that heavy. So anyway I was long in hospital in that state, during which-, I had this intense experience that hit me in the head.
That went like this-, I was placed adjacent to this old guy, named Mori-san when I was moved to a shared ward from the ICU. He was completely blind but very talkative. So he kept talking to me, while I had not been able to speak a bit, with a ventilator into my body after this tracheotomy throat operation. Then he could not understand why I did not respond to him at all, and seemed very perplexed, asking ‘What’s wrong with you?’. From his perspective, it was like I was ignoring him. He sounded even sad. When I look back on this situation now, I would’ve told the hospital not to place these two guys side by side on the first place. (laugh) Anyway Mori-san and I had no mutual paths to communicate with each other.
That was when I invented this tool, a Japanese alphabet chart with braille on it. It worked like this, I hold Mori-san’s hand, leading it to the letters for the words I wanted to say. Well, he was quite skilled in braille, but still it was hard as I tended to hasten his finger without knowing it. He sometimes got frustrated saying ‘Give me a moment, ‘ or ‘ I don’t get it, ‘. So, that was my own hands-on experience of endeavours to communicate in a unique environment. That was back in 1995, the year of the Great Earthquake.
After that, I joined the Center for the Study of Communication-Design in Osaka University, which Washida-san, who is present here today started up in 2005. The purpose of the foundation was to be a bowl of all sorts of people from specialists to students in a vast array of fields, to talk and think about communication. Then I met Nishkawa Masaru-san from the nursing-care field at that centre in the same year-, who was quoted several times in today’s talks. I also met Shiga-san there, who had been seeking the potentialities of the body for human-communications. She lead my way to Koutani-san later on.
All these three works you just watched are, kind of, some fragments of the results of our research into different sites of communication, which I recorded by means of a movie media. Well, this is a brief history of how these films were made.
What captivated me today was, the words of those people in my films amazingly correspond to those in ‘Entoko’ movie. I remember clearly that one helper beside Koutani-san said ‘He leads me to the right path’, and a person in ‘Entoko’ said almost the same thing. There is a ‘ reciprocally-interlaced community’ made of the ones who help and the ones who are helped, in every site and situation. Watching both ‘Entoko’ and the films I had shot made me convinced of it. It is also the case when I review my own experiences-, when I learned something from somebody, I also inevitably had that person realize something. Like, Mori-san’s existence caused me to create that braille alphabet chart. Well, to be honest, I was the one who begged him to make one, saying ‘Please, please!’ (laugh) So anyway, I now am happy to re-discover this mutuality in the human relations, through today’s event. Well, that’s all from me. Thank you very much.
(Applause)

MC: Thank you, Kubota tetsu-san.
OK, now we have our final speaker of the day, Professor Tateiwa Shinya, a researcher in sociology, who is also a friend of Osami-san from Kokopelli121 who set up this show. He will give us today’s closing speech. Are you there, professor?

Tateiwa: Hello, everyone. I am Tateiwa. (Pointing at the hat he is wearing) You see this hat, I just bought it last month. I usually do not wear a hat, but I now simply feel happy in it, so I came with it today. No big deal, that’s all.
So..., she said I am supposed to give closing remarks..., but sorry I don’t think I can. I had been handed a flyer for this show, but I even didn’t remember that it was today. And I was asked to deliver a talk just this morning. Osami-san mailed me and I thought I would play truant (hooky) on it. But Kyoto is so small and cosy that I briefly took a jog along the river and then ended up getting here. That’s why I am standing here now. So, quite honestly, I have nothing prepared to say.
But I was moved by some old footage of Koutani-san. I was like ‘Wow, he’s so young in there!’ Is it from 2006? So that means it’s back from 14 years ago. Then the next film is just from several years ago -.

　Well, what I do is writing. So I value written words. That may be the reason I’m doing what I do. But watching this kind of movies always makes me realize that we need both visuals and language. Well, when we come to think of it, it perfectly makes sense, of course. So actually I myself have started to collect movies, photos or drawings regarding my research.
But again, what I fundamentally do is writing. We have established this research centre which we named ‘the Institute of Arts Vivendi (the Institute of Art of Living)’, in which we keep documenting the things almost all in written form, which is sort of boring and prosaic methods, but we find it truly necessary.
I’m gonna tell you an example for why it is important. Let’s go back to 2006, the year that film was shot. I moved over here in Kyoto in 2002. That was just about the time koutani-san was diagnosed. He and people around him had gone through quite tough things since then. Then, they started to negotiate with Kyoto city around that year of 2006, and then 2007, but didn’t get it through at first. When we all tried and teamed up as a big group and went up to the city council in January, 2008, to make a plea for a new and enhanced welfare system, we finally managed to acquire barely what we had wanted. Those were the steps we climbed along before these present regulations under which the city pays the helpers for disabled people. This current environment in which you help every aspect of the daily lives of those people with disabilities and then receive an income by it to make a living -, while you keep pursuing your own life’s interest. So it means, the social systems here in Kyoto changed so rapidly in just several years. These are the things we keep in record in written form, at this institute.
Language is indispensable in this sense. This is what I mean by saying that we need both visual resources and language.
By the way, as I said, I was impressed by the scenery of Koutani-san in 2006, in this film today. I felt like ‘Oh, this was what he was like back then, ‘ I mean he was around 48, so young. I am now way older than him in the film, by 12yrs. Another film is back from 2016, right? The camera reveals his skinny, kind of gaunt body straight in front, or how his arms were moved, or how many facial expressions he still had, or how much he was able to move by himself back then.... I’ve been seeing Koutani-san from time to time, but I probably feel a bit awkward to observe his body in person, so I haven’t recognised those things about him. By watching those two films, I found out how he had changed in that decade. It was a fascinating discovery to me. Well, I go anywhere saying ‘fascinating’ just about anything, but it was really fascinating today.
OK, now I want to talk to you about something which is in that boring-method range. (Showing the screen of a tablet) You see this screen? -Probably you cannot, from there. But anyway this is our website titled ‘ALS Kyoto’, in which we keep documenting how people with ALS have been doing here in Kyoto. Well, documenting it in written form again, mainly. It includes the cases of Masuda-san, or Koutani-san who are here among the audience today. It includes those of some other people. How have they been leading their life? Or, how have the people around them been dealing with them? We interview these people and record it.
For example, I interviewed Osami-san, the one who organized this funny event today. I think we talked last year? Or maybe the year before. The written record of the entire interview is on this site.
Another example. Well, Koutani-san have some old friends whom he got to know in his part-time jobs, or whose body-conditions he looked after as a physical therapist-. Many of them do something in performing art field. They have been deeply involved in Koutani-san’s life. Among them is this professional dancer named Yurabe-san. We had a talk with him for many background stories, and transcribed the whole 2-hour conversation into the written record. This is a kind of work with extraordinary exertion, really. But I believe this is such an important thing to do. You can convey meaningful messages and keep historical records through the combination of visuals like those of today’s event, and these written words. So I ask you to keep supporting us doing this work in the writing field, too. -Well, thank you.
OK, another thing. I would like to do one event’s publicity here. Well, the only thing I do on this kind of occasion is an advertisement.
One reason I thought that I might want to skip this event was, now I am being quite busy every day preparing for another event which will be held next Saturday, a week from now. We will have the conference of ‘Japan Society for Disability Studies’. We will do it online, with many corresponding reports on our website and Q&A sessions by email, due to this covid-19 situation.
Let me explain what this ‘Japan Society for Disability Studies’ is. It mainly is composed of those people with muscular dystrophy. I guess you’ve ever heard the name of the disease. It has many things in common with ALS, but is very different from another perspective. Many of the muscular-dystrophy patients start to develop the symptoms in much earlier stage than those of ALS. Some of them are diagnosed around the time they start to go to school. They often could not make it up to the age of 20 in the olden days, but nowadays, they survive up to 40 or 50.
When you see people with ALS, they find out about their disease at around the age of 50 or 60, while working for any kind of company or firm, shocked by the fact, and then start to seek each path. But the people with muscular dystrophy were hospitalized in these national sanatoriums which had been originally opened to isolate tubercular patients, when they were very young before going to school. Some of them spent 30 or 40 years there as inpatients until they passed away. But things have changed now, the lifespan becoming much longer and so on. Then nobody wants to live in a sanatorium for more than 30 or 40 years. So they are now trying to seek a life outside of the facility, in the normal community, just like Koutani-san. Many ideas and trials for it are springing up now.
And, I am now involved in their activity a bit. The thing actually started here in Kyoto, then in some natural course of events, rippled over to Nishinomiya and some other places in Hyogo then through Kansai area, now spreading all across Japan. I find this movement quite intriguing. We’re trying to make this next-Saturday event an exciting one, too. It is practically free of charge as we do not have the solid online system to charge the entrance-fee. We probably will do it via Zoom. Well, how do you search for it-, maybe search my name ‘Tateiwa Shinya’ or ‘the Institute of Arts Vivendi (the Institute of Art of Living)’ -or ‘Japan Society for Disability Studies’. Or you can simply mail me for the invitation. Then you will join us a week from now, listening and finding out how those people with muscular dystrophy, which is similar to ALS in a sense are trying to change their life. I will be a host of the day, asking for the stories from researchers, journalists, caregivers or helpers, many sorts of people who’ve been seeking a new way or trying to support them. So please join us online.
Well, I’m nearly finished. You see, I told you that my talk would not be a closing speech at all but simply an advertisement. I sometimes do this in the events Osami-san throws.
Osami-san, ...such a quirky kind of person beyond comprehension. He hosted another strange get-together at a club, named ‘UrBANGUILD’, was it? - on the subjects of Korean language, ALS and something else I didn’t understand (laugh), around the end of February. I attended it. It was before the COVID-19 situation got serious. Now we have been in the society which prohibits us from having such shows- for about 6 months.

But I think we have many stimulating things happening here in Kyoto. Some precious, exciting things- for this decade, or maybe longer. All ranges of people, besides those who are professionals and very keen in social-welfare or medical fields, like artists, writers gather and melt to try to build inclusive communities. That group of ‘Japan Society for Disability Studies’ which I introduced to you just now, of people with muscular dystrophy, is one of those movements.
So, if you look around, you’ll find lots of fascinating things occurring just in your neighbourhood. And if you simply jump in, you can become a part of it. This event of today might be such a golden opportunity for you. Or if you are already taking part in those activities, then you can review the whole picture around you in this kind of occasion. Or, this gathering also works as a reunion for those who had got to know through those activities but have not seen each other for long. I believe today’s event has these meanings.
Well, excuse me again, half of my talk was just an advertisement. In fact, I just arrived here so I do not know the flow of this event. I will leave the real closing remark to Osami-san or someone. Thank you very much.
(Applause)

MC: Thank you, Tateiwa-sensei.

（Osami, representative of NPO Kokopelli121 comes up to the stage）

Osami: I thank you all for coming, I thank you who translated everything into sign language, I thank all the staff, and the two MCs. Thank you all very much.

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Posters of The Independent Film Show "Songs of Entoko"
『えんとこの歌』自主上映会チラシ（表面）
『えんとこの歌』自主上映会チラシ（裏面）