Visits to the Leprosy Colonies –from Benjamin, Midori, and Paul / ハンセン病村への訪問 –ベンジャミン、五嶋みどり、パウルより

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Sites Visited on 26 December
Bishnupur Leprosy Colony, West Bengal
Peardoba Leprosy Colony, West Bengal
(with an introduction to both villages by NPO Wappiness: http://en.wappiness.org/)

December 25th and 26th – from Benjamin

Our perception of time has slowly switched and adjusted to the local one. We barely raise our eyebrows when we learn that our plane has a two-hour delay, no one starts having breakfast until ten minutes before our scheduled departure, and so by the time we arrive at a leprosy colony, I simply have lost all track of time. (We were guided in all three colonies by Eriko (from a Japanese NPO Wappiness, and she lives in one of them.) It was explained to us that this disease, as a medical condition, is actually far from being as terrible as people imagine and have made it to sound: Eriko, stressed that leprosy is not dangerous for adults, hardly contagious and completely curable with treatment.

At the colony, we share lunch together – which was actually almost dinner time because of our late arrival – then the 4 musicians spread in the three streets of the settlement. Each one of us played short solo pieces in different corners of the village to invite people to listen to our concert at the Community Center, in the center of the town. As I am playing amidst the houses made out of mud. infants, cooking mothers and the elderly whose hands have been deformed by the disease and making it look as if the fingers are missing stepped out of their homes, first curious, and soon smiling, balancing their head to music…

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at Peardoba Colony/Peardoba村にて

December 26 – from Midori

We have been in West Bengal now for two days. Although our flight from Delhi to Kolkata was just casually late, the amazing thing is that nobody gets upset. Whether the time decides what to do when, or the person decides what to do when, well, that’s just a matter of perspective.

We visited three leprosy colonies in the last two days. Leprosy, or Hansen’s Disease, is actually mostly a skin and nerve disorder caused by a bacteria Mycobacterium leprae. How many times was I asked if I got a vaccination before visiting? What an ignorant question.

We imagined that in the Villages, we would find persons who are mostly patients with visible aftermaths of disabilities and deformities caused by the bacteria, and therefore expected a kind of an open rural hospital/institution setting. On the contrary, while all of them were in completely destitute conditions: below poverty-line, severely-challenged living standards, we were welcomed by happy, energetic, smiling, and warm people, and the children in particular, receiving us with extraordinary openness.

From what we learned, there are some 800 leprosy colonies in India, of which we were able to visit three. The issue we face with leprosy colonies is a social one and not of a medical illness, and that of severe discrimination that afflicts multiple generations. At this point in time, in 2017, even though there are new cases of Hansen’s Disease reported every year, it is a completely curable disease only with a regimen of medication, and the likelihood of it being contagious to others is nearly non-existent. While its late symptoms may be frightening for some on-lookers, it is definitely not fatal. It is nonetheless somehow a disease that arouses extreme fear in society, that subjugates those who develop the symptoms (even when one has the bacteria, it is unlikely that the symptoms would develop, and in fact, if the symptoms were to develop to an extent visible on the outside of the body, that would mean that the disease would have been contracted as long as 10 years prior) to atrocious and unforgivable discrimination.

Historically and more recently, various governments and societies have handled the victims of Hansen’s Disease differently, but most with inexcusable, inhumane, and often barbaric methods and approaches, and some still continue their illogical ways, perpetuating the problem of social stigma. From what we experienced in the colonies we visited, fairly typical of those in West Bengal and in the rest of the region, we learned that the majority of those living in the villages actually never were patients and are mostly instead the second and third-generation families of a few former patients. Even then, the stigmata haunt them, often preventing rightful access to the most basic of the needs such as education, healthcare, the right to earn a living in dignified ways, and participation in society-at-large. This disables a break from a cycle of poverty because of marginalization. And while the actual number of new cases and of existing patients are very small by world-standards, it becomes a serious issue because of the wide-ranging problems and injustice stemming from it, extending it to persons around the actually those diagnosed with it.

How does the music feel when playing, especially when we are confronted head-on by the injustices of the society assaulting these villagers? There is no question that music can transport all of us. Music brings all of us a beautiful feeling. As we sense the children’s concentrated gaze, hear the birds chirping over our heads and cows and calves mooing along, while puppies are playing a tug-of-war, the music and the hearts also flow out and surround us. It was one of the most idyllic encounters with music for me.

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“I am the definition of cuteness”/「僕ってかわいいでしょ」

Day 7 and 8: video digest by Paul / 7日目・8日目の動画(ハンセン病村)- パウルより

2017/12/26の訪問先
Bishnupur ハンセン病村西ベンガル州
Peardoba ハンセン病村西ベンガル州
二か所ともNPO法人わぴねす https://wappiness.org/ よりご紹介いただきました。)

2017/12/25, 26 – ベンジャミンより

私たちの時間の感覚も、だんだんインド風になってきました。飛行機が2時間遅れても別に驚かなくなりましたし、ホテルの出発予定時刻の10分前までに朝食をとるメンバーは誰もいません。ハンセン病村を訪問する頃にはすっかり時間の感覚がなくなってしまったようです。(日本のNPO法人「わぴねす」の恵理子さんが3か所の村に案内してくださいました。彼女は村の一つに住んで活動をしています。)ハンセン病は、人々の間で言われているような恐ろしい病気ではなく、大人になってからの感染はほとんどないですし、発病しても治療によって完治するのだ、と彼女は強調しました。

私たち一同は村で昼食(実際は私たちの到着が遅くなり、ほぼ夕食の時間帯)を取った後、居住区の中心にあるコミュニティー・センターで開くコンサートの宣伝も兼ねてまずは村内の3つの通りに分散し、各自が村のあちこちで短いソロ作品を演奏しました。私が土塀の家々から出てきて、初めは物珍しそうに、そしてすぐに笑顔をうかべて、音楽に合わせて頭でリズムを取る様子に、、、。

2017/12/26 – 五嶋みどりより

西ベンガル州に来て2日目を迎えました。昨日はデリーからコルカタへのフライトが遅れましたが、誰もイライラしていないのに感心しました。いつ何をするかを決めるのは時間か人か、まぁ考え方次第でしょうか。

その間、ハンセン病村の3カ所を訪問しました。ハンセン病は、らい菌が主に皮膚に感染する慢性細菌感染症です。それにしても、訪問前に「予防接種は受けたか?」という何人かの知人の質問を受けました。

村ではハンセン病による後遺症の身体障害や体の変形を持つ元患者に会うだろう、屋根のないバラックのような施設か病院らしき所を訪問することになるのだろう、と想像していました。ところが、実際は想像の貧困ラインを下回る厳しい生活水準であるのに、そこに暮らす人々はエネルギッシュで、特に子どもたちは温かい笑顔で私たちを歓迎してくれました。

インドには約800ものハンセン病居住地域があるということですが、私たちが訪問できたのはたった3カ所でした。ハンセン病村が直面している問題は病気そのものではなく、何世代にもわたって苦しめられてきた深刻な社会的差別なのです。2017年現在、ハンセン病の新たな症例が毎年報告されていますが、計画的に薬を投与されれば完治可能な病気であり、他人に伝染することはほとんどありません。症状を目にした人々は恐れるかもしれませんが、致命的な病では絶対にないのです。しかしなぜかこの病気は世間では極度に恐れられ、発症した人々は残虐で容赦ない差別にさらされています。症状が現れる可能性はまずありませんし、実際に症状が身体に現れた場合でも感染したのは10年も前かもしれないのです。

様々な政府機関や地域社会がずっと以前から最近に至るまで、ハンセン病の犠牲者に対して、許し難く残忍な仕打ちを行ってきました。未だに一部で、理不尽な方法で社会的に貶め続けているところもあります。 私たちは村を訪れたことにより、西ベンガル州や他の地域でも村に住んでいる人々のうち大多数は患者ではなく、ほとんどが数少ない元患者の2世や3世にあたる家族だということを知りました。それでも、病気に対する社会の非難や偏見のため、彼らは社会から疎外されて貧困の悪循環を断ち切ることができないのです。また、世界的な基準に基づいた実際の患者数や発症数は非常に少ないのに、差別や先入観が患者本人だけでなくその周囲の人々にも向けられることで実態以上に深刻な問題となっています。

これらの村に強要される社会の不当な仕打ちを前にした私たちの演奏は、どのように感じられたでしょうか?間違いなく、私たち全ての者の心に響いたと思います。音楽は美しい感情をもたらしてくれます。子どもたちの真剣なまなざしを感じ、頭上では鳥たちがさえずり、母牛と子牛がムーと鳴き、子犬が駆けっこする、音楽とその心もまた流れ出て、私たちを包み込んでくれました。それは私にとって最も理想的な音楽との出会いの一つとなりました。

 

 

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