第一回:”震災と難病” — Part 1: "The earthquake and Intractable Disease"

March 09, 2013  •  1 Comment

 

明美さんのPC、これ、読んでくれてますか?笑顔がすてきな鈴木明美さん
震災関連のシンポジウムで、宮城県難病連絡協議会の小関理さんに出会いました。被災地に行くと、私は崩壊した建物の写真を主に撮っていましたが、小関さんから被災地の難病を患った方たちのお話を聞き、今回の旅では人の写真も撮ろうと思いました。そして小関さんから紹介していただいた方が、鈴木明美さんです。(余談ですが、鈴木さんのご実家は、私の母親の実家から石ノ森萬画館をはさんだ対岸にあり、近所であることがわかりました)

What if M9 earthquake happens in your country? Are you ready for that? People who have experienced the disaster are the only ones who can tell you how to educate the society and get ready before it comes. This story is about Mrs. Suzuki who suffers from MS and still lives in the badly damages area. (Sorry for my English!)

At a symposium of the 311 earthquake related matters, I met Mr. Osamu Koseki who is a member of the group of intractable diseases of Miyagi prefecture. After the earthquake I have been mainly taking photos of collapsed buildings, however, when I met Mr. Koseki and heard about the people with intractable diseases in the Tohoku area, where the tsunami hit, I decided to take photos of the people, too. Mr. Koseki introduced me to Mrs. Akemi Suzuki. (After we met we found out Mrs. Suzuki and my uncle were neighbors.)

鈴木さんはMS(多発性硬化症)を患っています。目が不自由で、右半身が思うように動かせません。MSの特徴は、疲れや体温が上がると体調が著しく悪くなり、ひどい日は寝込んで動けないほどになります。鈴木さんの障害は重度の1級ですが、左の写真からもわかるように、体調のいい日は、見た目からは障害があることが全くわかりません。鈴木さんは目が見えなくなってから人と対話するための訓練を受けたそうですが、お話をするときもこちらの目をしっかりと見てお話をしてくださるので、こちらは鈴木さんが目が不自由なことを忘れてしまうくらいです。

Mrs. Suzuki has Multiple Sclerosis (MS). She is almost blind and has trouble moving right side of her body. As a symptom of MS, when she gets tired or her body temperature goes up, she becomes tremendously ill and when the condition is bad, she cannot even move. Mrs. Suzuki has disability rate of 1 (meaning her disability rate is the highest; most severe), however, as you can see from the photo of the left, when her condition is good, it is hard to tell she has the heavy disease. After she became almost blind, she took lessons to talk to people in person and is able to look at the person’s eyes when talking, which makes the person forget that she is blind. 

鈴木さんはあの日、1人で石巻の家にいました。地震の後、家の外に出て戸惑っていると鈴木さんの体が不自由なことを知っている近所の方が探しにきてくれて一緒に逃げてくれたそうです。もし、近所の方が探しに来てくれていなかったら、鈴木さんはおそらく逃げ場を失うことになってたのかもしれません。震災の日には鈴木さんのように幸い助かった障害者の方ばかりではありませんでした。命は助かった障害者の方達も、震災後の生活の中で大変つらい思いをされてきた方がたくさんいます。

朝日新聞の”プロメテウスの罠”という震災関連の記事がこのことについて連載しています。是非読んでみてください。

(http://digital.asahi.com/articles/list/prometheus.html)

On the day of the earthquake, 2 years ago, she was at home in Ishinomaki city by herself. After the massive earthquake, she went out and was not sure what to do by herself. She heard her neighbor calling her and had a huge relief. They ran away from the water together after soaked in water up to her chest. If the neighbor, who knew that she was blind, did not come to help her, she would probably not be here now. 

写真左に写っている手すりが公費で取りつけてもらったものです
鈴木さんの障害は見た目からはわかりづらいこともあり、仮設住宅に入る際も障害を考慮してもらえませんでした。鈴木さんご夫妻は障害者用の仮設住宅に応募しましたが、車いすを普段は使わないという理由で、障害者用住宅へは入居できませんでした。通常の仮設住宅へ引っ越してみると段差が多く、手すりもなく、体調の悪い日には四つん這いになって歩かないとならない状況でした。障害者の仮設住宅改造のための資金が国から出ているという話を聞き、震災から7ヶ月を過ぎた頃、手すりをつけてもらえないかと市に交渉したところ、実費でつけてくれと言われました。結局交渉の末、翌年1月につけてもらえることになりましたが、石巻市では公費で手すりをつけてもらったのは鈴木さん宅がはじめてだったそうで、市の方たちが手すりの写真まで撮りにきました。他の障害者の方たちは市に取り合ってもらえないため、ボランティアの方達につけてもらったり、実費でつけたりしていました。障害者用住宅がどういうものなのか、疑問に思った鈴木さんは、知り合いの住宅を訪ねると、車いす用のスロープが住宅の前にあるだけで、入り口が車いすの幅よりも狭く、家の中に入るには車いすを降りないと入れず、住宅の中の造りは通常の住宅と同じでした。障害があり、助けが必要な人たちがたくさんいるから助けてほしい、と鈴木さんは市に訴えましたが、聞き入れてもらえず、状況はなかなか改善されませんでした。そんなとき、市から、保健士さんが派遣されることになり、鈴木さんは助けが必要な障害者の方たちや壊れた家に住んでいる高齢者の方たちのことを思ってうれしかったそうです。

Because sometimes it is not easy to tell how ill she is, she had difficulties getting into a barrier-free temporary home.  She applied for the barrier-free temporary home for disabled people, however, because she does not always need wheel chair depending on her condition, the city assigned a regular temporary home for Mr. and Mrs. Suzuki. The regular temporary home had a lot of steps and no grab bars. When her condition is bad, she had to walk on all fours to move around in the house. After about 7 months since the earthquake, she heard that the government is funding for fixing houses for people with disabilities and went to the city hall to ask to add some grab bars in her house. The office clerk told her that she had to pay for it. After talking with them again and again, in January on the next year, they agreed to install the grab bars. Later she found out her home was the first one where the city installed the grab bars and the city even came to take photos of it as a record. Mrs. Suzuki’s friends with disabilities had their bars installed by volunteers or by themselves because the city rejected to help. One day Mrs. Suzuki wondered how the barrier-free temporary home is, and went to see it at her friend’s. What she saw there was not something she expected. There was a slope so the wheelchairs can go up, however, the door was narrower than the width of regular wheelchairs and the chair cannot enter the house unless the person gets up and fold the chair. Mrs. Suzuki went to the city hall again to talk with them because she knew there were lots of people with disabilities who need help. After a few months, they told her they would send some nurses to people who need special care. She was glad to hear the news thinking about the people who have been asking for special help and elderly people who have been living in collapsed homes. 

 

派遣されてきた保健士さんから、「私はこの地域担当ですけどここに要支援者の鈴木さんが住んでいらっしゃるのを知りませんでした」、と言われ、鈴木さんは驚きました。鈴木さんは障害者手帳も持っているし、定期的に役所で手続き等も行っているのでてっきり自分の名前もその名簿に載っているものだと思っていました。詳しく聞くと、障害者の中でも神経難病の患者さんは、市ではなく県が管轄になって名簿を作っているらしく、市と県のつながりが成されていなかったそうです。”プロメテウスの罠”に南相馬市での例が詳しく書いてありますが、震災後、個人情報の保護という理由で要支援者の名簿が市から福祉施設に開示されなかったために障害者の方達が逃げ遅れたり、災害が起きたことを知らずに家に取り残されたり、という問題が起きました。鈴木さんの場合は、個人情報保護のためだけではなく行政のつながりが出来ていないために把握されていなかったことになります。特に石巻市は被害がひどかったせいもあり、震災後はしばらく自治体としての体をなしていなかったといいます。鈴木さんは、行政は障害者のために障害者の視点で障害者について考え直してほしいと訴えます。

When the nurse came to her home and said “I am in charge of patients around this area but I didn’t know you, with such heavy disease, live here”, Mrs. Suzuki was shocked. She is registered as MS patient with disability level 1 (most severe) to the government and totally thought the city knew about her, too. After talking to the nurse she found out that patients with intractable disease are organized by the prefecture, not city, and the prefecture was not sharing the information with the city. During the 311 disaster, a lot of people with disability lost their lives because, due to the privacy law, each city did not share the list of the patients with non-government volunteering groups, who were eager to save them. Although the privacy law should be kept within the government except for emergencies, knowing the troubles caused during the 311 disaster, she thought the situation had become better but she was wrong. Although Ishinomaki city, where she lives, had the worst damage because of the tsunami, and the city was not working correctly right after the tsunami, the situation should have gotten better if the government learned from the disaster. Mrs. Suzuki wishes the government reconsiders about the situations of disabled people in case of emergency from the viewpoint of the people with disability. 

鈴木さんは、復興のニュースを聞く度に複雑な気持ちになるといいます。「テレビでお店やレストラン等、震災後に再開したところが取り上げられるけど、震災前の石巻の姿をよく知っている地元の人たちは、再開できたお店や会社はほんの一握りで、ニュースには取り上げられていない再開できなかったところの方が多いことを知っています。復興ばかりに照明がが当たってしまうと取り残された気分になる。」鈴木さんご夫妻も、鈴木さんのご両親も、妹さんご夫妻も、この先、仮設住宅からいつ出ることができるのか目処は立っていません。

“I don’t know how I am supposed to feel” Mrs. Suzuki says. “When I see and hear news about the recovery process of my home town, for people, who do not know about the town since before the earthquake, it may seem like a lot of businesses are reopening and recovered from the disaster. However, the stores and companies that reopened are only small part of the huge damage caused in my town. I know there are much more people who has not been able to restart their business than those who were able to restart, because I know the town since before the tsunami. I feel I am left behind when news spot-light only the recovering part of the town.” Mr. and Mrs. Suzuki, her parents and her sister’s family still have not figured out when and where to move from their temporary housing. 

梅と菜の花:鈴木さんが毎週水曜日に500円分のお花を買ってきてご自身で生けるそうです

周囲のお店や会社が少しずつ再開していく中で、再就職をする人たちが増えて行きました。鈴木さんのご主人も、震災前にしていた仕事とは全く違う内容の仕事ではありますが、再就職しました。障害者の就職について私が疑問に思い、聞いてみると、やはり鈴木さんの顔は曇りました。被災地に住む人々が就職先を探すに当たって、地元から周辺の会社では被災者枠が設けられました。しかし、その被災者枠の中には障害者枠はなかったのです。震災が起きる前までは、障害が比較的軽い人たちの中には働いていた人たちもたくさんいました。障害が軽いために障害者年金の額は少なく、それだけでは暮らして行けないから働きたい、そういう方達が、震災以降、再就職できないでいることはあまり知られていません。

As businesses in the town gradually reopens, people in the area started to find jobs. Mr. Suzuki also found a job although it is totally different type of job from what he used to have before the tsunami. I wondered about job hunting for people with disability and asked. “When people in this area started to look for jobs, companies around this area decided to have some openings specified for victims of the disaster. However, there was no openings specified for disabled victims. If there are two candidates with and without disability, companies would naturally hire the people without disabilities” she said. Before the 311, a lot of people with relatively light disability had jobs. “Because their disability is light, they do not receive much disability pension and they need to work.” This issue of people with disability is also outcasted under the massive troubles caused by the natural disaster. 

「40代でMSを発症したけど、私は自分を障害者だとは思っていなかった。障害は個性だ、誰だって病気になることもある、くらいに思っていたんです。」しかし、震災直後、救いの手が障害者たちに届いたのは、多くの場合、健常者たちが逃げた後だった。救いの手が届くのが遅すぎて命を落とした障害者たちもいる。震災後も、障害があるせいで就職も後回しにされている。「震災後の経験で、私たちは普通じゃないんだ、障害者なんだ、って認識させられました。」鈴木さんとお話していた中で一番考えさせられた言葉でした。

“When I found out that I have MS in my 40s, I actually did not feel that I was disabled.  I was thinking what I had was just my originality but not disease.” However, right after the 311, she experienced and witnessed that people with disability were left behind until everybody else was saved. A lot of people with disability lost their lives because nobody came to save them although they could have been saved if the government was more organized for disabled people. Even after two years, a lot of her friends are still having hard time finding jobs because problems they encountered have never been even noticed by public. “All the experiences I had during and after the tsunami made me realized I am a disabled person.” This words from Mrs. Suzuki made me think deeper about the natural disaster. 

もちろん、鈴木さんが、障害は個性だ、と言えるようになるまでには、色々な葛藤がありました。鈴木さんは美容師をしていました。結婚してからも美容師になる夢を捨てきれず、家庭を持ちながら美容学校に通い、やっと掴んだ美容師の仕事でした。MSを発症し、ハサミを握れなくなり、絶望しました。自殺も考えました。鬱病にもなりかけました。それでも立ち直り、鈴木さんは自分が病気になったことに意味を感じるようになり、発症から7年を過ごしました。そして、震災が起こりました。生まれ育った場所が壊滅し、幼い頃からの友人たちを失い、自宅や持ち物も失いました。それでも死ななかった、自分は生かされているんだ、この経験を発信しなければ、と思った、といいます。

In fact, it was not easy for Mrs. Suzuki to became able to say her MS is her originality. She was a hair stylist. She could not give up on her dream to be a hair stylist even after she got married and had kids. She went to a school to be a hair stylist while taking care of her family and finally gained her dream job. One day, she could not hold her scissors. She found out about her disease and became completely depressed. She even tried to commit suicide. However, she still recovered from the depression and started to think that there must be a reason why she became sick. For the seven years after the emergence of MS, she strived to stay positive and psychologically overcome the sickness. Then, the earthquake happened. She lost her home, friends from childhood and the home town. “I still survived. I did not die. I am alive. I must send my story off to as many people as I can.”

可愛らしい折り紙で作った爪楊枝の入れ物をいただきました


今では病気や震災のおかげで物事を違う角度から見つめられるようになったので、これでよかったのかな、そう思うしかないよね、と。そんな鈴木さんでも夕暮れから夜の間はやはり心細くなると言います。

“Now I am able to see things differently because of my sickness and the earthquake. I think my life has been supposed to be this way. Well, I have to at least let myself accept this fact like this…” Even Mrs. Suzuki, who overcome several hardships in her life, feels lonely when the sun goes down thinking about her future, past, people who lost their lives and her fellow patients.

毎週水曜日には、仮設住宅にやってくる移動販売の花屋さんで500円分のお花を買って生けるそうです。2月に私が訪れたときは、菜の花と桃の花がとてもきれいでした。指の体操のために作ったという可愛らしい折り紙の爪楊枝入れをいただきました。お話を聞かせていただく前は、目が澄んでいて笑顔がすてきな女性だな、と思っていたのですが、お話をしてくださっている鈴木さんを見ていると、その明るさの中に力強さが見え隠れして、鈴木さんの使命のようなものを私も感じました。

Every Wednesday is her favorite day. A moving florist comes to her temporary housing complex. She goes out with a 500 yen coin in her hand and picks her favorite flowers. When I visited her, I saw rape blossoms and peach blossoms nicely arranged in a vase. When I was about to leave, she gave me some beautiful origami tooth-pick cases which she made as part of finger exercise. When I first saw her, I thought she is a nice lady with the lovely smile and clear eyes. When we finished talking, I saw a strong-minded will for her mission, which she assigned herself, in those beautiful clear eyes.  

いまだにこういった仮設住宅での生活を余儀なくさせられている方達がたくさんいます

企業メセナ GBFund 助成金

今回の東北への撮影の旅は企業メセナ:GBFund様から助成をしていただきました。仕事でもなく自費で旅をしていた私のようなカメラマンにとっては本当にありがたい限りです。ありがとうございます!!This project is supported by GBFund. 

 


Comments

PJ Pennewell(non-registered)
Aya, this is a fascinating and beautifully told story! And your photos give a great sense perspective. What a wonderful woman Mrs. Suzuki is. And what you're doing to document this area is wonderful. Congrats. Miss you :-)
No comments posted.
Loading...

Archive
January February March (2) April (2) May June (1) July August September October November December
January February March April May June July August September October November December
January February March April May June July August September October November December
January February March April May June July August September October November December
January February March April May June July August September October November December