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

March 09, 2013  •  1 Comment

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.)


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. 


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. 




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. 


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. 


“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. 


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. 


“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. 


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.”


“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.


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.


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. 



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 :-)
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