Cooperation

Disaster-vulnerable groups and the reality they faced 2

One person can only push one wheelchair, you know. It would be great if we had 10 staff members for 10 wheelchair users, but we were short-handed.

That’s the sort of thing people understand once you tell them, but I also want people who aren’t involved in social work to be aware of these things that were happening.

Interactions between disabled trainees and surrounding people

What was good about living in the shelter? Anything that helped you?

Our trainees were really amazing. Abled people generally can’t help feeling like disabled people are coming from a position of weakness. Unfortunately this is the usual way of thinking.

Our trainees do have difficulties in life because of their illnesses, and so they do have a tendency to sort of hold back.

At that time, I think everyone felt like they had to do something in that situation.

There’s a retirement home called “Shioneso” in Arahama. Some residents of that home evacuated with us, and our trainees helped those people get up to the second floor.

I think there’s something to the idea that you become weak if you go in expecting to be protected. In a situation like a disaster, however, those who can move should do whatever they can do. There were a lot of elderly people in the shelter, so our trainees helped clean for them and carried meals to the 4th floor for elderly people who had trouble walking.

They also took initiative to start fires for everyone, to boil water for babies’ milk and things like that. Our trainees joined in these tasks of wood chopping and fire building, and I am very proud of them.

I think people, myself included, tend to think negatively when they’re feeling down emotionally.

In a situation like a disaster, I think it’s better to take some sort of action yourself so you can see things change a little.

Most of the people staying in the shelters during the day were elderly. The younger generations left the shelters for work in the mornings.

And so the elderly people who stayed at the shelter got bored during the day. Disabled welfare organizations like us have a lot of young trainees, and there are all kinds of things young people can do, not just physical labor.

For example, elderly people normally don’t use cell phones. But in a disaster situation like this, you have to use a cell phone to contact people. Our trainees did what they could by teaching elderly people how to use cell phones.

Normally it might not mean much, but this kind of support is really helpful in a disaster so people can contact their families to make sure they’re okay.

They would ask questions like, “How do you do this?” And “Where is my daughter’s contact information?” So our trainees taught them how to open their contact lists. When these elderly people got phone calls, they didn’t know what button to press to answer, and so we helped them together because we were nearby. This really seemed to be a big help to these elderly people.

These everyday things seem so simple, but I don’t think the volunteer helpers or school teachers at the evacuation center could have done this because they were so busy with general volunteering and management. We were able to help because we were there, spending every day in the same room with these elderly people.

Reopening and connecting with JDF

Around the time of the Golden Week holidays in May before we reopened, we learned about JDF (the Japan Disability Forum). These people wanted to help the disabled. We had them plough the fields with us when we first reopened in the prefab in Iriya in late May.

The JDF people came from all over the country, all the way from Hokkaido in the north and Okinawa in the south.

We set up a map of Japan and filled in the prefectures people had come from. We wanted to thank the people who’d come to support us, so we later sent them our newsletters that showed them how well Nozomi was doing.

Dedicated effort

When you saw the staff managing the shelter, did you feel like you had to do something?

Ogawa: Umm…

Kayoko: I don’t think they even had time to think about it. We (the staff) were responsible for some severely disabled people, so we had to protect them first. We didn’t know if our own families were okay, and we didn’t know what had happened to the families of our physically handicapped users or our users in wheelchairs, either. And so Ms. Ogawa and others who would jump into action with one or two words from us helped us out. The ones who took action right away listened to us attentively.

The situation was so urgent that it was like, they had to do it for everyone else. We also had severely handicapped people to think about, so I think their thought process was that they didn’t want to be any trouble. She (Ms. Ogawa) also had parents and siblings in the region, and I’m sure she was worried. But she never said anything about that, and just kept working hard without even making a face.

Life at the evacuation center

Members of our group were worried not to bother each other in one sense, and I believe many of them hold their feelings.

There were situations people looked irritated as we all had to endure very inconvenient life. When we don’t have anything to do, we tend to withdraw and feel irritated.

There was a new initiative at the evacuation center to use water from school’s swimming pool for the bath rooms as we didn’t have water to flush. We relayed water in buckets from the swimming pool to the bath rooms and kept it there for flushing. Relaying water became a routine of life at the center. Our trainees had opportunity moving and using their body in this routine. We volunteered to clean the floor space we were using at the school as well. We wanted to have some kind of assigned tasks to do.

Persons in charge of the evacuation center were very helpful and considerate. While basic rule was for all the evacuees to stay in a gym except for the ones who were certified as being in need of care, we were offered separate room just after one night in the gym. They spared a classroom for us. With about 40 adults lying on the floor, the room was packed and without enough space to walk around. Still, it was really a relief for us. We would have felt much more pressured if we had to be with other evacuees and had to watch our group not to bother others. It was very helpful and we appreciated it very much.

Lifestyle changes after the disaster

How has your life changed since the disaster?

Before the disaster, I lived a normal life with my family even though I couldn’t see or hear well, but after the disaster the biggest change was that I could no longer move around my home and my neighborhood by feel like I used to, even though I couldn’t see much.  Even after I left the shelter, for around a year I couldn’t get around because I was in a new environment.

After that I thought, I can’t go on like this, and searched the Internet for “visually impaired people and jobs.” At that time I could still see my phone screen. The first thing that came up was the Sendai Support Center for the Late Onset Visually Impaired. It was near the place I had lived in Sendai for four years as a student, so I decided to go check it out. They told me a lot of things, like that my current vision would raise the degree of blindness indicated in my disability identification booklet, and that I could apply for a cane.

After that I received cane training and computer career training, and even started going to braille training. After I started going to braille training, I got direct access to information on fellow visually impaired people.

The Miyagi Prefecture Visually Impaired Information Center gave me all kinds of information on visually impaired people, and I also heard from some visually impaired people directly. Being able to access this information was quite a big deal. It helped me develop a positive attitude and move forward a little at the time, thinking about what to do and my needs in each moment while also keeping the future in mind. That was really major.

I went to braille training for around half a year, but I’m hard of hearing while most visually impaired people can hear, so I sometimes can’t keep up with the speed of conversations and have trouble understanding when I’m with visually impaired people. At the time I wasn’t wearing a hearing aid and had more trouble hearing than I do now, so it was hard for me to get information. So I sometimes just pretended to understand based on the few words I did manage to catch.

Then a staff member at the Visually Impaired Information Center told me that there were other people in Miyagi who were both visually and hearing impaired, and that there was an organization called the “Miyagi Deaf-Blind Friendship Association” (hereafter “Friendship Association.”) That was the first time I realized that I’m deaf-blind. When I participated in a mixer, an interpreter specialized in assisting deaf-blind people accompanied me. They interpreted what people were saying orally, and that made me realize just how much I’d been unable to hear and just how much information I’d been missing until then. I was so grateful for the interpretation, and it made me feel so comfortable and much more cheerful.

I also experienced using a guide dog. I don’t actually use a guide dog now, but the experience connected me with all kinds of information. I also met other deaf-blind people and learned that there are all kinds of ways to communicate even if you can’t hear or see.

For example, some deaf-blind people are hard of hearing but can use a hearing aid to have close-up conversations in quiet places, whereas others can hear sounds but can’t make out words. Then I decided I wanted to communicate directly with deaf-blind people who could use finger spelling, so I learned to finger spell the alphabet. I learned to tell them “Good morning (showing actual finger spelling),” at around that speed. I’m also learning a little sign language, a few words at a time. I also learned a communication method called finger braille. I’m still practicing it. I’ve learned about all kinds of communication methods, and learned that there are other deaf-blind people like me. By participating in activities with them, I’m able to participate in society centering around those activities. Now I’m continuing those activities while thinking about all kinds of things like maybe becoming independent someday– I mean, there are things I can do alone and things I can’t, so I’m thinking about how to go on with my life with the support and cooperation of society, friends, my community, and all these people I’m connected with.

So your life has completely changed because of the disaster.

It has. My living environment has changed over and over, and sometimes people have said to me, “How nice you’ve moved into a new place,” but sometimes I’ve struggled with it. It’s really hard because I have to start from scratch learning to recognize my environment. But even so, through the activities of the Friendship Association, I’ve gone from being unable to do anything since becoming deaf-blind to having opportunities to learn in seminars and going to Tokyo, and even to Kobe and Shizuoka for national meetings. I’m able to do things that I would have thought impossible not long ago. I’ve met friends and supporters all around Japan, and now we socialize and exchange information. I’ve also been invited to speak at seminars in other prefectures, so my world has really expanded. Just going out and getting one piece of information led to all these connections. Visually impaired people are also called information impaired, and of course that applies to deaf-blind people as well. Rather than just asking myself why I can’t do this or that and being negative, I want to keep learning to find concrete solutions and think about what I can or can’t do or explain. I’ve learned to think like this thanks to the Friendship Association’s activities and all the people I’ve met.

How would you like abled people to offer their help or support when they see a disabled person, such as a deaf-blind person, in their neighborhood who appears to be having trouble?

Visually impaired people and deaf-blind people will be startled if you suddenly talk to them. So it’s best to gently tap them on the shoulder before speaking. Then you can say, “I’m so-and-so, and I’m wondering if you’re having trouble? Do you need any help?” It’s best to understand the person’s situation first, then provide them with whatever assistance they need. Deaf-blind people are also hearing impaired, so you need to find out how to communicate with them. I don’t think awareness and understanding of deaf-blind people has spread much in society yet, and part of the reason I’m doing what I do is in order to spread that awareness. There are all kinds of ways to convey information like speech, close-up sign language, tactile sign language, writing, writing on palms, finger braille, and so on. This is something I learned through interpreter aids, but deaf-blind people can often think and act the same way as everyone else when we are just told, right now so-and-so is making this face, there’s this thing here and this is the situation, and so on.

Is there anything else you would like people to know about visual impairment?

Different visually impaired people have different environments and different access to information depending on where they live. Public transportation varies by area as well. For people who are only visually impaired, they have various ways of getting information orally. I can’t use them, but there are many people who are skilled at using smart phones and tablets by voice command. But there are also lots of people who don’t know about those methods. Though some people might find that information unnecessary even if they discover it. And about braille, a lot of people might think all visually impaired people can read braille, but braille users make up only 10% of visually impaired people. People also tend to assume hearing impaired people know sign language, but only 10-20% of hearing impaired people are proficient in sign language.

Really? That’s less than I thought.

Also, I’m sure everyone can recognize a visually impaired person with a cane, but I’d also like people to know what visually impaired people need, how to talk to them, and how to assist them. There are all kinds of specialized organizations, so I hope people will work with these organizations to spread information far and wide for improved understanding and awareness of the visually impaired, hearing impaired, and deaf-blind. It would be great if we could get the assistance we need when we need it.