To know

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.

The role of social workers

The real estate agents discriminated against us, but on the other hand I also think the people of this world are truly kind. I felt that way at the shelter.

Some people were like, “What do you mean, disabled?” because they just didn’t know, and so when our staff stepped in and explained it to them, they were just like “Oh okay,” and naturally accepted it. I think one of our roles is to be like coordinators who connect with people who aren’t yet aware of disabled people and their conditions.

I experienced that living at the shelter. I asked our trainees if it was okay to tell people about their disabilities just in case they needed help, and after obtaining their consent, I told the abled people in the shelter.

Once when one of our trainees was taking his medicine, someone asked us, “Is that guy feeling sick?” It seemed they were just curious. When we answered, “He’s taking his medicine from his psychiatrist,” the person was like, “It doesn’t seem that way. I couldn’t tell.”

When we step in and explain like that, they feel at ease and want to learn more about disabled people. Then they even help watch over them. That’s really nice. It’s mutual understanding. It’s important for people to know.

Disabled people who came from shelters

It’s hard to lend a hand to weaker people when you’re evacuated and weak yourself.

Tada: At the time of the disaster, I was working at a disabled counseling center in front of Ishinomaki station. After it happened, I went to one of the houses I make rounds to for work. There was nothing left on the first floor (because of tsunami damage), yet there was a severely mentally and physically handicapped person living on the second floor.

Then when I talked with that person’s parents, they said that at first (when the disaster happened), they took refuge in a nearby school. But they had to leave that shelter that night, so they stayed in their car for a long time. Their child is severely handicapped, so at night the child had made noise (because of symptoms), and the other people there had said heartless things. But it got hard just staying in their car, so they went back to their house. Then, the first floor was destroyed, but they were somehow able to get to the second floor, so they went up there. Hearing this story made me realize that when people are in a difficult enough situation, rather than feeling sorry for someone with a disability, they’ll just be like, “Shut up, we can’t sleep.”

Kayoko: Yeah, that’s who you become.

Tada: What you don’t know is scary. That’s what it really means.

Yasuko: But I think it’s almost always like that.

Tada: That’s why so many disabled people and their families couldn’t go to shelters.

Kayoko: So you know, these disabled people are blamed by non-disabled people in an atmosphere where no one understands. They don’t feel comfortable staying in shelters, so they stay in their cars, or they have nowhere to go but their houses even though the houses could collapse at any time. That must be really hard.

Thoughts

Would you say that your life purpose now is your massage work, and the information sharing and job creation network that you mentioned earlier?

Yes, I try to focus on those things. And yet sometimes when I’m watching TV and such, I’ll start talking to myself. I don’t want to remember (the disaster), but I still remember it. Even if I try to forget, I don’t suppose I can. There’s no way to forget, after the things I went through every day. Because I’m alive, and I survived. So I say to myself, you know what, I’m going to keep smiling. I drink alcohol too sometimes, but sometimes I also cry. And I tell myself, I’m going to keep living a little longer. I guess I’m comforting myself. That’s how it’s become.

So the disaster has strengthened your conviction.

That may be. I’m sure different people have different ways of thinking about it, but I think maybe everyone has gotten stronger.

I know you’re very active. I think people like you spreading this message give everyone else strength.

Well, that is the goal.

I think there are a lot of people who still don’t know about all the support available to them. If we can get the message out to those people, it will really enrich their lives and help them live fully.

I hope they might come to us, to work together with others who want the same things. My other visually impaired friends are always looking for some way they can help too. Rather than just waiting around, they get help from the local government and the Council, and use the radio and newspapers.

You said you’d like visually impaired people to get involved more. Do you think a lot of them are reserved? Or do they just not have opportunities?

I guess they don’t have opportunities. They probably don’t know what to do. I think that’s the issue. For example, even if you talk to someone from the government at a mixer, I don’t think one time is enough. You have to participate a few times and then think about it. If you just hear about it one time and then jump into action, you won’t keep it up for long. You have to take your time to think it over.

So first you just have to participate.

Yes. I want people to participate, and for that purpose we need to get information to them.

The reason you want these people to get involved is because you want them to find their purpose, right?

Yes, I want them to find their purpose. If they don’t want to go out in public, they can use the various audio information that’s available. For example, there’s Plextalk (a device for visually impaired people to listen to and edit audio). If you ask your local government office, they’ll issue you a Plextalk. Some people don’t know such services exist. Someone will even come teach you how to use it if you need them to. I imagine they would even do a training session in your home for three or four people. I want us to reach that point. For that we need the help of the government offices and the Council.

I’m sure not all visually impaired people are as positive and proactively social as you are. I get the impression you’re playing the role of giving those less social people a push. Hopefully more visually impaired people will be able to obtain information so they can choose what they want to act on.

For sure. There’s nothing better than choosing for yourself. Maybe some people will feel like being active too. Then they could get involved in disabled sports.

Information expands your world.

It does, definitely. That’s why it’s such a shame not to be informed.

It’s a shame not to know.

Information is really what it’s all about. That’s what I want to do something about.

You’re a powerful person, Mr. Tatsumi.

Well, there are a lot of amazing people out there. But it’s nice being able to do all these things, with the help of all these people. A lot of volunteer organizations sprung up in Ishinomaki after the disaster. I hope these organizations will build stronger connections with disabled people. It seems like people are out there doing all kinds of things.

So that’s the next goal.

Hmm, yes I think so.

The house Mr. Tatsumi was living in before the disaster was completely destroyed except for its foundation. There were many deaths in the area, which speaks to just how unexpectedly huge the tsunami was. This interview brought home not only the importance of connections Mr. Tatsumi spoke of, but also the necessity of preparing for major disasters.

Thoughts after experiencing the disaster

 Do you feel like you’ve changed mentally or physically since experiencing the disaster?

Yes. I lost a lot of weight. My daughter did too. My daughter, who was in her first year of junior high school at the time, helped me with a lot of things, but she also panicked sometimes. What my daughter hated the most were the warning announcements. She got scared every time there was an announcement that water levels would rise or the roads would be blocked if it rained. Whenever there was an aftershock, we would immediately wake up, grab our things, and leave the house. It was really mentally exhausting doing that over and over.

We put a bunch of portable LED lamps and flashlights in our rooms to make sure we had lights when we went to bed so we could take those and immediately flee if something happened. We still have them now. Food, too. We still stock up even now.

So your disaster prevention awareness has increased. What were you doing to access emergency information before the disaster?

I accessed it through TV and my smart phone. I used apps and stuff. Whenever my daughter is gone at school or something, I can’t get any information orally, so I get it by watching my smart phone and the TV. When I’m out, I often think it would be nice if there were electric notice boards or something. In my case, I have to go ask people in writing what happened, or use my intuition to try to interpret what people around me are saying. If I keep asking over and over, after a while hearing people start to avoid talking around me because they don’t want to be rude, and then I start to feel bad about bothering them. I would be grateful if there was something I could see visually in addition to audio broadcasts.

After experiencing this disaster, do you have any advice or suggestions on preparations we should make for hearing impaired people?

I saw on the news about the Kumamoto earthquake that some families with hearing impaired members didn’t get information and missed food distributions for three days. I know the situation of each shelter is different, so if you’re hearing impaired I think it’s important to tell your neighbors you can’t hear, and although it might make you uncomfortable, you have to tell them with a smile. Rather than looking pained or disgruntled, if you just say, “Could you help me out?” people will say “Sure.” I heard one deaf person say, “When I’m the only deaf person surrounded by a bunch of hearing people, I tend to hold back and feel somehow ashamed.” One disabled person also said, “Putting abled and disabled people in separate rooms might also be a good idea.”

What sorts of things should hearing people be aware of when helping hearing impaired people?

Since you can’t identify a hearing impaired person by looking at them, I think it’s important for hearing impaired people to tell those around them that they can’t hear. You have to tell them yourself. But there are some people who don’t say anything. Of course this also depends on individual personalities. There are also some people who get frustrated, thinking, “No one helps me even though I can’t hear.” So I think it would be easier if supporters would start by writing on paper, “Is there anyone who can’t hear?” “Does anyone have a disability?” “Is anyone ill?” “Is anyone on medication?” They should check for these things first and then respond accordingly. I think it would be good if everyone could see and share this information before receiving support.

Is writing the simplest way to communicate with a hearing impaired person if you don’t know sign language?

Yeah, I think writing is best, but gestures are also effective.

Is there anything you want hearing people to know? Any requests?

Yes. Hearing people can listen to conversations or warning announcements to find out a tsunami is coming, but people who can’t hear don’t know. When an emergency happens, I would be grateful if hearing people would include hearing impaired people. Even just taking us by the hand or a piece of clothing is fine. Rather than acting of their own accord, I think hearing impaired people tend to evacuate by watching and imitating hearing people. If you don’t have any paper, you can make do by writing on your hand or using gestures or facial expressions to help hearing impaired people evacuate with you. It’s fine to split up after that. I’m talking about immediately after the disaster happens.

Then you also need flashlights. We can communicate by writing on paper or typing on a smart phone screen and showing it to hearing people. A flashlight is essential so we can help them see in dark places. Now there are convenient apps that enlarge the letters you type. When we don’t have anything to write on, we use smart phones and such to transmit and receive information. But when the battery dies, it’s over. When the battery gets low, you get anxious.

Changes in perceptions

Did you have measures set for earthquakes before the disaster?

We didn’t prepared anything special. Only materials we prepared for disasters were candles and flash lights. We added radio after the disaster. We can’t take out car radios, so we now have portable radios and batteries. We keep lists of contacts such as telephone numbers of our trainees in our service cars now. We also added chargers for mobile phone.

Did people experience changes in how they see things before and after the disaster?

I suppose family members of the trainees experienced changes. People witnessed incidents that took life so quickly. Parents seemed to have started thinking in detail what would happen to their children with disabilities if those kids lost their support. If the children have siblings, these can help them, but not all have siblings. Who will take care of the children then? That’s what parents started wondering. Some opened bank account with their children’s names. Some are trying to obtain special category status for their kids so that they can receive residential care services. Some of these parents send their kids for short stay programs to prepare them for residential care. People started thinking about practical matters on what they can do for the time they leave the children.

Final question. Is there anything you want persons without disabilities to know or things you want to tell them?

We produce bread and cookies at Himawari. These products are tools to facilitate people’s contacts, I believe. The trainees talk to people when they sell our products. With smiles on their faces, they take these products to clients’ residences or offices. People will see that persons with disabilities can also be so cheerful with smiles. I believe that it will be much easier for the trainees to ask for help to someone they have met before when they lost any other support like their family or workshop staff. We are trying to increase the contacts they have with local people. I’d really like to build a base for the trainees with disabilities to be able to keep living here in Kesennuma. Our tools to make this base are these sweet flavored cookies and bread with fresh aroma. These tasty food items help people to get to know each other. I am hoping that the trainees, not only make monetary reward by selling these, but also build their connections to local people for their future. We are now visiting with our products 17 offices such as local companies and local governments. It is more important that people get to know that our trainees are always cheerful and with smiles than they know what Down’s syndrome is or autism is. I am trying to get rid of discriminations against persons with disabilities through these projects. Cookies and bread serve as tools to let people know about the trainees, who are working hard, lighthearted, and with full of smiles. Our trainees can’t live by themselves, but with some supports they can live and shine with smiles. It’s hard to talk to people if you don’t know them. Knowing people makes communicating much easier.

Communication is very important I think. That leads to preparedness for disasters.

I believe that’s the most important thing as preparedness for disasters. Candles and electricity are important, but being able to ask for help and having a secure gathering space are the best ways to keep people safe at disasters.

Message to people

Do you have anything that you want tell people about daily things?

A friend of mine who participates in activities of Nyokkiri-dan is doing welfare trainings at elementary schools. Children nowadays have much more opportunities to relate to welfare than when we were kids. They don’t get too curious about wheelchairs for example. I think that adults have more prejudice. Kids are simple, so they stare at things that are new to them, and it is normal. I think they are used to seeing persons with disabilities. I’m saying it in a positive sense. I expect that when these kids are grown up, Japan will be really a good country to live in. It is very disappointing to see adults saying to kids something like “Don’t get close to these people.”

It is us adults who need to learn more.

I heard that children are learning in their ethics class different things such as how to use wheelchairs or how people feel when they have hemiplegia. We didn’t even see persons with disabilities when I was a child. The environment has changed.

Do you have occasions when you go out by yourself?

I go out by myself to stroll around in the neighborhood. When I go for shopping and things like that, I ask someone to drive me there, and then I move around by myself. I went to the prefectural art museum to see exhibitions with friends of Nyokkiri-dan this summer with assistance of professional helpers. It was really fun.

I can see that Nyokkiri-dan has become a very important group for you Mr. Tobikawa.

Yes, it has. It is nice to have a channel to consult with the city authorities or to bring your opinion to them. It is also nice to have a forum of exchanging information, and friends you can go to see art exhibitions with. I think people need to have these opportunities. I hope more people overcome their worries and come close to people like me. We are not so special, just that our bodies move less. People’s hesitation to approach makes us difficult to talk to them. You can just be natural. When people ask “Are you ok? Really ok?” with too much willingness to help, it is too heavy for us (laughing). In emergency situations, however, we’d rather like people to come straight to help us. It’s all about balance, I guess.

I see. So, we can show that we are willing to assist even with our limited knowledge on disabilities.

In some cases, we are to be blamed for not clearly say what we want people to do. I myself get a bit nervous if I meet a person for the first time. Personal relationship is a sensitive matter even for persons without disabilities, right?