Connection

A decision, and the future

The month after the disaster, we were able to rent a space in the Tagajo Elderly Welfare Center and reopen our facility. It was supposed to be just until September, but we somehow got them to extend it until December. Then one day we happened to find a newspaper article about a suitable property and moved into the Recovery Park (in Sony’s Sendai Technology Center) in January the following year.

We had hoped to find a place and rebuild in 1-2 years, but we just couldn’t find a location or land to move to. We did consider our original location, but then we thought, what if the same thing happens again? We wanted a place we could feel safe, where no tsunami would come, and so it was rough going finding the right place.

However, we were being pressured to make a decision to rebuild or demolish Sakuranbo and Ouka  by June. It was a big decision, but we ended up deciding not to rebuild in the same place.

We had lost everything, but we were strangely at peace because we were all together. We were able to find the will to keep going step by step. We staff do this job (social work) because we like it. We had to keep supporting our facilities. We had to be the voices of our trainees. It was like having a message to share brought us together.

Our relationship with local community

We don’t have much recreational activities with local people. Our connection with them is mostly through our service such as collecting items for recycling.

Most of our collection for recycling is done in the local area. We first leave flyers at each residence to let them know about the collection. The flyer says “Please leave the items at your doorway on the date and time indicated. We will pass by and pick them up.” The population in Shiogama is rapidly aging as well, and even taking a bundle of newspapers to collection points is a hard work for elderlies. They appreciate our service very much and often thank us when we visit and pick the item up.

We greet them too. It is very important that we properly greet people, and we emphasize on this point to our trainees. Furthermore, we have kept our promise of coming to pick things up on the date and time announced. In case we can’t do so, we tell people in advance. As we have fulfilled people’s expectations, the demand has never decreased. Some people start putting items for recycling and then keep putting more in later collections. Some people observe first how things come out. When a block in a neighborhood had ten households and only two of them put recycling items in our first try, for example, we keep leaving flyers and going to pick the things. We will see three households putting items, and then four in the next time. The number gradually increases.

I think local people know well that we have kept our promises and fulfilled our tasks. They trust us and rely on us, so when items are not picked as was promised, some people phone us to complain. We deal with these cases immediately to keep the good relationship we have established with these people. The good relationship we have is a result of all the efforts of staff and the trainees. People have known us for quite long time through our work. People mention our name at all our sister facilities and say “oh, you are a group facility of Sakura Gakuen.”

The importance of connections

You said you contacted the Miyagi Prefecture and Yokohama City Visually Impaired Welfare Associations while you were in Yokohama. Was that because you wanted something to do?

I suppose so. I didn’t know what was going to become of me, and I think it was really good for me to build relationships with local people. I still maintain a lot of those relationships now.

So you’re still connected and stay in touch even from afar.

Yes. I started attending the Yokohama Visually Impaired Welfare Association ping-pong club after the director of the vocational support center introduced it to me, for instance. I felt bad for receiving help all the time and not giving back, but I really was fulfilled.

So even in that situation, you always had the desire to contribute somehow.

It’s nothing so noble as that, but I did feel like I wanted to do something. I’m still exploring it at the moment, but I’m thinking I’d like to do something to help visually impaired people in the Ishinomaki area find jobs. Some of my friends feel the same way too. Helping visually impaired people find work is quite difficult, but you won’t get anywhere if you give up just because it’s hard. For example, there’s a vocational support center for the visually impaired in Sendai that makes braille business cards and envelopes, and my other visually impaired friends and I are trying to find a way to do that ourselves. We just want to do something tangible. Once you have something tangible, then it’s easy to show the local government and such, and you can see the next step. We plan to keep moving forward with the cooperation of the local government and the Council. I also feel like the information network for visually impaired people isn’t very reliable. Information just doesn’t tend to make its way to us. Not all visually impaired people are part of a Visually Impaired Welfare Association. They might stay away from the Associations because they don’t like that kind of formality. I want those people to be able to get information, too.

You seem to be very active. Was any of this inspired by the disaster?

I suppose so. When I was in Kitakamicho, the public transportation wasn’t very convenient, so I stayed cooped up at home a lot. But then my parents died the year before the disaster, and I was all alone. I was thinking about what to do when the earthquake happened and I had to leave my hometown.

When you returned to Sendai from Yokohama and moved into an apartment, were you alone?

I was alone, with just one room. The apartment was privately owned, but the government treated it as temporary housing for disaster victims and paid the rent.

Did you receive any assistance there?

I had a home helper come help me with everyday things. Volunteers from Eye Support Sendai and the Japan Guide Dog Association Sendai Training Center also came. I also had a helper to assist me when I went out. I’ve learned to walk on my own so I can do it, but I’ve also heard of accidents happening, so I have someone help me whenever I go out.

Were your neighbors aware of your visual impairment?

I used my cane when I walked, so I’m pretty sure they knew.

Did any of your neighbors ever help you when you were walking, for instance?

I had a professional helper, so the neighbors didn’t help me, but once when I was practicing walking outside, someone said, “Feel free to let me know if you need help.” That was really nice.

I’ve heard from other visually impaired people I’ve interviewed that adapting to a new environment is really difficult for them, and that when they move into a new place it’s really frustrating until they become familiar with the space. Listening to what you said just now, I thought it must be really difficult for you to cross an intersection on your own and figure out how wide it is, or figure out how high steps are.

I think it’s more difficult indoors. Foot bridges and things like that have handrails and steps at consistent heights, so it’s fine. It’s in the inconsistent places, like really wide spaces, where I completely lose my sense of direction. When I was living in Sendai, I had just one room with a kitchen, a bath, and a toilet. So I could always stretch my hand out and touch something. I think that’s best for living alone. But it’s been more difficult recently living here (in a new house in Ishinomaki City). I moved here on August 7th last year, and a moving company moved all my things here so I had no idea where anything was. I couldn’t find the dish soap or anything. There was something that seemed like a drink sitting next to the stove for a while, but then I thought, “Wait, this can’t be a drink.” It turned out to be toilet cleaner! I ended up stumbling around running into things until I managed to rearrange them.

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.

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.

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?