Learn from the powerful practice of the local! : Our own voicesﾓ from Okinawa!

　　　　　　　　　　　　　　　　Reiko Nagai
　　　　　　　　　　　　　　　　PresidentDeputy chairperson
　　　　　　　　　　　　　　　　NPO Okinawa Independent Living Center Iruka

We interviewed Ms. Nagai, the president of the Independent Living Center in Ginowan City, Okinawa Prefecture, on the current situation of the activities and the future prospect. The key is to support young people to become independent. Here is the voice of the femaleactive women person with disability.

[Profile]
Representative of NPO Corporation Okinawa Independent Living Center Iruka, since 1997. Established NPO Corporation, PAI Okinawa Self-recommended Helper Station, and assumed the position of vice president in 2001. Permanent Steering committee member of Japan Council onf Independent Living Centers (JIL) since 2001. While being an active peer counselor, she's also a mother of two children.

Q: On October 20, "Big National Event Campaign to Establish the Community Living of Persons with Disabilitiesy" was conducted. First of all, Ms. Nagai, we would like to ask you what drove you to participate in the national campaignevent.
Nagai: That was the second time I took part in a demonstration. The first demonstration for me was the national event campaign on June 9, when I was impressed by the fact that there are actually so many persons with disabilitiesy. I couldnﾕt help crying during the demonstration, wondering, "Why do we have to appeal like this just to live a life? It's not fair.", as I walked. In the typhoon, everyone was wearing a raincoat. And I thought, "It's cool! There is a will here." Don't you think it's cool to struggle so hard just to live, while there are many people who don't know what they are living for?
Living in Okinawa, we are not provided with various kinds of information. Regarding the limitation of subsidy, there was an air of considering it as somebody elseﾕs problem, like "I hear the subsidy system is going to change. Thereﾕs nothing we can do about it." There is a tendency of resignation, not trying to improve life.
Q: It seems that the lack of financial resources is recently reflected as the reduction of community services. What is the situation of Okinawa, and particularly Ginowan?
Nagai: The time of nursing care service has been always very short in Okinawa, and before the subsidy started, there were no home services that provide total physical support. There were very few facilities, and only in two cities, providing transport care and guide helpers. Ginowan City where we live had none. So, when the subsidy started, it was like, "Wow! It changed a lot!" But still, it is only about 6 hours a day. I hope it will extend for 1-2 hours in a year through management within the community. However, we are very poor in negotiation. None of us are used to aggressive negotiations. But still, we intend to relate the performance in Okinawa to the rest of the nation.
After the event in June, some of my colleagues started suggesting compromises such as unification with the Nursing Care Insurance or total payment, which upset me so much. Those suggestions were turned down after all, but the idea that it would be okay in Tokyo made me so angry. I thought, "All you think about is only Tokyo." In Okinawa, some areas are managing to secure a certain amount of nursing care time, but in remote islands, even the helper services are not available. It would work in Tokyo, but absolutely not in Okinawa. Iﾕm totally against it.
Q: What was your motive to be involved in the movement of persons with disabilitiesy?
Nagai: I was educated together with people in normal healthothers up to nursery school, but after that I was separated because of the disability. I clearly remember how I defied when I was a 5th grader, wondering, "Why are only children with disability disabilitiiies put together in a place like this?" I was determined not to obey adults. Persons with disabilitiesy will be eventually sent away to institutions however hard we studyand work. Therefore, I decided to give adults a hard time intentionally. At that time, the concept of independence was totally different. Trying hard among able bodies persons in normal health was the idea, but I couldnﾕt keep up with the speed, which frustrated me so much. I was wondering if it would mean independence to get married or have children. Because I was that kind of person with disability, people kept saying, "You are doing great!" But it was very hard. That's why I was attracted by the concept of independence in the independent living movement. I cried when I was told that it was okay to be myself.
Q: Please tell us about how the Independent Living Center was started.
Nagai: The project started when Mr. Shinmon left the National Hospital after more than 20 years of hospitalization. We knew each other since childhood, and each time he said, "I want to get out of here", I answered, "Yes, it would be great." But a part of me always thought it was impossible. Mr. Shinmon said, "I will leave, because I am going to die anyway. This is my life." When he actually did it, I was amazed at how reckless he was. But as I like his personality entirely, I accepted on the spot when he asked me to establish an independent living center with him.　Because we didn't have enough money to start a center, we made funds by holding events for about 2 years, when we learned the know-how which is still useful. To sell merchandise, to negotiate, and to be humble. The people I met and worked together with then are still my friends.
Q: How many people are receiving your home nursing carepersonal assistant services currently?
Nagai: It increased acutely since we started the helper project. I think itﾕs a little less than 50, but I intend to reduce it gradually. I would like to focus more on those we are willing to leave institutions and be independent in the future.
I would like to associate with nursing schools with children suffering fromwith muscular dystrophy, but the teachers there do not take us seriously. There are 3 nursing schools near the Independent Living Center, and I believe that nothing will change unless the nursing school teachers change. Therefore, I visited them and asked them to put up posters whenever there is an event. While doing so, I happened to be invited to a training session of special education to give a lecture, where I revealed all the bad things about nursing schools, saying, "This is why persons with disabilitiesy are destined to be in trouble when they grow up! It's all your fault." With that as a trigger, I started to associate with the teachers who had been transferred from normal ordinary schools and feeling that something was wrong. Through those teachers, children started to visit the center. It was about 3 years ago. The children asked me, "Will we be able to be independent?", and I answered, "Of course." Last year, a child with Duchenne muscular dystrophy who wanted to go to college came to me, trying to leave the hospital, and I said, "Your life is limited. There is no time to hesitate."
Q: So you are going to reduce the number of home nursing care services which has been increasing owing to the incorporation of the subsidy, and start supporting young people?
Nagai: Right after the subsidy started, the organizations of persons with disabilitiesy apparently thought they could use it in any way they liked and started using it in spite of the difference of concept on independencey. When we train helpers, I say, "Don't move. Itﾕs not your life. It's the life of persons with disabilitiesy.", so they just keep on waiting. Then the users complain, "Your helpers are not kind." I always answer, "If so, you should go somewhere else. They will clean your houses without even asking. We will never change our way."
Q: What kind of organizations are theretyou have? How many people are in the staff?
Nagai: There are home helper projects called the Independent Living Center and PAI Okinawa, and both are doing the same thing. But whenever I interview a helper, my conditions are to be involved with the Independent Living Center and to become a member. I don't accept those who want work only as helper. Therefore, hurdles are higher for persons with disabilitiesy. In addition, we are operating a workshop and a support project. People who need a certain extent of social experience go to the workshop, where they go through independent living program instead of work. "I want to go to a movie." "Then go." The recent interesting requests include this. "I want to make police boxes barrier-free." This person made a bank barrier-free before challenging police boxes. He/she communicates in finger alphabet and is really good at it. He/she asked in finger alphabet the branch manager of the bank to turn an aisle into slope rampin finger alphabet, and the manager promised to discuss it during a meeting. That's how all the banks now have rampslopes. It was such a good experience that he/she is now trying to change police boxes into somewhere he/she can drink tea in wheelchair, taking pictures of steps and exhibiting them in the welfare festival. I canﾕt observe everything, so I have asked the workshop leader to just let them do what they want to do and report back to me later. There are the workshop and the support project in the center, and there are more than 30 people in the staff. Including the registered helpers, there are more than 100.
Q: How did you spend the past week?
Nagai: I left Okinawa for Nagasaki on 14, and went to Kumamoto on 17. Iﾕm touring to know the situation at each center for turning organizeing JILﾕs into a Kyushu block. After Kumamoto, I arrived in Tokyo on 19 and participated in the eventcampaign. The children have started to call me a ﾒroommateﾓ.
Q: Lastly, please tell us about your prospect for the future activities.
Nagai: When I started the activities, I originally wanted to work for children, so thatﾕs what I will be doing. Independent living would not be as difficult as this if the environment of children is improved. No need to change parents, either.

(Interviewed on October 12, 2004)

(This paper first appeared in Vol.20-3, It was presented at "Programme for MAINSTREAMING AND EMPOWERMENT OF DISABLED PEOPLE IN SOUTHERN AFRICA", training course organized by Japan International Cooperation Agency on 3-30 July. 2005 at Tokyo abd Bangkok, and was translated by JICE)