Support for mental patients who are in the shade of public aid

Toshiko Kishi is one of the nominated members of the Sakuya Hime Project.
(A project to build a gender-equal human resource debate in Shizuoka .
The Sakuyahime project aims to empower Shizuoka women and develop female leaders for the next age. It was launched in 2010 by the Shizuoka Prefectural Government Office.) Toshiko is a mother who lives in Fujieda city in Shizuoka Prefecture, Japan, making a great effort to provide a place for mental patients who are in the shade of public aid.

Toshiko Kishi is the C.E.O of the N.P.O Group home and restaurant “Bakery Caffe Wind”. Written below is the process of how she started this project.

The tragedy when my second son Ryo was involved in an accident on the way back home from playing outside on his bicycle happened in September, 1992. When I was cooking dinner, my neighbor suddenly rushed into my home shouting “Ryo, Ryo! He was involved in an accident “.She said he was hit by a car. I dashed to the place where the accident happened, close to my house. He had been run over by a car coming the wrong way on the one-way road. Ryo had already lost consciousness, the right side of his head was crushed and a line of blood was running from his ear. He was not breathing. An ambulance took him to the hospital and an operation was done immediately, but the doctors told me that there was no hope of survival because not only his right brain, but left brain was the damaged, too. There is a 99.9 % chance he will not survive. There is no way to make him survive. I told the doctors “ If you say no hope of 99.9 %, there is a 0.1% hope, I bet on 0.1%. Open his head again now, in front of me. I will never regret even if he dies with that operation.” I begged the doctors. I did not want to give up 0.1 hope. Heisei  Memorial Hospital is a well-known hospital for brain surgery. Doctors granted my request, and an operation was done again.  I even thought if this operation turns out to be an experiment on the human body, I would accept it. After the operation the result was that his consciousness did not come back, but at least he did not die at that time. Doctors said “We can’t tell that he can live one day or two days, There is the possibility of his becoming a human vegetable.”  At least I was satisfied that he could survive by the operation .I was given the hope he might be able to live one day longer. Actually he could live three days, I told the doctors. “He can live three days.”  Doctors only answered ,“Yes, he can.” He lived four days ,five days and at last one week passed since the doctors had given up.
The person who caused the accident came and said,  “How can I pray?”  I only answered,   “Pray for him that today’s situation lasts even one day longer”.     I was not thinking he was cured, I just hoped to keep him living even one day longer.

In the ICU, I kept playing CD player, making him listen to music. After one week passed, an examination of the brain waves was done, and surprisingly his brain waves were rising slightly. This showed proof that his brain was not dead, but still in unconsciousness. Also he was not breathing by himself. Doctors gave me permission to do everything that I wanted to do.
His skull was severely damaged, only the center of the skull remaining. That means his brain was not covered by the skull. If something touched his brain, his life was endangered. I made a floss pillow and put it around his head also I put my two knees preventing anything from touching his headt, and kept playing CD, and cauterized moxibustion point . I was waching his face for 24 hours except going to the toiret.
I tried everything that I could do. I was surprised that doctors gave me permission to do everything. Nurses and other patients encouraged me.  Ryo’s consciousness did not come back, his condition was still remaining the same. But the miraculous thing happened, I saw his fingers were moving. Doctors did not trust me and said “It can’t be happening.’ Since then doctors began to think that he might survive. His condition was improving rapidly. One day, he began to say something, one by one, ‘o’-“ka”-“a”-“san” connecting each sound that he said was, “take me to the hospital by your red car.”
At that time I had a red car. I had the confidence that he must have said “Mother, take me to the hospital by your red car.”  He definitely said that. It was his first word after the accident. He must have remembered the time of the accident.

2). Unexpected After Effect of Miraculous  Recovery
Soon after that, he opened his eyes, although the right eye was crushed and blind. He couldn’t stand up, let alone walk. Because most of his brain was damaged, it did not function. Miraculously, even though he had lost all his memory, he could recognize me saying “mother”.
Doctors gave me the fragments of his skull. I tried to put them together trying to remake his skull by using strong glue and cement. A new skull was made, but if something touched his head, he got the extreme pain. He expressed his pain as “my head is exploding.”
He left the hospital in December three months after the accident happened, and went to school from January (in Japan third term begins  in January.)  It was a miracle! When he was involved in the accident, his brain damage was too big, doctors completely gave up on saving his life. It might sound like he recovered rapidly, but not rapidly, little by little taking time. At the same time a more difficult time began. After effects of the brain damage caused many kinds of problems.
His frontal lobe, the front part of the brain necrosed, which made him lose emotional control. Above all, many places in his brain hurt. He had an epileptic fit. He went on the rampage. He continued to be hospitalized repeatedly.
I think when he got back his consciousness after three months passed, he was born again as a thirteen year old boy.  Only three months made him a thirteen year old boy. There was an imbalance, which he had to adjust himself by battling with the after effects.
Doctors advised me that I might be thinking he is recovering in this pace, but his condition is not simple as I thought. Actually I didn’t have any doubt about his speedy recovery which occurred in this three months.  Unfortunately he did not recover as I imagined. I took him to a lot of hospitals searching for ways and doctors to cure him.
One day in the car, on the way to the hospital he suddenly lost the emotional control and began to behave violently.  I can’t tell how many times I was endangered by his behavior.
My son’s accident made me start my presents work. I was ignorant about welfare. Through my experience I got to know how families who have mental patients suffer from hardships.

3).Ryo’s case
There were no institutions to accept him. He has both social handicaps and mental handicaps. At the institutions for social handicap, his intellectual level is high, and he could not communicate with mental patients in the mental hospitals.
He went to the local elementally school, but he couldn’t keep pace with other children.
He grew up to the age of junior high school, but he could not go to school every day.
Teachers suggested he to go to school for handicapped children, but he was different from the handicapped children born by nature. He refused to go to the school for handicapped children. He went to local night high school. But he went to school just
One day.  I looked for a school or institution to suit him and found one in Nagoya. Nagoya is very far from Fujieda city. He would have to live in the dormitory. He did not want to stay there, and escaped from school on the day he arrived. He did not know how to come back home. He had to ask people how to buy the train ticket.
The last choice for him was a mental hospital. He was hospitalized in a mental hospital, but patients are permitted to stay there three months at the longest. He stayed for three months and came back home and went on a rampage. Such conditions continued.
I was completely exhausted. Sometimes I wished for his death. When he had his accident, I did everything to help him survive. I only prayed for his survival, but I really wished for his death at that time. Never had I thought such a thing before.

4).The Decision
I finally reached the decision that there was no way except to make a place for him by myself.
I rented 198 sq meter of land and began to grow vegetables with him. I had the confidence that working outside in nature must be the best way to cure his mental condition.  Another reason was that I realized there were a lot of people who didn’t have a place to go, when they had both social and mental handicaps. There were no places to accept them. They had to stay home as recluses. They didn’t like social contact. Gradually mothers who had such kinds of problems began to gather around me, and we tried to share how to solve the same kind of problems. The reclusive people also began to gather at my home, spending the days with Ryo.
I wanted to give them the joy of working on the farm. We grew chemical free vegetables, egg plants, cucumbers, and tomatoes. I paid them per hour, and even a small amount gave them the pleasure of getting wages by labor. All I wanted was to let the know the joy of work.
We tried beekeeping, made boxes by ourselves and got honey.
But there were problems. Ryo sometimes began to go on rampages, so agricultural machines and scythes were dangerous.   In the farm, one idea suddenly came to my mind;  “growing wheat and baking breads “  But wheat for the bread is usually cultivate in a cold climate. Fujieda city’s weather is very mild, and isn’t suited for growing wheat.

5) Nishino Hikari
I got the information of an academic meeting about domestic wheat to be held in Tokyo. It was 2002. I took part in that meeting. There was a researcher of Nishino Hikari, a breed of wheat for baking bread, which grows in areas with mild weather. Kyushu and Okinawa agricultural institutions were researching this breed.  Kyushu and Okinawa are located in the southern part of Japan,  It was still difficult to get these seeds. I begged researchers to give me them telling them why I wanted to grow this wheat, and bake bread with handicapped people in Shizuoka Prefecture. They granted my request and gave the 20 kilograms of seeds.
Growing Nishino Hikari was extremely difficult. I can’t tell how difficult it was in the words.
None of us had experience growing Nishino Hikari, Above all, the rainy season was prolonged that year. We did not use insecticides, so the wheat got damaged by insects. I didn’t even have a reaping machine, so I reaped by scythe alone 198 meter sq farm in the rain.
Another problem was there was no place to store the wheat. I visited farmers in my neighborhood, and asked to lend the barns to store them.

6))Opening of “Bakery caffe Kaze”
At last, I reached the time of opening the “Bakery Caffe Kaze” in November 2002.  Kaze literally means wind in Japanese. I used the compensation of the accident and my savings for the construction of Kaze. I didn’t know about the compensation for a long time. One day the insurance company’s man visited me and asked “Are you expecting something for the compensation?” I could not understand what he meant.  At that time 8 years had passed since Ryo was involved in the accident. Never had I thought about the compensation, I devoted all my energy to finding Ryo’s hospital, farming and his place to belong.
Before I opened Bakery Caffe Kaze,  I established “Kaze” an NPO. The aim of the construction of “Bakery Caffe Kaze” was to make a working place for reclusive people, like Ryo, who have no place to belong in the society. I publicly informed reclusive people about working here. 10 handicapped people and about 5 volunteers came to work.  Our effort bore fruit. We did everything by ourselves,
We baked bread using flour made from Nishino Hikari which we grew.  We baked, sold,and served the customers .
Bakery coffe Kaze is locatied in a local area, most residents are farmers, and connection of the neighborhood  is very strong.  At first, people had prejudice. I visited each and every family and tried to make them understand our aim of Bakery Caffe Kaze. They gradually understood and accepted us.

7) Facing the limits after 10 years and the necessity of public help
Since Bakery Caffe Kaze opened, everything  was managed without public support.
Thanks to the help of local people and customers, we could run the Bakery Caffe Kaze.
We always tried to bake the best bread with the best quality materials. We did not want to use the fact that bread is baked by the handicapped people as an excuse.
We could run Bakery Caffe without public support. We worked hard with only two hours sleep at night, and got the minimum wage for running the bakery Kaffe. We did everything we could do.
Finally, we had to ask for public support at the local city office. We had reached the limit running Bakery Caffe. I visited city office many times to ask for the public support for the people who don’t have a place to belong.
However, there was a high wall between city office and us, the administrative law was too strict for us to overcome. One city officer told me that you are just a Bakery.
He also advised me that there are still a lot of vacancies in the places for handicapped people. But actually there are a lot of handicapped people who were not able to belong to any of those places. I told him they needed to choose a place to suit for them. Actually there are a lot of people in the shade of public support. That is the reality. I strongly insisted on that point. Gradually city office admitted our daily effort in Bakery Caffe Kaze, how handicapped people were making great efforts to run Bakery Caffe Kaze. At last We could get the city support in 2011. At last I could hire staffs.

8)Fujieda City Regional life Support Center
This place is the workshop for the people who can’t work in Bakery Caffe Kaze.
I reformed my own house and handicapped people spend the days doing creative activities and light work. 30 people are registered. About 10 people use it every day.
Some of them just come and sleep all day and chat with the others  at lunch
time. But it was first step for them to associate with other people.

9)Group Home Green Wind
I constructed the Group Home Green Wind. That was my long dream.
There are eights private rooms, and residents are under care of the staff.
Staff help clean rooms and cook dinner every day. I used my own money for the construction. But this time I already got the city to support us, and city office supported this construction.

Ryo does not act violently any more. He has own place and friends. Gradually he regained his memory. He never even slightly loses his temper. When I mentioned how he acted violently, he laughed and said he was still a child at that time.  He likes English and studies English Grammar by PC by himself. He writes short stories in English.  He also likes karaoke and goes to karaoke shop alone to sing songs .He spends long hours singing songs with his companions.
These past 20 years have been very long. First I was involved in this work for Ryo. I had to do something for Ryo. But during the process, my origin to do this work changed to anger at the administration. I am still fighting against prejudice and negligence of handicapped people. I am fighting with the administration on behalf of handicapped people. My friends often wonder how I can act like this without crying.
Actually I never cried even when I was told  by doctors that there was a 99.9% chance Ryo could not survive. I really never gave up his surviving. The sentence of 99.9% impossibility of surviving gave me the energy to make him survive. I did not accept this sentence seriously, I only thought he can survive, and I did everything what I could.
I believe my next dream will come true, too. That is the progress convincing the administration dealing with handicapped people to make them aware what being handicapped really is, and what they have to do for handicapped as administration without prejudice.

Above I have written my struggle for establishing Bakery Caffe Wind, Group Home Green Wind, and Regional life support Center NPO. I really want to know about the welfare in the world for cases like Ryo’s.; how administration is facing them in the world. What kind of organizations and institutions exist.
I would appreciate it if someone in the world who is involved in this field could send me some information. Also I want to let the people know my struggle as it is written above.


NPO法人 風      理事長   岸  俊子