Masako Kitaura
Chair, Nationwide Association for Children (Persons)with Severe Physical and Intellectual Disabilities

My second son’s disabilities, and my meeting with Dr. Teiju Kobayashi

I moved out of Tokyo for the first time in 1941 to live in Fukuoka due to my husband’s job. My second son, who was born in 1946, developed postvaccinal encephalitis caused by his smallpox vaccination when he was 7 months old, leaving him severely disabled with paralysis of the right side of his body and difficulty in speaking.

After 18 years in Fukuoka, filled with various encounters and occurrences and days of joy, suffering, and longing, our family returned to Tokyo in 1959. At that time, we were able to be seen by Dr Teiju Kobayashi, who went on to found the Shimada Ryoiku [“therapeutic education”] Medical Center for Challenged Children (hereinafter, “the Shimada Ryoiku Medical Center”). Thanks to the medicine prescribed by Dr. Kobayashi, my son’s convulsions became less severe, he became more expressive, and he later gradually started to enjoy music and to play with toys.

I attended the monthly “get-togethers for parents” organized by Dr. Kobayashi. One day, he said, “I’m thinking of building a facility for children like these”, and showed us the architectural plans for the Shimada Ryoiku Medical Center. We parents, whose watchword at the time was “When I die, I will take my child with me”, were extremely happy. Dr. Kobayashi went on to say, “It’s absolutely impossible to run a facility like this one without support from the national government. I will petition the government, and so I want you to come with me.”

The first ever national government budget, and moving towards the launch of the Nationwide Association for Children (Persons) with Severe Physical and Intellectual Disabilities

This was an era in which it was said that “We cannot spend the country’s money on people who are of no use.” However, Diet member Masami Tanaka listened to what Dr. Kobayashi had to say, and replied, “OK! Let’s go to see the Minister of Health and Welfare”. In January 1961, he took us to the Minister of Health and Welfare and to various other places in order to appeal to them. These efforts paid off, and a budget of 4 million yen was approved to commission research into therapeutic education for children with severe physical and intellectual disabilities. This was the first national budget for children with severe physical and intellectual disabilities (hereinafter, “severely disabled children”). I will never forget our joy at that time.

The Shimada Ryoiku Medical Center was established in May 1961, and we were overjoyed that our dreams had come true. However, in 1963, the Permanent Vice-minister of Health and Welfare issued an announcement saying, “The Shimada Ryoiku Medical Center was established under the Child Welfare Act. Therefore, people over 18 years old cannot be admitted.” We were shocked and discouraged, feeling that there was no choice but death for us, after all. Thereupon, Dr. Kobayashi told us, “Don’t say that; set up a parents’ association.” We got together with experts and talked earnestly about how we could set one up.

The origins of the Association

An opinion expressed at that time was, “It is impossible for parents to look after severely disabled children on our own. We cannot look after them without the help of experts and society.” For this reason, we chose to include “look after” in our Association’s name, rather than calling it a “parents’ association”, to express our stance of looking after these children within a context of compassion from society. This is how the Nationwide Association for Children (Persons) with Severe Physical and Intellectual Disabilities (hereinafter, “the Association”) came to be launched on 13 June, 1964. The reason why we used the words “Children (Persons)” was to convey our strong desire that these people not be forgotten after reaching 18 years old.

Chief Cabinet Secretary Tomisaburo Hashimoto, who attended the Association’s second national conference the following year, 1965, on behalf of Prime Minister Eisaku Sato, listened there to the situations of our children and our pleas as parents. He dashed the congratulatory speech which had been prepared for him against the podium, declaring, “I cannot read this congratulatory speech with all its platitudes! There have been no politicians with the heart to accept your sorrows as such. From now on, the nation will take care of you.” There were various troubles from then until the first beds for severely disabled children were installed in the National Sanitoria in 1966. A revision of the Child Welfare Act in 1967 made it possible for people over 18 to be admitted even to facilities which were established under this Act (establishing consistency between children and adults).

The “Castle for Severely Disabled Children”, and our “Three Principles” and “Parents’ Charter”

As for measures to support those living at home, Junzaburo Ban and Hisaya Morishige of Ayumi no Hako , along with other celebrities, began fundraising activities for severely disabled children, asking that the 2.6 million yen raised through the first campaign be used for “the severely disabled children and adults living at home who are left behind by society.” Using this, the Ryoiku Medical Advice Centre for Children with Severe Physical and Intellectual Disabilities (now the Kitaura Memorial Hall in Mijuku, Setagaya Ward, Tokyo) opened in April 1969. We call this facility the “Castle for Severely Disabled Children”, and it is our place of emotional support.

In the midst of these various experiences, I strongly felt that we must draw up principles for those involved with severely disabled children. The Association’s “Three Principles” came out of this realization. These are 1) Under no circumstances must we fight. Vulnerable people have no place to live in the midst of conflict; 2) Whatever principles and opinions individual parents may have, those who participate in the movement for severely disabled children are to put aside partisan differences; 3) Protect absolutely all the most vulnerable people. We later established the “Parents’ Charter” at the eighteenth national conference in June 1981, as policy measures gradually became more comprehensive, in order to guard against an attitude of taking the welfare we received for granted and avoiding parental responsibilities.

What does independence mean for severely disabled children?

The Services and Supports for Persons with Disabilities Act was passed in 2005 (and went into force in 2006). There was an explanation of “independence” at a meeting attended by representatives of the Ministry of Health, Labour and Welfare and seven organisations at that time, but this came across as “Independence means undergoing rehabilitation for your disability, returning to society, and becoming able to pay taxes.” I said then, “So what is independence for severely disabled children? Severely disabled children do not produce money. However, they smile when they sense someone’s love, and help to heal people’s minds, such as those of junior high school students who are refusing to go to school. And they extend their residual capacities and grow. There are many people in society who feel joyful and moved by this. The ability to change people’s hearts is these children’s ‘productivity’.”

As all this was taking place, our children developed more and severer conditions year upon year, with an increase in the number of children requiring intensive medical care such as ventilators around the clock. Medical care at special needs schools at the time was also a big issue. We at the Association acted as a bridge between the Ministry of Health, Labour and Welfare and the Ministry of Education, Culture, Sports, Science and Technology, requesting that medical care be available at special needs schools, working hard to have nurses assigned to schools and teachers carry out care such as the suction of phlegm.

Submission of over 1.2 million signatures

In 2009, “arguments for deinstitutionalization” were expressed at a Cabinet committee meeting. These said, “Residential institutions are a violation of human rights. Don’t build institutions!", "Disabled people should be transitioned into local communities”, “We’ll live in our local communities!”, and so on. At that time, I said, “The lives of severely disabled children are protected by medical care. Moreover, medical care also exists as a part of therapeutic education to enrich their lives, finally making it possible for these children to live their daily lives. Residential institutions are essential for severely disabled children.” I felt alarmed by this argument for deinstitutionalization, and the Association immediately began collecting signatures for a petition in order to deepen understanding nationwide. Thanks to the support we received, over 1.2 million people signed the petition, which we submitted to the Cabinet, stressing the need for residential institutions once again.

The Association’s aims

The current Association is made up of two organisations. One is a nationwide organisation with parents at its core. There are branches in 47 prefectures at present, seeking the improvement of welfare, medical, and educational policies for severely disabled children and making requests to national and local governments. At the same time, the organisation hosts the national conference and various sub-groups and workshops, and is entering the 58th year since its foundation. The other organisation is a social welfare corporation. As a business entity, it runs several residential and day facilities and workshops for severely disabled children in Tokyo and Tochigi Prefecture, carrying out a variety of social welfare work including welfare, medical care, and consultation. The headquarters of both organisations are located in the Kitaura Memorial Hall (Mijuku, Setagaya Ward, Tokyo).

There are too many instances of disregard for life in today’s world. If we can allow as many people as possible to see severely disabled children making every effort to live their lives to the fullest, creating a great multitude of people who value life, are equipped with tenderness and thoughtfulness, and are trying to make society more compassionate, I am sure that this would strike a chord and become a powerful force to change society.