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A Cry is Sounded at the Asian Conference on Mental Retardation and Self-Advocate Activities in Japan(October.2003)

Written by Kaoru Suzuki, Supporter, Self-advocacy Group "Yuai-kai," Tokyo Parents' Association for Intellectual Disabilities and translated by Japanese Society for Rehabilitation of Persons with Disabilities.
photo of panelists at a talk

From August 20th to 25th 2003, the 16th Asian Conference on Mental Retardation (ACMR) was held in Tsukuba City, Ibaraki Prefecture (Japan). In the past, this conference was a crucible for the introduction and discussion of research and practices related to medical science, welfare, labor, and education for people with intellectual disabilities in the Asia area primarily.

Previously people with intellectual disabilities were not involved in all of the related discussions, so in this ACMR, a self-advocate program was prepared as the first step to enable everyone to listen to the opinions of, and converse with people with intellectual disabilities. In addition, Vice President of Inclusion International, Mr. Robert Martin was invited to give a lecture.

First, let us identify the importance and aim of the self-advocate program. Until very recently, people with intellectual disabilities had been considered unable to get involved in decision-making processes (care staff, parents or administrators made daily decisions related to their welfare). Recently increased awareness of the opinions of people with intellectual disabilities has become prevalent in Japanese social welfare, and as a result of self-advocate activities and the effort of supporters, an attempt has been made to include their opinions, even in considering government policy. During this ACMR, it was aimed to demonstrate that now a cry has been sounded, self-advocates in Japan are clearly able to involve themselves.

Encouraging activities started in 1991 when a Self-Advocate Section Meeting was held during the National Assembly of Inclusion Japan. The year before, 5 self-advocate delegates attended the World Congress of Inclusion Internationa held in Paris. They were deeply moved by the words of a Swedish delegate, "Why do you leave everything to your parents?" He said, "They are talking about you and your life. From now on you should also get involved in the discussions." The delegates absorbed and introduced the idea to others, and their stance is expected to make an impact on people in other Asian countries eventually.

On the afternoon of August 23rd, the Self-advocate Program was held containinga symposium on three topics: 1.) Daily life 2.) Self-advocate activities 3.) Possible difficulties in integration related to intellectual disabilities. A spokesperson from Tokyo Yuai-kai chaired the meeting, while panelists from Taiwan, Singapore, Thailand and Hokkaido, Japan were present.

Descriptions of life in welfare facilities were notable amongst the discussions, as well descriptions of the struggles that disabled people encounter in their efforts to communicate. One of the Japanese audience members commented, "I have been in a welfare facility since my childhood, because it is more convenient for other people to have me there." Mr. Robert Martin related his own experiences and raised the question as to why disabled peoples lives and the life of people without disabilities differed so much, and insisted that "we would like to live in our local community; live a real life as real human beings." There was also a talk on bullying; a Japanese panelist talked about the sad experiences of not being able to consult others about the problems she had faced. A Thai panelist offered the consoling thought that "people who bully will have to pay for it someday in the future."

Despite different nationalities, everyone shared similar dreams such as the desire to work or to start families and have children. An exchange party followed, featuring attractions from three countries (including Japan), and the participants enjoyed drum music and dancing.

photo of conference participants dressed in Happi( Japanese traditional jacket )

Lastly, a little about the present situation of self-advocate activities in Japan: They are defined as the "group activities of people with intellectual disabilities who have the right to make their own decisions." According to Inclusion Japan, there are currently about 150 groups of self-advocates in Japan. Activities are diverse, including recreational and educational events such as bowling, karaoke and one-day sightseeing trips, cooking or PC classes, as well as studying activities and administrative negotiations where they learn about social welfare systems and their rights, or have meetings with administrative agents. Thus people with intellectual disabilities work with colleagues in their own way, are able to think about the relationship between themselves and society, and can start the integration process. The number of members and the structure of self-advocate groups differ widely but a group called "People First" is preparing to establish a national organization.

Since the initial activities, Government has supported the idea of a council to promote ideas and involve the disabled as members. Though such cases are still quite uncommon, on the national level people with intellectual disabilities have some opportunities to express their opinions in the process of making a "new fundamental plans for persons with disabilities"(governmental plans) . They have opportunities to talk at the "Investigating Committee on Local Life Support for People (Children) with Disabilities", which is currently being held. For the last 3 or 4 years an annual meeting between the representatives of the self-advocates and the Director of Welfare Division for Persons with Disabilities in Ministry of Health, Labor and Welfare is held as well.

photo of the participants and Mr. Robert Martin( Second person from the right)

Japanese self-advocates are influenced by the activities of people with intellectual disabilities in Europe and the USA, and always aim for involvement whenever they have an opportunity to talk. Two requests are emphasized: one is to ask people to listen to their opinions, and the other is to welcome the involvement of representatives in policy related discussions. From the instigation of these steps, it is expected that ACMR, which is to be held again in two years, will become a focal point for the discussion on supporting people with intellectual disabilities in supportive, progressive, and integrative ways.

Compiled and translated by the Japanese Society for Rehabilitation of People with Disabilities (JSRPD)