13-18 November 1997

Historical Perspective and Development of Independent Living Movement in Japan
By Mr. Shoji NAKANISHI, Human Care Association

In the 1960's Civil Rights Movement of the African Americans heatedly spread all over the United States. As one of the minority groups people with disabilities also hoped to get the Civil Rights. Although it was not realized, the disability movement had been strongly influenced with the Civil Rights Act of 1964.

In 1972, Ed Robert, who was using a wheelchair equipped with a respirator on the back because of his polio, was about to graduate from the University of California at Berkeley. He spent his college life hiring attendants to help with personal care in an accessible residence, getting up 24-hour wheelchair repair, peer counseling, and other necessary services. However, these services could not be available after his graduation any more.

Ed and his disabled friends discussed what their future would be and concluded to establish Independent Living Center in the community with the cooperation of Ed's family and friends. It was the beginning of Independent Living Movement in the United States. The four key concepts of IL Center are itemized as follows:
1. People with disabilities should live in their communities instead of staying at institutions.
2. People with disabilities are neither the patients to be cared, the children to be protected, nor God to worshipped.
3. People with disabilities themselves can identify their necessary assistance and manage it.
4. People with disabilities are the victims of social prejudice rather than the victims of disabilities.

Based on the concept of traditional rehabilitation individuals with disabilities were treated as the defective models who were expected to reach to non-disabled bodies. For instance, the rehabilitation forced disabled people to get dressed by themselves without any assistance and it was positively evaluated. On the other hand, Independent Living Philosophy declared that asking for help was not a shame at all and that it never harm disabled people's self-reliance. It evaluated making own choice and decision was important. Rehabilitation should be limited to the medical treatment for a certain period of time and it must not control the life of a person with disability for through life long.

Berkeley Independent Living Center was followed by Houston IL Center in 1972 and Boston IL Center in 1974. This movement rapidly developed nationwide. Notably the Amendment of Rehabilitation Act in 1978, which was the victory of the Americans with disabilities made it possible for IL center to obtain federal funds. In addition, Gorben DeJong, a young American sociologist, announced his new thesis titled as "The Movement for Independent Living (1979)" and evaluated the positive effect of IL centers academically and theoretically comparing with the traditional rehabilitation.

A. Qualifications of IL Centers in the US

In order to receive federal grants, IL centers are required to satisfy following qualifications under the Amendment of Rehabilitation Act of 1978:
1. More than 51% of the directors must be people with disabilities.
2. At least one of the top executives who would make important decision should be persons with disabilities.
3. At least one of the staff should be persons with disability.
4. IL Center must give essential services as follows:
(1) Information and referral (attendant, housing, etc)
(2) Peer counseling (by disabled peers)
(3) Independent Living Program (including independent living skills)
(4) Individual advocacy

Besides these basic services, other services are also encouraged to give. In addition, IL centers must give services to people with any types of disabilities without dealing with one particular disability.

B. History of IL Centers in Japan

In Japan, Independent Living Movement was introduced by Ed Roberts in 1981, the International Disabled People's Year. His introduction was followed by Judy Heuman and other disabled advocates who toured through Japan to give the philosophy of independent living to people with disabilities. Consequently these lectures made an enthusiastic argument occurred everywhere they visited. Although they talked about the philosophy itself, the services at IL centers were not introduced yet.

It is true that Blue Grass Movement (Aoi-shiba) by people with Cerebral Palsy in Japan started in the 1960's and they fought against discrimination protesting "Disability is one of the characters of a person". This philosophy was very close to the Independent Living Philosophy.

In 1980 Henry Enns, who lived in Ontario, Canada, started unifying grassroots disabled people's groups aiming to get out of the rehabilitation which had forced disabled individuals to be protected and controlled for a long time. Globally speaking, people with disabilities started moving toward "independence".

The first Japanese IL center was established in Hachioji, Tokyo, in June 1986. It was Human Care Association. Before Human Care Association was organized, the Japanese disability movement had been somewhat slanted to protest, demand, and advocacy. Persons with disabilities had not been aware of providing services by themselves. Since the beginning of Human Care Association the disabled staff definitely realized to become service providers instead of service recipients.

The service recipients by Human Care Association were people with any types pf disabilities including aged people. One of the objectives is to be a core of social reformation beyond independent living movement. Since then, the Japanese disability movement was sometimes shattered by groups of each disability (cerebral palsy, visual disability, etc) and was clustered into local community groups or small circles. Human Care Association was, however, an organization of qualified individuals of different types of disabilities and areas. In order to pursue the objectives these staff were intentionally gathered and this was the unprecedented through the history of the disability movement in Japan.

C. Services of IL Centers in Japan (What Human Care Association Provides)

As a model of IL centers in Japan, Human Care Association made the principle that Independent Living Program and Attendant Service were both inevitable and essential. It was because many of the members who founded Human Care Association had been involved into the management of a severely disabled group named "Wakakoma-no-ie". It was one of the two disabled people's groups in the 1970's. Therefore, the staff knew quite well about the severely disabled people's situation and what they had hoped. Many of them had been home-bounded or institutionalized since early days of their life and that they had few social experience.

If IL center provide only attendant service, clients would tend to be dependent on attendants and would just keep living alone without knowing the importance of making choice and decision of their own. On the other hand, if only Independent Living Program is provided by IL centers, clients would be knowledgeable about independent skills and philosophy. However, they will come to know nothing wold happen and change without attendant service system in both communities. That is why Human Care Association started both services at the same time.

1. Independent Living Program

Independent Living Program was started at Wakakoma for the human relationship, how to solve own problems and claims, how to manage their money, and other practical skills for independent living by the senior individuals who had already realized independent living. Wakakoma-no-ie ws so to speak the place to convey "disability culture" to the next generation.

The basic style of Independent Living Program established and tried at Wakakoma ?no-ie for three years was succeeded to Human Care Association and published as a textbook titled "Manual for Independent Living Program in 1989. This program is now adopted by other local IL centers in Japan and the program is given in class style there.

In the United States various types of Independent Living Program have been experimented. In Japan, however, the program should be based o our Japanese culture was necessary. For example, it was quite difficult to establish the method to let disabled people know the importance of assertiveness and to persuade non-disabled individuals. The Independent Living Program which was developed in Japan could be shared with disabled peers in Asian countries where the same kind of movement and problems have occurred. In 1994, Human Care Association published "Independent Living Skill Training Manual" in English version as well.

2. Peer Counseling

To acquire independent living skills takes time and is not easy process. However, it is more difficult for people with disabilities to accept what they are and to be psychologically independent . Since they were very young, people around them used to say "You cant do that because you are disabled", "Never imagine to get married", or "Don't go out because you might be a big trouble for others". These discouraging words had damaged their confidence and dignity for long time. Them, the disabled persons started feeling that they were weak and worthless. Therefore, once they were possessed by this thinking, counseling is critically necessary for them to regain their self-esteem. In this counseling a counselor must be a peer with disability and both client and a counselor should keep equal relationship.

The first step for independent living is to open up mind and to be free from the past trauma. In Peer Counseling disability is regarded as one of the characters of a person. Being disabled is not malicious status and it is social barriers and discrimination that make disabled individuals feel negative. If these barriers are removed, people with disabilities would not be "disabled" anymore.

The word of "peer" was introduced in Alcoholic Anonymous organizations in the United States in the 19707s. In Japan people with disabilities started to use as Peer Counseling. In Peer Counseling the equal relationship between counselor and client was applied under the influence of co-counseling method. This was recommended by one of the staff of Human Care Association who learned co-counseling. Some IL centers in the United States also provide the same counseling program based on co-counseling.

The people with disabilities in Japan aimed and tried to let society understand that it was disabled people that could be the best supporter for the disabled peers to be independent. One of the important schemes, therefore, was to establish the license system of "peer counselor". The word of "peer counselor" was intentionally and strongly appealed. Fortunately, it spread among media and social services. Then, the National Government adopted the concept of "peer counselor" in the programs for the people with developmental disabilities.

3. Attendant Referral Service

Attendant referral service will be provided on commercial basis. The fare ranges between 800 yen and 1,000 yen per hour. Clients will pay the fare directly to attendants for their service. It means clients are supposed to be employers. Traditional social services were given by the government. And, the services through volunteers as care givers could not help build upper-lower relationship between volunteers and disabled individuals. In order to break this situation, people with disabilities developed Attendant Referral Service on commercial basis.

This service is performed based on the needs of clients. Clients are supposed to be aged people, pregnant women, people with physical, hearing, visual, psychiatric, developmental or internal disabilities including temporary disabled persons with broken bones. This means Attendant Service will cover all the people who needs assistance and society began to regard what IL centers provide was worthwhile and contributing to the communities.

The content of Attendant Referral Service is up to what attendants can or hopes to do. It is the obligation for IL centers to find out the people with special abilities which would match client's needs in the communities. The typical and common services available are the help at bathrooms, bathing, guide help when going out, and so on. Service time is 24-hours including staying overnight at clients' residence. The 380 registered attendants are composed of 50% of house workers, 30% of students, and 20% of freelance workers and retired people. Generally speaking, students work at night, retired people in early morning, and house workers in the day time.

When a client requests for Attendant Referral Service, a coordinator at an IL center will visit the client and interview specifying what he/she needs. In addition, the coordinator will give the information on public attendant service, housing referral and modification, available self-help tools and devices, so that the client could achieve independent living making the best use of social resources. Then, the attendant who matches the client's need best will be selected and introduced. Before deciding the attendant finally, the client has the right to turn down the recommended because Attendant referral Service should be based on self-determination of clients.

In case a client wants to go out on the day when it is extremely cold, an attendant can not have the right to stop it and should support his/her going out. No matter what happens, the whole responsibility is on the client. To maintain free will is the origin of independent living and it will involves own responsibility of disabled people. Although institutions seem to be safe to stay, freedom there is obviously restricted and the control and protection over the people with disabilities exist.

D.History of Japanese Council of Independent Living Centers

Since 1989 new IL centers have been established nationwide. Some of them modeled after Human Care Association and some staff who once learned and worked at Human Care Association started IL centers. Machida Human Network, Hands Setagaya, and CIL Tachikawa were established as the IL centers where basis services are available. Sapporo Ichigokai, AJU Jiritsuno-ie, Shizuoka Independent Living Center for Disabled People, and other organizations which had already existed also started the services such as Independent Living Program, Attendant Referral Service, and Peer Counseling.

In order to share skills and information, the Japan Council of Independent Living Centers (IL) was organized in November 22, 1991 after the preparatory meeting for establishment in the late of 1990. The agreement of JIL which mostly follows that of the National Council on Independent Living (NCIL) is as follows:
1. More than half of the members of decision-making process should be people with disabilities.
2. The responsible persons of the decision-making process and the decision-enforcing process should be both disabled.
3. IL centers must provide their services to the people with any kinds and types of disabilities.
4. At IL centers following services should be available including information referral and disability rights advocacy as the basic services:
(1) Independent Living Program
(2) Peer Counseling
(3) Attendant Referral Service
(4) Housing Referral and Modification

The IL Centers where two services out of four are provided are admitted as members and the IL centers where more than one service are provided are designated as associate members. The groups and/or organizations who are supposed to start services to become IL centers are appointed as future members. JIL has five sub-committees as follows:
1. Sub-committee for Independent Living Program
2. Sub-committee for Peer Counseling
3. Sub-committee for Attendant Referral Service
4. Sub-committee for Disability Rights Advocacy

Each sub-committee hold national meeting approximately every other month.. For new IL centers each sub-committee has prepared the Guide Manual for the management.

The seminar for the presidents and/or directors of IL centers is held annually in order to develop the management skills of IL centers and to make them capable of satisfying social needs. In October of 1995, 50 IL centers in Japan are registered as members of JIL and 16 IL centers of 50 are located in Tokyo. Approximately 10 IL centers are newly established every year.

Unfortunately the budget of each IL centers is insufficient. Although Tokyo Metropolitan Government started funding 3/4 of maximum 15,000,000 yen for Attendant Service and Independent Living Program through Community Welfare Foundation, it is not still definitely settled as the officially governmental funding. It is the first achievement that Fukushima Prefectural Government started official funding for the local IL center in 1995 although the amount of the funding is still small as 1/2 of 3,000,000 yen.

E. What IL centers are Confronting Now

IL centers in Japan have developed for 9 years and as a service providing organization for disabled individuals IL centers have acquired the positive acceptance among communities and governments. Most of the officials in both national and local governments know what IL centers are.

The concept of Independent Living is completely different from the traditional social welfare such as institutionalization. Therefore, as IL centers develop and provide community services, the identity of the staff of existing institutions will become unstable. For the staff who try to meet clients' needs at nursery homes or disabled people's institutions, it is natural to find the philosophy and services of IL centers idea. We believe that the deep struggle among governments and institutions exists because they could not enforce what they think is reasonable and idea.

The most important objective of IL centers nos is to convert "traditional social welfare services" to "social services based on clients' needs". Present public services are limited to the aged people above 65 or classified to 6 grades according to the severity of disabilities, which allows segregation and overprotection.

On the other hand, social services based on clients' needs enable people with disabilities have what they want without any worry or hesitation. These are the services that IL centers should provide.

In 1996, IL centers finally made the national government legislate the system of IL centers. Next objective is to the Japanese social foundation system itself reformed because currently it is very complicated and difficult to establish authorized foundation to get government's grant and fund regularly. The National Congress have been discussing on the new law for Non-profit Organization, which are eager to have.

It is of course that IL center should be getting more efficient and supportive. JIL and TIL (Tokyo Council on Independent Living) are responsible for enforcing this objective.

Lastly, it is necessary to make it clear that IL centers do not deny rehabilitation specialists or their specialties at all. We sincerely hope that the specialists could be our partners who share the philosophy that social services must be developed giving the highest priority to what people with disabilities need.

CHART 1 Comparison of Traditional Rehabilitation and Independent Living

From "Resource Book of Training Course for Leaders of Persons with Disabilities 1997"

Japanese Society for Rehabilitation of Disabled Persons