Shoji Nakanish is unable to attend
28 November 2008:
Independent Living Movements in Asia: Its Achievements and Future
29 November 2008:
Development of Independent Living in Asia
June 1986: Establishment of Human Care Association, 1st independent living center in Japan
1986 - 98: Secretary general of Human Care Association
1998 - present: President of Human Care Association
1990 - 98: Chairperson, Japan National Assembly of Disabled Peoples' International (DPI-Japan)
1991 - 95: Secretary general of Japan Council on Independent Living Center (JIL)
1994 - present: Asia-Pacific Regional Council Member / World Council Member of Disabled Peoples' International (DPI)
1995 - 98: Chairperson, Executive Committee for Support of the Disabled Affected by Hanshin Earthquake
1998-2000: Member of the Committee on Care Management for Disabled Persons, Ministry of Health and Welfare
1998 - present: Chairperson of Center for Independent Living, Hino.
2001 - present: Japanese Representative of Korea-Japan Independent Living Fund
2001 - present: Chairperson of Japan Council on Independent Living Center (JIL)
2002 - present: Chairperson of DPI Asia-Pacific Regional Council
2002 - present: Treasurer of DPI World Council
2003 - 2004: Member of the Committee for Home Care Service, Ministry of Health and Labor
2006 - Present: Member of the Committee for Welfare Plan for Person with Disability, Tokyo Metropolitan Government
2006 - Present: Member of the Committee for Welfare Plan for Person with Disability, Hachioji-city
1. What we have achieved
(1) Shift from medical to social model of disability
The first independent living center was established in Asia 22 years ago. It was the era when charity based welfare was the pinnacle of its popularity, and society treated persons with disability as if patients or children. Under such situation, society did not think persons with disability live independently in community. Even many persons with disability and welfare-related researchers hardly believed possibility of independent living in Asia.
The introduction of independent living movement with social model of disability, however, changed this situation. Persons with disability began to say that they did not need to do everything by themselves and could manage independent living even though they asked help to personal assistants.
Medical experts and staffs of institutions ashamed what they had done to persons with physical disability and shifted their focus to the fields of persons with intellectual or psychiatric disability. In these days, however, first persons in these fields begin to speak up their independent living and scare medical-model-oriented experts and staffs.
(2) Participation of persons with disability into policy-making process
Persons with disability in Japan participate into policy-making processes on disability-related issues at national, prefecture and city levels. With ample data and knowledge from their working fields, persons with disability from independent living centers take initiative at various committees for policy-making. Due to provision of cross-disability services, including for intellectual and psychiatric disability, independent living centers can speak opinions for whole disability fields.
In Korea, Thailand and Philippines, participation of persons with disability into policy-making processes is progressing. Especially, many persons with disability are appointed as committee members of governments. In Malaysia, Nepal and Pakistan, participation into policy-making has not been enough yet due to their countries’ political conditions.
(3) Improvement of accessibility to transportations
In several Asian countries, accessibility to transportations has been dramatically improved in the last 20 years. Action by severely disabled persons contributed to this improvement: They came out to society by motorized wheel chairs and tried to you use trains and buses. Provision of personal assistance service by independent living centers of course supported their action.
Now, in Japan and Korea, persons with disability widely use motorized wheel chair, train and bus for their mobility. Accessibility laws were established in both countries after strong social movements. In Thailand and Malaysia, subway stations are equipped with platform screen doors.
(4) Realization of 24-hour personal assistance service
Independent living centers have advocated providing necessary services to persons who have needs, and gained wide recognition. Public administrations are no longer able to ignore the power of independent living movement.
In Japan and Korea, 24-hour personal assistance service has been realized substantively though there is regional unevenness reflecting power-relations between local municipals and IL centers in regions. Though national governments of these countries have not yet guaranteed 24-hour service financially, laws states no limitations in service hours.
Public support for personal assistance service for persons with intellectual disability is still limited. Consumers who need long-hour service have to demand to public administration.
(5) Living of persons with severe disability in community has been realized
For living of severely disabled persons in community, peer-counseling and independent living program by independent living center and enough personal assistance service are indispensable. In addition, conditions, such as, system of public pension and income security, housing and accessible public transportations, and enough number of personal assistants, must be fulfilled.
These conditions have not realized yet in developing countries. Hence, it was widely considered establishment of IL centers is difficult.
We can see this issue, however, from different point of view. Employment and dispatch of personal assistants is less costly than construction of expensive residential institutions. In addition, if there are IL centers that focus to services in community, their presence can strongly influence policy-making process in developing countries for constructing social service systems. From such point of view, we can say IL center is possible and also preferable for developing countries.
Success of IL centers in Pakistan and Nepal gives strong impact to other Asian countries. We have high expectation of realization of welfare system for home-based services in these countries.
(6) National policy changed its focus from institutions to community living
Japanese government shifted the focus of national policy from institution to community living. This change had never occurred without success of independent living centers. In Pakistan, government is determining to stop the construction plan of one of eight institutions and distribute budget for community services including independent living centers.
Political power of management side of institutions is still strong. If we once establish IL center, however, they will lose the reason and power to build more number of institutions.
(7) Many persons with disability are empowered
Persons with disability in countries where philosophy of independent living movement is widely known are very active. They recognize that social policies are not based upon their needs and commit to strong social movements.
Both international support organizations and domestic foundations are friendly to social movements by persons with disability. ILO and WHO support IL centers in implicit and explicit ways. International conferences on disability issues cannot neglect invitation of persons from IL centers.
It is IL movement that empowers persons with disability. We organize IL center as social movement body and demand governments to reflect our voices into policies. Governments have to change their charity-based mentality and social policies. They are no longer able to neglect voices from empowered severely disabled persons.
2. Challenge to us
(1) Reduction of welfare budget
Neo-liberal economic policies cause reduction of budget for welfare services. Asian countries are not exceptions. In Japan, reduction of budget has already exceeded our tolerance. We are now recommending increase public support for unit price of personal assistance service and staff payroll. There is high possibility of reconstruction of welfare budget.
In Asia, many developing countries do not have social services and, hence, have to make effort to establish service system from now on. In China and India, with their rapid economic developments, people began to discuss the issue of care for elderly persons. I hope personal assistance services will boom in several Asian countries within a decade. However, present economic condition stays as obstacle to realization of this expectation.II. Future of Independent Living Movement
1. Severely disabled persons change the world
I wrote a book Sovereignty of Tojisha (First Person) with sociologist Chizuko Ueno. In this book, we define Tojisha as those who have to have needs due to the lack of social understanding. Individuals become Tojisha when they first time recognize their needs.
At the situation in which severely disabled persons in developing countries have to ask family members to do something with hesitation, they have not recognized that the lack of personal assistance is attributed to the lack of welfare service by national government. They are not yet Tojisha at this moment. They finally become Tojisha of needs when they recognize that their difficulty from the lack of personal assistance is attributed to the lack of enough accommodation from the society to persons with disability.
One of roles of IL center is assist severely disabled persons to aware themselves as Tojisha and have recognition that nothing changes in society without their voices. Even in developing countries, severely disabled persons can easily change their countries once they have recognition.
2. Integration with senior citizen’s movements and establishment of users union.
Independent living movement have advocated for the rights of persons with disability and achieved improvement of social services in certain degree. Improvement of services for persons with disability has not been a difficult task in the financial aspect due to relative small population of disabled persons.
Our next generation, however, is now facing to the issue of aging society. In many countries, it is estimated that population of elderly persons who need care will be ten times over than population of persons with disability. When this society comes, implicit understanding of IL centers -- better service for persons with disability than aged persons -- will fall apart.
In some developed countries, national governments have to change the orientation of state finance towards welfare society in order to uplift welfare service for elderly persons to the level of that of persons with disability. For this change, agreement at national level is necessary.
This agreement can be realized by establishing “users union” of welfare services. Elderly and disabled service users, their supporters and preliminary aged group (more than 50-years old) occupy 25% of population. Besides these groups, we call for participation into the union to population groups who have lower annual income than average by suggesting policy to reduce their medical burden. With political power of users union, we can shift the direction of national policy towards welfare-oriented.
Senior persons with disability who committed to IL movement should take initiative in the user union in order not for services for disabled persons being buried into those for elders.
I. Asian Development of Independent Living
1. Independent living center as the united body of social movement organization and service provider
As social movement organizations, independent living centers in Asia demand public administrations realization of needs of persons with disability such as personal assistance service and accessible transportations.
As service providers, they provide personal assistance service with commission from public administrations while supporting empowerment of persons with disabilities through services such as peer-counseling and independent living program.
As the united body of social movement organization and service provider, IL center employs personal assistants, office staffs and service coordinators by utilizing income from provision of services. Accompanying with PWDs, employees of the center also participate into demonstrations to governments for, such as, improvement of personal assistance service or improvement of accessibility of public transportations.
Responsible PWDs in social movement function of IL center also take in charge of management of service provision. In this management system, IL center tames financially powerful service provision function under social movement function and control provision of personal assistance service.
Human Care Association, the first IL center in Asia, established this management system. All IL centers in Asia adopted this system.
Strength of this system is improvement of policy recommendation capacity of IL centers. In Japan, 200 IL centers recommend policy on the use of 15% of disability-related government budget for personal assistance service. As demerit, however, this system requires staffs with disability use much of their energy for management of personal assistance service and reduce their commitment to their primary tasks such as supports for PWDs’ empowerment and participation into social movements.
Management of personal assistance service is especially tough and stressful work for severely disabled persons who have fewer experiences in business operation. This may cause of non-disabled staffs’ taking over of management and threat raison d’etre of IL center.
2. Severely-disabled-person-centered social movement
Severely disabled persons such as quadriplegic have various needs. Once they join, PWD organizations can indicate needs that reflect whole needs of society.
In developing countries, persons with relatively mild disabilities, such as, paraplegic with spine cord injury or amputation, have taken initiative of PWD organizations and focused mostly on job creation. Once severely disabled persons become the core of organizations, however, they will expand needs from organizations. Their needs cover, such as, disability pension, personal assistance service in community, medical care, accessible transportations and facilities, or arrangement of accessible education and employment. Effort of single IL center cannot realize these needs. Large social movement under collaboration of organizations is necessary to lobby governments.
3. Establishment of IL center in Japan with support from Japan council on independent living centers (JIL)
Some prefectures in Japan have not had IL center yet. To establish IL center in these prefectures, JIL took following strategy. At first, it had supports from local residents and looked for a few severely disabled persons who need personal assistance. JIL interviewed them and selected a person who was willing to join movement to support not only him/herself but also other PWDs. Selected person then sought for personal assistants and had training at model IL center in Tokyo to study philosophy of IL and knowledge to establish a center.
At the initial stage of his/her independent living in community, JIL paid for personal assistants and informed necessary arrangement for employment to establish IL center. Then, he/she negotiated with public administration for public support to personal assistance service. JIL continuously consulted to him/her for establishment of IL center with utilization of income from dispatch of personal assistants.
With this strategy, JIL successfully assisted the establishment of 70 IL centers in Japan from 2000 to 2003.
We expect PWD organizations in developing countries seek for severely disabled persons as the core member of IL center at first. PWD organization arranges conditions of independent living of a severely disabled person by looking for personal assistants and a house based upon his/her needs. It also seeks for financial supports from both private and public for rent and living expenses. The goal of this activity is the establishment of personal assistance service system with public support and acquisition of subsidies for operation of IL center.
Supporters will be very excited if they see the change of awareness of family and community members towards PWDs and shift of public administrations focus from institutions to community living.
II. Mechanisms and Patters in the Development of IL in Asia
1. Single support model
In Korea, we implemented support for establishment of independent living center in following process:
(1) At the time of RI Asia Bloc Conference in Seoul in 1997, I interviewed leaders from three disability-related organizations to seek for the partner for establishment of IL center. Organization for orthopedic disability – the largest one among three – still had institution-oriented stance and also controlled by parents of users. Organization for persons with cerebral palsy is managed by medical expert and would hardly be user-centered. Only Jengnip Center for Rehabilitation and Independence had PWD president and PWD-majority steering committee. This organization had also dispatched its staffs twice to IL centers in the United States.
After the interview, Jengnip Center was selected as the partner to establish first IL center in Korea.
(2) In 1998, Human Care Association and Jengnip Center organized the First Independent Living Seminar in Seoul. Human Care dispatched me and other staff as speakers of the seminar. Jengnip Center took in charge of public relations and gathered 300 participants. It also selected 20 PWD trainees for 5-day workshop which was held after the seminar.
This first IL seminar in Seoul gathered wide attention. Not only PWDs but also city officials and experts participated into the seminar and exposed to the concept of IL. In the seminar, I used role-play with a case of disabled couples whose parents did not understand their marriage. Participants could recognize significance of self-decision and IL center. Some of them were strongly moved by the seminar and burst into tears. After the seminar, 20 PWDs organized IL Center Study Group and held the meeting once in a month.
(3) Organizers of the seminar selected 2 trainees from 20 participants of the IL workshop in 1998. At the same year, IL center in Japan invited these trainees by preparing air-tickets and accommodation and organized IL training. They stayed in independent living experience room and enjoyed self-managed living.
(4) In 1999, some Korean PWDs prepared air-tickets by themselves and visited Human Care Association for peer-counseling workshop. Human Care prepared IL experience room and organized one-week workshop.
Since then, more than 10 persons have visited Japan from Korea to observe IL centers every year. Korean PWD organizations that planed to establish IL center also have invited Japanese PWDs as resource persons.
(5) In 2000, Jengnip Center finally decided to start IL center and informed to Japanese side. We, however, replied that if the Center would not find a severely disabled person who needed personal assistance we could not have continued our support. Then, members of Jengnip Center selected Mr. Chong Man-Hoon with disability from cerebral palsy and dispatched him to Japan for one-week independent living training. KBS, a public television in Korea, filmed his IL training and televised at prime time. Due to this TV program, IL movement gained nation wide attention.
In Japanese side, three IL centers established the fund for Korean IL and prepared house rent for IL center and expenses for 6-month use of personal assistance service.
After the establishment of IL center, several domestic funders, such as, Korean Red Cross, began to provide grant support for IL activities. Seoul city also started to subsidize 10 IL-related organizations in Seoul.
(6) In 2001 and 2002, many PWDs got injured due to accident of step-lifts equipped to subway stations. Three of them even died. PWD organizations protested to responsible authorities and organized demonstration. PWD leaders staged 4-week hunger strike. IL centers all over the world supported their action and sent authorities fax and mails of protest. One day before the last day of strike, Seoul city government and all subway companies finally agreed to equip elevators to all subway stations.
(7) In 2004, Korean government dispatched officials of welfare and labor ministry to Human Care Association for research of personal assistance service. 3 years later, in April 2007, Korean government established public support system for personal assistance service.
In this case of single support model, PWD organization in Korea and IL centers in Japan shared expenses and organized seminars and workshop in true partnership regardless of fund limitation. We successfully implemented model project to support independent living of severely disabled persons and built strong bond among PWDs in both countries. Our relationship is still developing in collaboration for demonstration and establishment of IL centers.
Some IL centers in Korea established sister organization relationships with those in Japan and exchange their junior staffs for training once in every year. They also organize education tours for city representatives and staffs of city office in Korea, and visit IL centers and progressive city offices in Japan to study welfare system and services for PWDs’ independent living. Recently, Yangcheon district office in Seoul city has organized IL support team and joined this tour to study support system for IL and participation of PWDs including those who have intellectual disability into policy-making system in local municipal.
2. Collaborative support model
In this model, IL centers collaborate with domestic and international development agencies and organizations to support IL in Asian developing countries. IL centers and their related persons disseminate concepts of IL to staffs of development agencies and lead IL oriented development projects. Here is an example from collaboration with JICA (Japan International Cooperation Agency).
JICA is taking up disability issues in its basic aid projects. To realize JICA’s commitment in the light of IL, there are approaches from several IL-related organizations. One of these organizations is Asia Disability Institution (ADI) organized by Yukiko Nakanishi for support of PWDs in Asia. ADI has organized study groups once in a month inviting Asian PWDs and young JICA experts, and arranged opportunities to disseminate concepts of IL and significance of PWD participation into development projects. As core staffs of JICA, these experts concern with the most of disability-related projects and promote PWDs’ participation and initiative.
Despite of recent popularity of “participatory” in the field of international development, it is still difficult for us to meet true PWD-led development projects. Project by APCD (Asia-Pacific Development Center on Disability) is one of such rare examples. APCD was established in Bangkok, Thailand, in 2002 under cooperation between JICA and Thai government. It is equipped with facilities of venues and accommodation for long-term training courses for 20 PWDs.
The first project of APCD was the promotion of independent living in Asia. The project organized programs for peer-counseling and management of IL center, and lasted 5 years. The project focused to the establishment of IL centers in Thailand at the first 3 years, and then expanded its reach to other Asian countries, such as, Pakistan, Philippines and Malaysia. PWD leaders from these countries stayed together for two weeks at APCD and received trainings on IL while exchanging information on their movements and fostering the sense of unity. All lectures were given by PWD resource persons. Some Thai trainees in the first 3 years of the project joined to some programs in the last 2 years as assistant resource persons.
IL leaders in Japan, including me, committed to the project as resource persons and took initiative in selection of trainees, program creation and provision of lectures. Regarding to the selection of trainees, staffs of APCD visited PWDs’ homes and interviewed one by one based upon our information. They checked whether candidates have will to operate independent living center and gave feedback to us to select trainees. Regarding to training programs, we drafted program contents and selected program lecturers. PWD-led lecture programs were implemented without modification.
Our initiative also changed recognition of donor organizations on PWD’s needs. For example, JICA, a major development agency in Japan and also a founder of APCD, had not had guideline to dispatch resource persons with severe disability even though some resource persons for APCD IL project needed two full-time personal assistants. However, the presence of severely disabled resource persons, and also negotiation with JICA via channel of ADI, had JICA changed to accept two personal assistants to resource persons with severe disability. It also recognized the necessity of transportation for PWDs and prepared vans with lift for resource persons and PWD trainees.
Programs successfully contributed to trainees’ capacity building on IL. Thai trainees established three IL centers in 2004. Participants from other countries also realized or are preparing establishment of centers.
Some of trainees of APCD programs had already had a few month IL trainings in Japan with fund from other donor organizations such as Dasukin Ainowa. In order to provide similar opportunity of further IL training, we negotiated APCD and prepared programs in Japan for APCD trainees who were estimated to be core leaders in their countries. Trainees visited several IL centers in Japan and built good relationship. Host IL centers continued their support to trainees even after the program. Some centers had not only provided fund for establishment of IL center but also dispatched their PWD staffs for IL seminar and workshop held at trainees’ countries.
Key to success in the establishment of IL center under collaboration with other organizations, such as JICA, is whether PWD side can take initiative in a project. In our case, we successfully led the IL project because Yukiko could open the communication channel to the center of JICA. Due to support from director-level staffs of JICA headquarter to our initiative in the project, we could select appropriate IL leaders in Asian countries for training and even influenced for realization of public support to IL centers and personal assistance service through government channel.
3. Cases of Influence of IL Philosophy and Movement to Government Policies
The first IL center in Pakistan was established in Lahore in 2002. Its first activity was accessibility check of parks. Responding to this, Lahore improved accessibility of parks by equipping ramps and widening gates. Then, the center started support independent living in community. The first user of its support was a man with cerebral palsy. His father, a powerful figure of the city, sued the center as cheating his son with the word of independence. The court dropped the case by acknowledging his son’s will for independent living.
In 2005, very powerful earthquake hit the Kashmir region. Staffs of IL center collected relief supplies such as food and blankets from their community, and delivered goods to damaged region by themselves with two tracks just two days after the disaster. Then, they opened “mobile IL centers” in the disaster-plagued region, and organized peer-counseling for PWDs who had physical and psychological damages. Their relief activities impressed the World Bank and gained three-year grant for operation of four mobile IL centers and peer-counseling. Pakistan government, and JICA, also highly evaluated IL activities and began to consider reflecting IL into their policies.
In September 2008, IL leaders in Pakistan informed us that the national government decided to provide 1,000 rupee to each PWD (2,000 for severely disabled) per month as disability allowance. This allowance can be used for personal assistance service. The government also decided to provide wheelchairs and consulted to IL centers on possible method for provision.
Nakhon Pathom IL Center in Thailand collaborates with more than 10 OBTs (local government unit at village level) in the prefecture and organized peer support meetings. The center utilizes the meetings as the site to disseminate the rights of PWDs and philosophy of IL. OBTs now allocate budgets for peer support meetings and entrust to the center.
Thai government highly evaluated center’s activity and provided 1,600,000 baht (37,000 euro) from welfare fund to two IL centers in Nakhon Pathom prefecture in 2006 and 2007 as a model project for future welfare system. This government fund can be used for office rent, program operation, staff payroll and personal assistance service.
Currently, there are 7 IL centers in Thailand. Some IL centers also receive 250,000 baht (5,800 euro) from OBTs for their services including independent living program, peer-counseling and personal assistance.
4. Diffusion of IL Movement into Asia and Other Region
(1) Stalemated Experts
In the last 20 years, development experts who follow WHO support methods such as CBR have occupied majority in PWD-related issues in international development. Their method, however, has not made much achievement. Since they did not have connection with PWDs who operated IL centers, knowledge on community development in terms of IL movement was not transferred. Despite of the popularity of participatory development in the field of international development in the last 30 years, actual participation of PWDs in the project, which was planed on the basis of PWDs’ needs and their initiative, has been rare.
In this situation, PWD-led project of APCD to support establishment of IL centers achieved substantial result. It changed PWDs in community, local public administrations, and welfare systems. Success of the project lured international development organizations into PWD-led IL projects. JICA now defines IL as one of its star projects. With participation of existing IL centers, IL project is expanding into not only the rest of Asia but also African and South American countries.
(2) Diffusion of IL in Asian countries
(a) From Korea to Malaysia, Pakistan and Philippines
Leaders of IL centers in Japan became resource persons in IL programs by APCD. Some trainees from Asian developing countries, however, confessed us during the training that they could not feel the possibility of IL in their countries because of too much difference with Japan. They said that IL would be possible only in economic advanced countries.
To have their understanding that IL is possible in other Asian countries, we invited Mr. Park Chano, president of CIL Seoul in Korea, to the training as assistant resource person. Since Korea’s economic and welfare conditions were much similar to other Asian countries, his presentation on disability movements and IL centers in Korea impressed and motivated trainees for establishment of centers in their own countries.
(b) From Nepal to Vietnam
IL center was established in Nepal after Mr. Krishna Gautam’s return to Katmandu from 9 month training in Japan in 2004. CIL-Katmandu committed to improvement of accessibility and dissemination of IL philosophy.
It was the executive director of NCCD (National Coordinating Committee on Disability) in Vietnam who was impressed by information on IL center in Nepal and considered that successful establishment of IL center in Vietnam would be also possible. He persuaded senior officers of the Welfare Ministry and let vice ministry visited to IL center in Japan. Currently, there is activity to include a clause on public support to IL center in the draft of welfare law which is supposed to be adopted in 2009.