25 years of Independent Living in Sweden
Panel: Indepéndent Living abroad - global perspectives,
intended speech by Shoji Nakanisi
Independent Living Movements in Asia: Its Achievements and Future
I. Achievements of and Challenge to Independent Living Movement
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.