Self-reliance in interdependent communities: Independent living of disabled persons in the Asia-Pacific region

Yukiko Oka analyses the results of an ESCAP questionnaire which covers institutionalization, community-based rehabilitation, and the rights of people with disabilities. Internet publication URL: www.independentliving.org/docs4/oka.html

 

Paper prepared by Yukiko Oka, Programme Specialist, Social Development Division
Economic and Social Commission for Asia and the Pacific (ESCAP)
presented at the Post Congress Seminar on Social Rehabilitation
Rehabilitation International 10 -11 September 1988 Hamamatsu, Japan

 

I find this subject interesting, because only a few studies have been done concerning the independent living of disabled persons in the Asia-Pacific region. In fact, the region covers more than 60 per cent of the world's disabled population. This population has great political, economical and cultural diversity, which makes it difficult to come up with a single, unified concept on their independence, common to all the countries in the region.

The diversity is clearly indicated by the range of responses to a recent questionnaire on independent living distributed by the Social Commission of Rehabilitation International. The Asia-Pacific countries that responded were Australia, Japan, Malaysia, New Zealand, Philippines and Thailand. They were categorized into two groups: developed countries (which have schemes similar to the independent living movement in the U.S.A.) and developing countries (which do not, as yet, recognize the human rights of disabled persons, including their rights to education, training and accessible living environment). Most developing and least developed countries can be included in the latter group, despite the fact that they did not respond to the questionnaire. Even in the developed countries, the initiatives taken by Government have been too weak to sustain an independent living movement.

It is generally recognized that in most Asian and Pacific countries, where mutual caring and support in the community is a norm, there is no need for disabled persons to live physically and financially apart from their families. A child is educated and trained to be a contributing member of the family rather than to manage her/his own household alone. Thus, the concept of independent living associated with the developed countries is not always relevant in the developing countries.

What, then, does independent living mean in developed countries? The independent living movement was influenced by the civil rights movement. It called for the granting to disabled persons of the prerequisites for living in the community, such as entitlement to income and medical assistance, educational rights, the right to treatment and other social services. The consumer movement provided the conceptual basis for the independent living movement, since disabled persons had felt themselves adversely effected by the dominance of professionals and service providers in the formulation of disability policies and implementation of programmes.

The developed countries in the region, namely, Australia, New Zealand and Japan, have experienced an increased awareness on the part of disabled persons concerning their rights and, consequently, their challenge to existing rehabilitation policies and programmes. Disabled persons have learned that they can exercise control over their lives through self-help activities, often based on nation-wide organizations of disabled persons. Various organizations in these countries, including organizations of disabled persons themselves, aim at the independence of disabled persons through:

  1. Advocacy of a positive image and human rights of disabled persons;
  2. Access of disabled persons to all opportunities, equal to non-disabled persons;
  3. Self-control by disabled people of their lives;
  4. Participation in decision-making; and
  5. Selection and organization of services FOR disabled persons BY disabled persons.

As a result of this organizational movement, disabled people have established certain schemes for independent living.

Australia bases its attendant care scheme on a service model. It subsidizes people aged between 16 to 64 who have been living in a nursing home and need care for up to 28 hours a week. A 1981 survey showed that only 6 per cent of disabled persons lived in institutions. The rest lived in their own homes with opportunity to obtain personal assistance paid for by local authorities, other public agencies and private organizations. Since the scheme does not suffice to meet the needs of the majority of disabled persons, the organizations of rehabilitation professionals and disabled persons are lobbying the Australian Government for direct cash payment in order to allow disabled persons to choose attendants, their costs and quality, and kinds of services.

In New Zealand, a government-funded Attendant Care Scheme has been operating in six cities. The Department of Social Welfare has made a contract with community organizations, such as the Disabled Living Center in Hamilton, to administer the Scheme. Funding for the payment of attendants is adequate and a list of attendants is maintained. However, the working hours of the attendances are not enough to meet the needs of disabled persons. This Scheme is expected to become upgraded in terms of coverage and number of hours of attendance. In contrast, disabled persons who are beneficiaries of the Accident Compensation Corporation Scheme are fully funded for adequate attendent care.

Although many disabled persons in Japan are still either institutionalized or at home under the care of their families, the Government has begun to meet their wish to live independently in the community. They usually live in an apartment alone, with the assistance of volunteer attendants where required. The personal attendant scheme is not yet complete. The measures for assistance for independent living vary from direct cash payment made to severely disabled persons, their families and attendants, to the provision of attendant care tickets, despatch of home helpers by the welfare offices, provision of emergency institutional care and financial assistance for management of an independent living center. The independent living movement in Japan has been very much influenced by disabled activists in U.S.A. The Japanese scheme is, however, distinguished by dependence on unpaid voluntary care.

All the measures adopted by these developed countries are regarded as unattainable by disabled persons in the majority of Asia and Pacific countries, where disability is strongly associated with poverty, illiteracy and poor health. Most disabled persons in those countries are too poor and illiterate to struggle for access to available social services. Many of them are not even aware of such services as health care, education, vocational training and employment. The problem is more serious for the 70 to 90 per cent of them who live in rural areas, as available programmes tend to be centralized in urban areas.

Let us take the example of rehabilitation services. Rehabilitation has been available to disabled people only through special medical and vocational institutions in which they are given treatment and training. They are located usually in the capital or a big city, far away from their homes. The number of the institutions is very small. It is estimated that today, among the disabled people in need of rehabilitation, only 1-2 per cent have access to any services. Moreover, most institutions provide rehabilitation only for certain types of disabled people and for certain age groups. In Lao PDR , there is only one institute for disabled persons, i.e. the National Center for Medical rehabilitation in Vientiane, providing services only to orthopaedically-disabled children and adults. In Bhutan, the two existing rehabilitation institutions are the physiotherapy department for physically disabled persons, located in the Thimphu General Hospital, and the School for the Blind.

A popular alternative to establishment of residential homes and rehabilitation institutions is the community-based approach to rehabilitation service delivery, including income-generating schemes for disabled persons within the community. In developing countries, villages are the focal points of community living of disabled persons. The bulk of the rural population is engaged in agriculture, rural trades, indigenous crafts, farming, including animal husbandry. Rural families are normally large; three or four generations may live and work together to survive in a labour-intensive agro-based economy. The community-based approach envisages a similar partnership between disabled persons and the rest of the community for its socio- economic development.

A community-based approach is directed at stimulating greater awareness among villagers of the situation of the disabled among them. The approach establishes a referral system in the community which includes information on disabled persons, support service providers and policy makers at the provincial and national levels. The concept on the rights and duties of disabled persons to participate individually and collectively in the planning and implementation of services is exemplified in the community- based approach. Individuals have equal opportunities in the process of decision-making on matters affecting their lives. The approach may be compared with the institutional approach:

 

  Institutional Community -based
Site of delivery institution home or its vicinity
Size of programme centralized to supervise infrastructures decentralized for greater flexibility in making major decisions in accordance with local needs
Decision-making dominated by the central service providers participatory disabled persons and their families participate
Type of services specialized and categorized based on data integrated and generalized based on community's priority needs and concerns
Financing government funds mainly community funds self-help is emphasized
Expertise professionalization of care practical knowledge gained from field experience
View towards disabled persons sick and helpless dependent second- class citizens equal members of community active independent
Role of disabled persons beneficiary contributor
Method of participation for disabled persons nil through the organization of disabled persons

In the case of Malaysia, Philippines and Thailand, most disabled persons are cared for by their families. It is hoped that the adoption of the community-based approach will help disabled members to become self- reliant and self-supportive. According to a WHO estimate, 70 per cent of disabled persons in the community need only simple training which could be provided by the family, with guidance from community-based rehabilitation workers. It is said that only 10 per cent of disabled persons need the specialized services provided by rehabilitation institutions or hospitals.

Self-reliance and financial contribution to the family economy are the most important factors which determine the independence of disabled persons. As a part of the community-based rehabilitation (CBR) programme, the Assistance for Blind children in Banqladesh, supported by voluntary organizations, started in 1980 a rural rehabilitation project for blind children. This was extended to blind adults in 1983. To date, 430 blind persons have been provided with cows and goats to raise with the assistance of their families. Regular technical advice is provided. The Christoffel Blindenmission has also implemented a similar project in Bangladesh. In Nepal, an income-generation project to raise cattle has been implemented, with support from the World Blind Union.

Community-based rehabilitation includes other measures to facilitate the independence of disabled persons. Self-help activities of disabled persons in the community is encouraged, varying from the formation of discussion groups to the conduct of educational classes, skill training, social activities and political campaign. Integrated education is the key to preparing disabled and non-disabled persons for equalization of opportunities. With training and assistance, disabled children can study in the ordinary school setting. Improvement of the physical environment is an important community responsibility to assure disabled persons' accessibility.

Among developing countries in the region, Malaysia, Philippines and Thailand are being rapidly industralized. A concomitant of this is the increasing nuclearization of the family. But, Government resources for disability-related programmes are not yet adequate. There is limited assistance provided to disabled persons in the form of guidance, counselling, equipment and medical aids in Thailand. The situation is similar in Malaysia and Philippines, where voluntary organizations try to fill the service gap arising from limited provision of government rehabilitation and social services. No government fund is available for a disabled person to employ an assistant in any of the three countries. In Malaysia, it is reported that the traditional method of caring for disabled member has placed more burden upon the family while solidarity among family members has weakened. Only rich families can afford to employ domestic help to serve as attendants.

In planning to cope with new social development trends, Governments need to enact effective legislation in all areas affecting disability, providing for adequate support through permanent machinery to take disability concerns fully into account. The existing laws and provisions should be examined in terms of the human rights of disabled persons.

As has been strongly urged by organizations of disabled persons, Thailand is expected to soon pass a Bill for the Handicapped. The Bill was first drafted in 1979 and later revised. It includes provision for a quota system which stipulates employment of disabled persons at a ratio of 1 to 100 non-disabled persons. Also proposed for inclusion in the Bill are the establishment of a rehabilitation office for the handicapped, a rehabilitation fund, the registration of all handicapped people to receive state welfare benefit, and a written declaration of the rights of disabled persons to medical care, education, employment and social participation. It is expected that enactment of the Thai Bill will encourage disabled persons in other developing countries to identify the legislative measures needed for achieving their own independence and lobby their Governments to provide for appropriate programmes for disabled persons.

Public awareness, especially awareness of leaders, is a vital factor in the attainment of independent living by disabled persons. In developing countries the authority of community leaders is strong. Authority lies with religious leaders, local authorities, including village headman and officials, traditional healers, school teachers, postmasters, health workers, extension workers, landowners and political leaders. They assist, influence and mobilize individuals. If their response to disability concerns is negative, community activities to promote self-reliance of disabled persons would be hindered. If school teachers are unwilling to admit a disabled child, the first step towards the child's independence is obstructed.

It is often difficult to motivate these leaders to be interested in disability issues because of the prevailing misconception of disability, which is much stronger in rural than urban areas. In Bangladesh, a common attitude towards disabled persons is that "disability is what God has desired for them and there is nothing that can be done about it". This attitude condemns disabled persons to a state of dependency and inferiority. The parents of a disabled child in Nepal are reconciled to its birth as "misfortune" which has befallen the family in terms of the "coming of a criminal to a family". In Bhutan, disability is linked with the manifestation of evil spirits in this or the previous life.

Experience shows that negative public attitude toward disability is less only when disability arises from combat duty or-national service. The war-disabled are, nevertheless, regarded as a burden to the family and community, if they are not self-reliant and financially contributing members.

Changing negative attitudes through public enlightenment and information is one of the priorities emphasized at the Regional Expert Seminar to Review Achievements at the Mid-point of the United Nations Decade of Disabled Persons organized by ESCAP last year. Some of the strategies discussed at the meeting to promote independence of disabled persons in the region are:

(i) Recognition of the roles of the judiciary, civil services, executive and community in implementing the World Programme of Action concerning Disabled Persons;

 

(ii) Recruitment of men and women with disabilities who have proved to be successful as advocates for change;

 

(iii) Preparation of a handbook or manual giving an appropriate non-devaluing and non-emotive factual representation of disability and disabled persons; and

 

(iv) More scientific and extensive utilization of the media to portray people with disability in a positive light.

The independence of disabled persons should be something not given to but acquired by disabled persons by themselves. There are two steps that should take place before they may consider themselves as independent members of the community. First, they must fully understand the roles and responsibilities incumbent upon an independent member of a community. The terms of citizenship may differ from country to country, but it holds true that a disabled person has equal rights as the non- disabled in a community. Second, they have to participate in the community in a constructive way. They can bring about positive changes through increased community awareness of the potential, competence and rights of disabled persons.

Among approximately 40 countries in the Asia and Pacific region, 25 countries already have self-help organizations of disabled persons. Twenty of these organizations are nation-wide cross-disability organizations. The representatives of those organizations in Australia, New Zealand; Pakistan and Thailand have succeeded in achieving active participation in the policy-making process in their respective countries and in international bodies. They have exercised their influence to improve the status of disabled persons. The organizations of disabled persons in other developing countries of the ESCAP region are still young and weak, but I believe they will gradually be empowered. Through a democratically unified voice, organizations of disabled persons, based on their unique experience, can work effectively to protect their human rights, to ensure that their wish for independent living in the community is met.

It is up to the disabled persons of the Asia-Pacific region to determine the diverse indigenous modes of independent living which best suit their own participation in community life within local and national contexts. In the prevailing rapidly changing social circumstances, I am certain that disabled people of this region will chart their own independent course for an Asian and Pacific independent living movement.

REFERENCES

De Jong, Gerben, The Movement for Independent Living: Origins, Ideology, and Implications for Disability Research. 1979 University Centers for International Rehabilitation (Michigan University), U.S.A.

Economic and Social Commission for Asia and the Pacific. Mission reports to Bangladesh, Bhutan, Lao People's Democratic Republic and Nepal. 1987, Thailand.

Report of the Regional Expert Seminar to Review Achievements at the Mid-point of the United Nations Decade of Disabled Persons. 1987, Thailand.

Social Commission, Rehabilitation International. Questionnaires on independent living filled by Australia, Japan, Malaysia, New Zealand, Philippines and Thailand. 1988.

United Nations. World Programme Or Action concerning Disabled Persons. 1982, New York.

 

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