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The Cultural Perspectives of Independent Living and Self-help Movement of People with Disabilities

Yutaka Takamine *


* Mr. Yutaka Takamine is now working for the UNESCAP as Project Expert on Disability and this article is presented in an individual capacity.



Abstract Independent living (IL) movement of persons with extensive disabilities originated in Berkeley, California in the early 1970s. Over the past 20 years, the independent living movement crossed national boundaries and began to influence disability movements in many countries. In Japan, for example , a network of independent living centres was established. The Japanese IL programmes have been directly influenced by the independent living programmes developed in the United States. Through this network and other sources, the concept of independent living is begun to be known to the developing countries of this region. This paper will discuss the cultural perspectives of independent living in comparison with the self-help movement of persons with disabilities in the Asian and Pacific region.



What Does Independent Living Mean?

People with disabilities have expressed diverse views on Independent Living (IL). For some people, IL is to live with the same freedom of choice as non-disabled persons. It does not necessarily mean that you live on your own, but that you control where you live and have the same range of choices as a non-disabled person. One may highlight IL as an idea, a concept, a thought process that you can apply to your lifestyle, while others may conclude from one's own experience that IL means freedom to discover and actualize one's potential for work, friendship and so on with the assistance of assistive devices, or by hiring an assistant. Independent living implies defining one's own lifestyle (Independent Living Committee, 1990).

Independent Living Programme

The principles advocated by the founders of the independent living movement were :

1. People with disabilities have a right to live in their own communities.
2. People with disabilities know best their needs and their organizations can provide services to meet those needs.

Independent living programmes share certain core services. They include IL skills training, peer counselling and peer support services, personal care attendant and other referral services, and advocacy. The unique characteristics of independent living programmes are that they provide both direct services and advocacy. Direct services enable persons with extensive disabilities to leave institutions and to live independently in the community. On the other hand, advocacy helps disabled individuals receive entitled public services. It also creates awareness towards disability and promotes changes in society which benefit all.

Independent living carries with it the tone of individualism that is one of the major characteristics of the western culture. In some instances, independent living means to break away from family members to become financially and emotionally independent of their influence. It requires a certain degree of assertiveness to express one's clear opinion or choice. In the Western culture, children are expected to leave their home and become independent of their parents when they reach a certain age, including persons with disabilities. Thus, it is natural for disabled persons to try to seek an independent lifestyle.

People in this region, however, tend to adhere to harmonious existence rather than confrontational. They are more concerned about group conformity imposed by the family, peers, clan and the community they live in. Regardless of disability, for many people in this region it is difficult to exercise full control over their own lives. It seems to take a lot of efforts on the part of disabled persons themselves as well as family members to be accustomed to independent lifestyle. As for the parents, they tend to feel guilty that they have abandoned their disabled sons or daughters without their protection and are afraid of criticisms from their neighbours. The parental objection is the first hurdle that most Japanese disabled persons face when they leave the family care and try independent living. For disabled persons, it would be a big step to try independent living as they have never been encouraged to be independent for their entire life and lack skills to deal with solitude.

The development of independent living movement in the West is also parallel with the recent development of new technology and assistive devices (i.e., motorized wheelchairs, computer-aided equipment). The availability of some degree of social services for people with extensive disabilities in the community such as personal care attendant service is considered as the prerequisite for the development of independent living programmes. However, such new technologies and services are still not available in most developing countries in this region.

It seems, therefore, that the term "independent living" has not yet been well received by people with disabilities in the developing countries of this region. Independent living programmes have not yet seen except in Japan and other industrialized countries of this region.

The disability movement in this region is mostly based on the concept of self-help, as inter-dependency is the basis of community living in this region. Self-help is defined as follows:

"Self-help requires self-motivation, i.e., the individual's motivation to improve herself or himself and situations that impinge on her or his well-being, as a prerequisite to the achievement of full participation in society" (United Nations, 1991, p.11).

"Self-help means mutual support and empathetic human relationships. It is group solidarity which enables disabled people who are experiencing similar hardship to support each other and to overcome common difficulties through the exchange of practical information, insight and knowledge gained through personal experience. That solidarity and mutual support serve as a basis for collective action to improve the existing situation of people with disabilities in society" (Ibid).

Because of the inadequacy of social services provided by public or private sector, disabled people are bound to help each other in order to survive. Compared with independent living programmes in the West, self-help organizations tend to focus on income-generation activities, employment referral and training services that will help members to pursue economic independence. Some self-help organizations operate various kinds of workshops, provide job training as well as assistance in obtaining assistive devices such as Braille equipment, wheelchairs, and support services for members.

Self-help organizations were established with initiatives of disabled persons in the region without influence from abroad. Although they have been established under restricted conditions in terms of resource availability, self-help organizations of disabled persons share many characteristics with independent living programmes. The characteristics of self-help organizations are considered as "self-determination and control by disabled persons, self-advocacy and mutual support, aimed at strengthening the participation of people with disabilities in community lives" (Ibid., p.12)

There are, above all, two issues that self-help organizations of people with disabilities need to consider in the region in order to achieve their full potential . They are:

1. Promotion of cross-disability cooperation.
2. Development of advocacy skills.

Because many self-help organizations of people with disabilities are started to meet the specific needs of a certain disability group, they tend to be single-disability organizations. However, an organization would soon realize that direct services delivery alone is not enough. Most disabled persons are discriminated against or denied of opportunities to fully participate in community living. Social change is therefore required for people with disabilities to be fully integrated into society. However, single-disability organizations tend to act alone and are not able to generate necessary community support for the change. To influence national policies and programmes concerning disabled persons, establishment of a network of all self-help organizations is an essential step. A coalition that is fully representative of the entire disability community can speak with a stronger voice than a single organization, however many its members.

In addition to the establishment of a network of self-help organizations of diverse disability groups, it is necessary for disabled persons to effectively participate in the decision making process of the government as well as social service providers for disabled persons. Negotiation skills are useful to achieve realistic outcomes from negotiation. Public relation skills are important to inform people of the needs and aspiration of people with disabilities and to promote their positive images.

Independent living centre was originally founded as a service providing entity that delivered essential services needed for persons with extensive disabilities to lead community living. It however surpasses a service delivery organization and becomes strong advocacy-oriented organization in many places. In this regard, self-help organizations may learn from the experience of independent living movement.

Whether it may be called "independent living" or "self-help", people with disabilities in the developing and developed countries alike are striving to achieve "self-determination" and "control of their own lives". To achieve the same goal, however, process may differ depending on cultural, social and economic conditions in which people with disabilities live. Each process should be valued because it is the unique process of empowerment of people with disabilities in the unique cultural, social and economic environment.



References

Independent Living Committee. (1990). What is your personal definition of independent living. In Tools for power. Disabled Peoples International.

United Nations (1991). Self-help Organizations of Disabled Persons. (ST/ESCAP/1087).


ASIA & PACIFIC JOUNAL ON DISABILITY

Vol. 1, No. 2, March 1998

Published by the Asia and Pacific Regional Committee of Rehabilitation International (RI) and the Regional NGO Network (RNN)