Development and Self-Help Movement of Women with Disabilities

by Yukiko Nakanishi
President, Asia Disability Institute, Chairperson, DPI-Japan International Committee

A popular Japanese expression says that "A women has no house to rest in anytime", meaning that a woman should obey her father as a child, her husband as a wife, and her children as an elderly person. In Japan, as elsewhere in Asia, women continue to be treated as substantially inferior to men.

The problems of women with disabilities are especially more intensive than those of women without disabilities. The issues and problems facing women with disabilities are numerous as all of you are already aware. Poverty and injustice are cores of vulnerability and deprivation of women with disabilities.

Development assistance which is provided by their fellow women with disabilities is projected to help them get access to resources and to educate them how to acquire power over resources.

This article focuses on development assistance models and philosophies for women with disabilities who struggle to achieve independence in Asia, first from the viewpoint of a development program organizer and then from the viewpoint of a witness of empowered self-help movements.

Concerns to Be Noted for Development Assistance Program

• The gap between rich and poor people and rich and poor nations, is widening in the world today. Women and girls are among the poorest. The survival of those with disabilities is especially threatened by poverty. Their poverty seriously reduces their health and well-being. This makes the participation in the development of their community and their society almost impossible.
• Socio-economic status is directly related to the quality of life. Low social status, poor health conditions and limited ability to access economic and political resources go hand in hand.
• The traditional model for the service delivery is vertical, based on technology provided by professionals and institutions. It is expensive and available predominantly in urban areas. It is difficult for the majority of women with disabilities living in rural areas to use the services due to lack of information; hesitation to ask for services; lack of independent mobility; and lack of money for transport and fees. They sometimes are very much afraid that their request will be rejected by professionals, even if they can reach the service provider.
• Community-based rehabilitation (CBR) is one of the examples of an alternative horizontal approach. Since CBR encourages women with disabilities community participation as CBR workers and service users, it is an effective way to give women access to decision making and benefits. In terms of human rights of women with disabilities, CBR is better for, but hardly gives the full guarantee of, their independent living in the community, especially when they need to be integrated into social life through marriage and child bearing.
• It is easier for women with disabilities to claim their right to access to projects, if they are backed up by special supportive measures.

Belated Attention of Funding Organizations

The need for integrating women in the development program has been emphasized for the last two decades. it was placed on the agenda of the international Women's Year. To take it into action, such organizations in the United Nations as the International Research and Training Institute for the Advancement of Women (INSTRAW) and the Voluntary Fund for the Decade for Women, which was later renamed as the United Nations Development Fund for Women (UNIFEM), were created in 1975 and in 1976 respectively. The purpose of these organizations are to provide direct technical and financial support to development projects for women as well as to promote the inclusion of women.

In the field of international development cooperation for women in general, a welfare approach was applied in the 1950s and 1960s. That is to view women as purely passive beneficiaries in the development process and only to emphasize their reproductive role. The same approach is still taken for women with disabilities in the present world.

The above UN organizations have contributed a lot to aid and advocacy for disadvantaged women of the developing world through the provision of assistance to trade and industry, credit, science and technology, agriculture and food security, and policy-making, and national planning concerning targeted women in respective countries. Evaluations have been conducted on their services and there are reports that they succeeded to include gender in international and national policies for refugees and displaced persons, violence against women, human rights, and environment. However, women with disabilities are not their priority area nor target group for whom an assistance project is implemented.

The reasons for lack of more substantial social progress for women with disabilities over the past two decades are many. In fact, development efforts ignore their needs and continue to be directed at improving the social and economic conditions of women at large in developing countries. Their capability as co-partner in development is underestimated by the international development community, which makes assistance strategies to function to maintain social and economic inequalities so as to leave marginalization of women with disabilities.

This is true of many other international organizations. The World Bank, for example, stated in the 1996 annual report that poverty reduction and sustainable development remain the central objectives. Yet no concrete program for women with disabilities is put on their discussion table. NGOs are known to be more flexible and more committed towards disadvantaged people than governmental institutions. But at the same time, NGOs have conceptual and institutional weaknesses connected with the role assigned to them. Women with disabilities are neither recipients of services nor partners of development.

Sharing Experience of Empowered Women with Disabilities

Those women counsellors with disabilities in Japan have developed their leadership through the participation in political activities. The main focus of their movement was to discontinue a practice done in institutions, that is, the extraction of wombs against the will of the female residents. It is assumed that this crime is still being committed somewhere in the country because the institution staff feels it is troublesome to take care of them during their menstrual period, or because the staff fears that they will become pregnant. Many women in institutions experienced being persuaded or forced to agree to the surgical removal of the womb, and this was permitted under the Eugenic Protection Law.

The first collective action against this was taken when a newspaper took up a case of hysterectomies in which a woman with intellectual disability had her womb removed against her will at a university-affiliated hospital. She and her supporters blamed the government on the grounds that the removal of the womb without the consent of persons with disabilities or their guardians was a clear violation of human rights.

DPI-Japan is one of the organizations who showed the biggest interest in this issue, while a national organization of parents of persons with intellectual disability discussed measures to prevent the recurrence of such operations. The government's responsibility for having ignored the situation is the cause of the problem. DPI-Japan thus started a campaign to protect the rights of persons with disabilities, especially those with psychiatric and intellectual disabilities. As part of their campaign the members of DPI Women's Network in Japan and their supporters, together with the close cooperation with lawyers, called for action to ensure that sterilization would not be permitted on wombs of women with physical and mental disabilities. Utilizing the pressure coming from domestic and international communities, they finally moved the government to admit that the law was based on the outdated eugenic concept. The revised law took a simplified approach, but it so far comes to recognize that the prevention of the birth of so called "inferior offspring" is not allowed any more.

It is the first experience for these women with disabilities to get involved in political action. Although only the conventional methods of meeting, discussion with the parliament members and the Ministry officials, and issuance of newsletters and appeals were utilized by them, victory was achieved. Lessons they learned from this experience are the effectiveness and efficacy of organized movements and the crucial role of self-help groups in development.

The number of women in the present executive committee in DPI-Japan is only 3 among 20. It is sure that their strengthened leadership will change this situation in the near future. In the DPI Asia-Pacific region, the situation is very similar to Japan. There are only 5 female regional council members, that is 23%. The voice of women with disabilities collectively given from the member countries in the region will also be helpful in reversing this unbalanced situation.

Principles of Policy of Development Assistance Programs

In conclusion, basic principles are needed to make all of us in this forum aware of the significance of international development programs for women with disabilities, which bring about effective social change. In order to make the program sustainable, we need to keep the following in mind.

1. Aid programs, both government and non government should be expanded and reoriented in order to address the needs of women with disabilities, especially throughout their life cycle, through specific programs and projects to establish and strengthen self-help activities of women with disabilities.
2. Women with disabilities must be integrated fully into all levels of development planning and implementation. The importance of early gender analysis is emphasized. If development programs fail to secure the participation of women with disabilities, the achievement of the social transformations will not succeed.
3. In all respects, women must be regarded as men's partner in participating in the decisions that directly affect their welfare. Equal opportunities will make possible the improvements that are urgently needed in the socially recognized position of women with disabilities throughout the world. Women and men need to work together to facilitate change.
4. Literacy training programs should be introduced to women with disabilities. Such programs should be organized in parallel with other appropriate training programs based on women's personal and community needs. They can make an equal contribution to the development process, once given proper training and opportunities.
5. Efforts should be made to help women receive legal guarantees, rights, protection, and entitlements equal to those accorded to men. In some developing countries, men with disabilities, even a child, enjoy a higher standard of legal protection than women with disabilities.
6. Mandatory training programs should be included in the orientation for the staff and field workers in aid programs which enable them to recognize the needs of women and their relationship to development. Discriminatory attitudes towards the role of women with disabilities are, after all, deeply rooted in all cultures, whether in the developing countries or developed ones. The straightforward fact that women with disabilities should be entitled and enabled to contribute to socioeconomic development, is not always easily understood. Training is also needed in participatory and organizational skills to work sensitively with women with disabilities.
7. Groups of women with disabilities which assist self-help groups of women with disabilities should be given priority in granting funds. Their program is need-oriented, compared with other assistance projects.
8. The program planners are encouraged to include representatives of self-help groups of women with disabilities in their programs from the drafting stage. It should be recognized that their participation plays a key role in furthering the efficiency and effectiveness of development programs.
   

    

Reference:

Asaka, Yuho. (1994) Reproductive Health/Rights for Women with Disability. Paper presented at the International Population Conference in Cairo, Egypt.

Driedger, Diane and Gray, Susan. ed. (1992) Imprinting Our Image: An International Anthology by Women with Disabilities. Canada: Gynergy Books.

Gianotten, Vera, Groverman, Verona van Walsum, Edith, Zuidberg, Lida (1994) Assessing the Gender Impact of Development Projects: Case Studies.