Disability Studies Quarterly
Summer 2004, Volume 24, No. 3
<www.dsq-sds.org>
Copyright 2004 by the Society
for Disability Studies


Independent living and self-determination of women with
physical disabilities in Bandung, Indonesia

Inge Komardjaja, Ph.D.
Research Institute for Human Settlements
Ministry of Settlements and Regional Infrastructures, Bandung, Indonesia
Email: inge@bdg.centrin.net.id

Introduction

Like many other women, women with disabilities in Bandung, Indonesia, have the desire to leave the home and to work - in other words, to live independently. Independent living for women with disabilities is about "greater self-determination" and encompasses everything in their whole lives (Priestley, 2001, p. 10). Self-determined women with disabilities decide upon and strive for what they want to achieve without allowing others to interfere with the goals they have set for themselves.

This paper begins to describe the how women with physical disabilities self-determine and achieve independent living in Indonesia, a developing country. As an Indonesian woman with a mobility disability, I am more knowledgeable about lives of women with physical disabilities there. Two other women, Sari and Tini (pseudonyms), consented to participate in a research project of which this is a part. My work in Münster, Germany, during July through October 2001 has helped me to see that while some of the general problems are the same, the specific nature and solutions differ.

The roles of society and government towards people with disabilities Westbrook et al. (1993, p. 621, citing Triandis, 1989) uses individualism and collectivism to explain the cultural differences in social behavior. In collectivist cultures, such as Indonesia's, group goals dominate individual behavior, emphasizing duty, cooperation, and sacrifice for the group. Social control is determined more by shame in collectivist societies, and in individualistic societies by guilt.

In individualistic cultures, such as Germany's, personal goals take priority over group goals. Individualistic societies value autonomy, self-reliance, and independence. In Germany, the state is obliged to make life easier for people with disabilities to the greatest extent possible with the state or city council providing financial support for human assistance and assistive devices. Yet at the same time, the individualistic society of Germany requires people to be personally responsible for their own decisions and actions. In Germany legislation designed to promote the equal opportunity and equal treatment of people with disabilities was passed in 2002, and may be contributing to a growing view of people with disabilities as persons with special needs, no different from that of others with limited mobility, such as children, pregnant women, elderly people, and people carrying luggage. Attitudes towards people with disabilities in developed countries are becoming less negative (Westbrook et al., 1993, p. 615). It is not surprising to see people using wheelchairs in the streets of Münster, many of them moving without the assistance of others.

In many developing nations, discrimination against people with disabilities remains relatively unchanged (Westbrook et al., 1993, p. 615). In Indonesia, while the Department of Social Welfare (1998) has formulated social welfare regulations on behalf of people with disabilities, it has not been effective. The resolution of social problems here is dependent on society more than the state. In collective cultures, social support can be expected for group members (Westbrook et al., 1993, p. 621). Rather than seek aid from a government agency, a poor and sick person will receive funds from a group, usually families and friends, who "voluntarily" collect money. Group members will consider this kind of help as their duty, while running the risk of decreasing their own personal savings.

Women with disabilities, with a focus on Southeast Asia, are preoccupied with coping and survival (Parnwell and Turner, 1998, p. 148). In developing countries, women with disabilities are considered inferior to other women (UN ESCAP, 1995, p. 1) and they confront problems of isolation and marginalization. Lack of self-esteem hinders efforts to improve their situation. Since birth they are either neglected or overprotected (UN ESCAP, 1995, p. 1 & 5), but in some large cities in Indonesia, women are becoming more self-determined.

It is important to note that Indonesia's society is predominantly patriarchal, where the social structures are hierarchical and where women have low status. Women with disabilities are perceived as useless and therefore are excluded from important decision-making and participation. Women with disabilities are expected to accept what has been decided for them by others.

Women with disabilities have to struggle to make independent living in Indonesia a reality. They are not a priority for government aid, and so cannot rely on the government to meet their needs. When they are in urgent need, friends and neighbors will help and support to the extent that they infringe on one's private life. Women with disabilities can easily approach strangers for immediate help because unemployed people or people who are working informally are everywhere.

Independent living and mobility

Analyses of mobility must consider the ability of individuals to negotiate the physical space of the city independently as well as the barriers that may prevent it (Butler & Bowlby, 1997, p. 427). The mobility related-experiences of travelers and residents of Bandung and in Münster offer a striking contrast.

Bandung, home to approximately 2.5 million people, is the regional capital of the province of West Java and lies 180 km southeast of Jakarta, which is the capital of Indonesia. Bandung is a university city that attracts many young people from all over Indonesia. It is a hilly city, causing cyclists, drivers of pedicab tricycles, and users of manually operated wheelchairs to work intensely when going uphill. Heavy traffic crowds the roads every day. Indonesia's prolonged economic crisis allows petty traders and street hawkers to use the sidewalks as their shop space. Due to lack of safe and convenient sidewalks, pedestrians are compelled to walk along the edge of roads. People with disabilities in Bandung encountered inaccessible facilities constantly to the extent that in 1998, an expatriate from the Netherlands queried: "Are there handicapped people in Bandung? I've been here for over two years but have never seen them on the roads." People with physical disabilities are not able to take part in many events and opportunities in the city because of economic and structural barriers in the built environment, although the government is obliged to remove barriers to and in public buildings. Despite official guidelines to build accessible environments, it is possible for builders to ignore the requirement for physical access in the designs without sanctions. Few people with mobility disabilities can afford tickets to the few splendid movie theaters that they are able to enter.

Münster lies in the northwestern part of Germany, with a population of about 281,000. Münster is also a university-city. Much of Münster is flat, an advantage for city planning and for cycling and for people who use wheelchairs. Facilities for cyclists are among the main priorities of the city council. Wide sidewalks with special passages are built to separate cyclists from pedestrians, but many bicycles occupy half the width, which impedes the mobility of wheelchair users. The KOMM project (Communication and Orientation Services for Disabled People in Münster) has contributed to the creation of a barrier-free city. This Internet program is about accessibility of open public spaces, buildings, and all types of institutions for all citizens, but in particular, people with physical and mental disabilities. Such assistive technology aids people with disabilities in dealing with their daily activities of planning their mobility in public facilities (Neumann and Uhlenkueken, 2001, p. 370).

In developed countries, mobility and autonomy are important needs related to employment and adulthood (Turmusani, 2001, p. 199). Mobility signifies "control over one's life in a modernizing world," notably, in finding meaningful employment outside the home (ibid; Gleeson, 1999, p. 38), and therefore is crucial for independent living. Paid work may determine one's social identity in developing countries where economic and social inequalities are more obvious (Turmusani, 2001). For people with disabilities, this relates to "the level of inclusion into society" (Turmusani, 2001, p. 199).

Mobility is often overlooked in developing countries (Turmusani, 2001, p. 199, citing Coleridge, 1993) because there are more urgent needs: housing, education, income, and health. Women with disabilities in developed countries have claimed resources to maximize individual choice that enables them to live independently, but for women with disabilities in developing countries survival exceeds issues of equality in developing countries (Priestley, 2001, p. 10).

The independent lives of three women with physical disabilities in Bandung

This section is a brief description of three women with physical disabilities in Bandung and how they experience independent living. All three are self-determined to leave home and to be self-supporting.

Sari runs a dressmaking business in her home. She uses a wheelchair for her mobility; she does not have a car. She is not able to use the public vans and buses, because there is no space for a wheelchair and because of the steps into the public transport vehicles. Many drivers of public transport do not want to take her in their vehicles. She wheels her manual wheelchair on the roads unaccompanied when she goes shopping or to meet her friends. Sari finds it is stressful and a strain to get to shops and other places because she has to make a great effort to thread her way through congested roads. This self-determined woman has no choice but to take the risk of getting injured on the roads, as well as having to breathe fuel emissions from motor vehicles. She argues, "If the pushcarts can use the road, why can't I. It's the government's fault not to build wider sidewalks and making them free from those [street] hawkers". Sari has begun to have pains in her upper arms and shoulder due to wheeling the wheelchair, although she tries to disregard the pain.

Sari is able to travel alone on the trains, despite the steps to get on and off the train and the narrow compartments. She just has to ask the porter to carry her wheelchair and luggage and to help her to get on the train. As her financial resources are limited, she must bargain for the service.

Her parents live in another city and they rent house for her in Bandung, where she lives with relatives. Her highest formal education is high school with two years of college. Her dressmaking business and the social activities she is committed to are far more meaningful than lamenting the inaccessible city environment. She has learned how to change a situation that is not accessible and find ways to adjust without getting discouraged (A World Awaits You, 2002, p. 13).

Tini uses crutches or a wheelchair. When Tini was a student, people would help her to go up the steps into the building where the classes were held. Now, as an instructor at this same university, she has chosen get around on campus without assistance. To avoid the steps at the entrance gate, she sits on the concrete fence and turns herself towards the building's entrance. This used to embarrass her, but her determination to get herself into the building has helped to her to ignore this feeling.

For travel outside her home, she depends largely on a chauffeur, a domestic maid, family, and friends. She uses her parents' car to travel to and from the workplace, shops, church, bank, and movie theaters. Her parents live in another city and they have rented a house for her and her niece. Her parents do not allow her to live with only a domestic helper; a relative must live with her, too. She is surrounded by people who will not leave her, she believes, and questions why she should take the trouble to walk or wheel on the roads by herself? She says that the bumpy and narrow sidewalks and steps were too troublesome to deal with. If she uses public transport, she requires someone to accompany her because she is not able to get on the vehicle by herself. She fervently desires for easily accessed public facilities, such as vehicles, sidewalks, and steps, so that she can move about the city independently.

I have walking difficulties, but I am able to walk without walking aids. I work for a government organization and have a Ph.D. I live with my mother. I use my parents' car and chauffeur, but for personal freedom, I prefer to travel by public transport, and do so regularly, even if it is difficult to get on and off the vehicle. For me, the city public transport is a necessity. The public vans stop at any place along the routes upon the passengers' request and this shortens the distance to walk. This transport system prevents me from getting too exhausted. When I am preparing to board the office bus, some colleagues suddenly leave because they do not know how to help me into the vehicle, and they fear that they will hurt me by pulling on my impaired arm.

My travel experience to Münster has given me insight into other types of mobility-assistance. An electric wheelchair or a scooter was available for fast mobility in both of the international airports in Jakarta, Indonesia and Frankfurt, Germany.

At the Jakarta airport, my brother loaded my luggage into the trolley, the airport door opened and closed automatically, and the check-in counter was near the entrance of the airport, so getting into the airport and checked in was not difficult. I had come to the airport early and had enough time to walk at my own pace with my loaded trolley, but a porter interfered. In Indonesia porters look for anyone who can pay for their help, although sometimes this is annoying when they force people to use their services. A porter insisted on pushing my trolley, perhaps thinking that my physical disability meant that I had to have his help. After some thinking I decided that I might, and I finally gave in to his incessant offer, although I had to spend money that I had not planned to spend on such assistance.

There was no special assistance during the domestic flight from Frankfurt to Münster or when I landed. The airport in Münster was smaller than the one in Frankfurt, so the distance to the luggage conveyor belt was shorter, but I could not lift my luggage into the trolley and had to ask for help, which was awkward because I do not speak German. I had to rely on my feelings to determine which person I could ask for help. There were no porters for hire unlike the situation in the Jakarta airport.

In Münster I could carry many purchases because the entrances and exits of the city buses were level with the sidewalks. Because most public buildings and open spaces were free of barriers, I could walk around without much difficulty and I was able to visit interesting places.

Discussion and Conclusion

Women with physical disabilities can obtain ongoing or occasional assistance by strangers, friends and neighbors, but not always. In Bandung, women with disabilities from the middle- and upper classes are able to be independent because they can afford to hire maids and chauffeurs. Tini hires a domestic helper for the household chores. I can use a chauffeur. The recent economic crisis with high rates of unemployment has provided a larger pool of employees for women with physical disabilities who need assistance in daily living and mobility.

In Indonesia, a woman with a disability has to determine for herself that she will lead an independent life. Tini took great pains to go up and down the two sets of staircases to give lectures, and she was unlikely to find another job since there are few chances for women with disabilities to earn a regular income. Women with disabilities have to accept the trouble they face, if they want to keep the job. When I told Lea, a woman with a physical disability in Münster about this, she had the following reaction: "This is amazing! In Germany we refuse to do the job because of the stairs. We will make a protest".

In both cultures the women have to be self-determined, but they are self-determined in different ways. The difference is that in Indonesia the women are compelled to accept the physical barriers and cope with the situation as it is, in Germany the state is obliged to change the situation by removing the barriers for example. There are laws, professionals, and technology that provide assistance to people with disabilities.

This paper begins to look at the types of assistance -- paid and unpaid, human and technological, legislated, enforceable or not -- that exists for people with disabilities in developing countries, and how necessary all sorts of assistance are to women who want to live independently. Mobility is a major aspect of independent living. In Bandung now more women with visible disabilities appear in public spaces than about two decades ago. To be able to move around conveniently and have safe access to the built environment is central for women who want to achieve independent living. However, first and foremost, people with disabilities must be their own redeemer (Tandon, 1995). Others cannot help them if they do not change internally and do not begin to take real action. Women with disabilities who assert their self-determined lifestyles and who are in this process have learned to empower themselves (Women in Action, 2001, p.1). Women with disabilities living in a society ignorant of disability issues are finally beginning to speak up.

Acknowledgements

This paper is based on research sponsored by the German Academic Exchange Service (DAAD), who supported me as a research visitor to the University of Münster in Germany. I thank Peter Neumann of the University of Münster who was my host researcher. My gratitude is also for the women with disabilities whom I interviewed who have generously given their time and opinions.

I thank Deb Metzel for her suggestions and edits to this paper.

References

Butler, R., & Bowlby, S. (1997). Bodies and spaces: an exploration of disabled people's experiences of public space. Environment and Planning: Society and Space, 15 (4), 411-433.

Department of Social Welfare of the Republic of Indonesia – Bureau of Law. (1998). Government regulation of the Republic of Indonesia for enhancing the social welfare of people with disabilities (Number 43 Tahun 1998).

Gleeson, B. (1999). Geographies of disability. London and New York: Routledge.

Neumann, P. & Uhlenkueken, C. (2001). Assistive technology and the barrier-free city: a case study from Germany. Urban Studies, 38 (2), 367-376.

Parnwell, M., & Turner, S. (1998). Sustaining the unsustainable? – City and society in Indonesia. Third World Planning Review, 20 (2), 147-163.

Priestley, M. (Ed.) (2001). Disability and the life course: Global perspectives. United Kingdom, Cambridge: University Press.

Turmusani, M. (2001). Work and adulthoods: economic survival in the majority world. In Priestley, M. (Ed.) Disability and the life course: Global perspectives (pp. 192-205). United Kingdom, Cambridge: University Press.

UN ESCAP (United Nations Economic and Social Commission for Asia and the Pacific). (1995). Hidden Sisters: Women and Girls with Disabilities in the Asian and Pacific Region. (ST/ESCAP/1548). New York.

Westbrook, M. T., Legge, V., & Penny, M. (1993). Attitudes towards disabilities in a multicultural society. Social Science and Medicine, 36 (5), 615-621.

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A World Awaits You: A journal of success in international exchange for people with disabilities (2002, December). USA: Mobility International USA.






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