Women and Disabilities Workshop - Materials: Concerns of WwD in CBRs

ADDRESSING CONCERNS OF WOMEN WITH DISABILITIES IN CBR

Maya Thomas*, M.J. Thomas**

ABSTRACT

Women with disabilities worldwide are emerging from their isolation to take their places in societal mainstream. However, the situation in developing countries is quite different. In the available literature on women with disabilities in developing countries, it is often stated that these women face a triple handicap and discrimination due to their disability, gender and developing world status. In the South Asian context, gender equity is an issue for a large majority of women, given the socio-cultural practices and traditional attitudes of society. Therefore, many of the issues that are faced by women in general in a male dominated society, also have an impact on women with disabilities. In addition, women with disabilities from these countries face certain unique disadvantages compared with disabled men. This paper discusses some of these unique disadvantages that disabled women in developing countries face, and suggests possible strategies to overcome these disadvantages in a community based rehabilitation setting.

INTRODUCTION

The major change in strategy in rehabilitation for people with disabilities over the past twenty-five years has been the expansion of services into the community, which developed into a differentiated programme called `Community Based Rehabilitation' (CBR).

World Health Organisation and other UN agencies promoted CBR in the early eighties to provide services at affordable costs for people with disabilities in developing countries. Implementation of this method involved shifting rehabilitation interventions to homes of people with disabilities and their communities, to be carried out by minimally qualified volunteers such as families and other community members. In the early eighties, CBR was conceptualised and evolved primarily as a service delivery method with a medical focus. Subsequently CBR changed its focus from a medical to a comprehensive approach. Another simultaneous change was the shift from restoration of functional ability in an individual, to modifying community attitudes and contextual factors. It was recognised that mere change in an individual to 'fit' her into the community was not enough but that it was equally important to change contextual factors around her. Changes in contextual factors involved changing attitudes of others to accept people with disabilities and promote their social integration. It also meant provision of equal opportunities in education, employment, protection of rights and so on. CBR is now moving from a service delivery approach to a community development process. This means that CBR is no longer just a form of 'therapy in the community', but an approach that promotes community participation and community ownership of programmes. It also recognises that disabled people should have access to all services that are available to others in the community. A more recent change in the field of CBR is the rapid growth of organisations of persons with disabilities to advocate for themselves. The goals of CBR can be enumerated today as an enhancement of activities of daily life; creation of awareness, achievement of barrier free environment, attainment of equal human rights; and creation of a situation in which the community participates and assimilates ownership of the programme (1).

WOMEN WITH DISABILITIES

There are many illustrations of problems and challenges faced by women with disabilities in literature, but mainly from the developed world (2). In the nineties, women with disabilities began to be more strongly represented at different levels in the disability movement in the West, and their concerns were also taken into concern at international platforms like the Beijing Women's Conference in 1995. The situation in developing countries however, remains quite different. There is less research on issues facing women with disabilities in developing countries, even though the majority of women with disabilities live in these countries. In the available literature on women with disabilities in developing countries, it is often stated that these women face a triple handicap and discrimination due to their disability, gender and developing world status (3, 4). In the South Asian context, gender equity is an issue for a large majority of women, given the socio-cultural practices and traditional attitudes of society. Therefore, many of the issues that are faced by women in general in a male dominated society, such as limited access to education and employment, the problems arising from traditional cultural practices that tend to seclude women from public life, and so on, also have an impact on women with disabilities. Although disability leads to inequality and marginalisation of both men and women, disabled people are not a homogenous group. Women with disabilities from developing countries face certain unique disadvantages compared with disabled men, as described in the following sections. In many developing countries, poverty can exacerbate these disadvantages, by limiting access to resources and to rehabilitation services.

TRADITIONAL GENDER ROLES

For men and women, expectations of gender roles are different, especially in traditional societies such as those in the Indian sub-continent, where each gender is expected to perform different roles in society, according to different criteria. These roles are determined by historical, religious, ideological, ethnic, economic and cultural factors (5). In these societies, men are expected to work outside the house, earn a living and support a family, while women are judged according to their physical appearance, and their ability to look after a home, their husbands and children. Traditionally, women are expected to take the responsibility for all domestic chores, entertaining visitors, overseeing celebrations of events or religious ceremonies in the house, and so on.

According to Manu, an ancient lawmaker of India, 'In childhood a woman must be subject to her father, in youth to her husband and when her Lord is dead, to her son. A woman must never be independent'. Although society's view of women has come a long way from the time of Manu's law, in most traditional societies, the roles of a wife and mother continue to be the most important roles assigned to women. A woman is revered as a mother, especially if she has sons.

Disability can have a profound impact on an individual's ability to carry out traditionally expected gender roles, particularly for women. Although both men and women with disabilities would face difficulties in fulfilling their expected gender roles, as long as a disabled man earns a living, his chances of getting married and having a family are much more than those of a disabled woman. A disabled woman is perceived as one who is unable to perform her traditional roles of wife, mother and home-maker because of her disability, even if she may be able to do so in reality. For example, a woman with a mobility impairment may be perceived as one in need of physical assistance in self care and grooming, and therefore unable to carry out the domestic tasks that require mobility and physical labour. Some studies report that women with disabilities are less likely to be married than disabled men (6). This is largely due to negative attitudes and stereotypes about what disabled women can or cannot do, particularly in societies where marriages are arranged by the elders and is a contract between the concerned families rather than the individuals. There are misconception that because of her physical disability, a woman may not be competent in any sphere. In addition, because there are few positive role models for women with disabilities, many myths prevail about them. As a result, many disabled women come to consider themselves as 'non-persons, with no rights or privileges to claim, no duties or functions to perform, no aim in life to achieve, no aptitudes to consult or fulfil' (7). Women with disabilities also have less chances of meeting potential marriage partners, because of restricted mobility and freedom. In a few instances, disabled women may be 'married off' by their families to 'wrong' persons, such as men who are already married, so that the families can 'get rid of the burden' of caring for them. There may be higher demands for dowry in the case of a woman with disability. Women with disabilities are also more likely to be divorced or abandoned than non-disabled women (6).

Child-bearing, like marriage, is considered as the natural destiny of every woman in traditional societies in the sub-continent. Being childless is considered to be a great misfortune, for which the woman is usually held to be responsible. Women with disabilities face specific attitudinal barriers in this regard. They are perceived as being in need of care themselves because of their disability, or the common belief is that looking after children requires physical fitness and mobility, which disabled women may lack. Because of these reasons, women with disabilities are perceived as being unable to fulfil a caring, mothering role (8). Additionally, there may be misconceptions about her disability being inherited by her children. Women with disabilities may also have less access to information and health care services related to their special needs in relation to pregnancy and child-bearing.

When it comes to household tasks, women with disabilities may face difficulties in carrying out the responsibilities of all the domestic chores that are normally expected of a woman in traditional societies, or may take longer to perform the tasks, or may require some assistance in doing so. Because of their disability and restricted mobility, society considers them as ill suited to perform the role of home-maker.

ACCESS TO REHABILITATION SERVICES

Women with disabilities generally have less access to rehabilitation services than disabled men. In accordance with the traditional social and cultural norms in village societies, many women do not go out of their houses to seek help for health care, especially if the care-provider is a male. Most rehabilitation personnel, including CBR workers in developing countries are men. Thus even home based services provided by male CBR workers, are out of reach for women with disabilities. Strangers, even if they are part of a service provider team, are usually not allowed inside the house in traditional societies. If these strangers are male, it is next to impossible for them to even talk to the women in the house (9). Even if a traditional community accepts males as service providers in health care and rehabilitation to some extent, it still would be impossible for them to provide services to, or teach, the women in the community. Such a situation can only be improved if local women were to be trained as rehabilitation workers. While women rehabilitation workers are becoming more common in the sub-continent, cultural barriers continue to persist, preventing women from taking up rehabilitation work in the community setting, because it involves visits to houses of strangers.

The preponderance of male rehabilitation workers and the relative absence of trained women workers in a community setting, are major barriers faced by women with disabilities in the sub-continent from accessing rehabilitation services. In the case of fitment of mobility aids in particular, women with disabilities experience a unique difficulty. A large majority of people with disabilities in the sub-continent, many of whom are women, require mobility aids because of polio and other physical disabilities. However, most trained technicians in orthotics and prosthetics are male, and women with disabilities who require mobility aids are unable to access the services of measurement and fitting of aids from male technicians due to the cultural taboo related to being examined by men (10).

Women with disabilities also have less access to other health care, education or vocational training opportunities than disabled men. But this situation is common to women in general in the traditional societies in the sub-continent, where women's health needs are usually relegated to the last place in the hierarchy of family needs, where women's education is considered as an 'unnecessary luxury', and where women are not expected to go out and work to earn a living. Hence the problem of access to services not unique to disabled women.

PARTICIPATION IN COMMUNITY LIFE

Women with disabilities tend to have less opportunities to participate in community life than disabled men, mainly due to cultural reasons. Restricted mobility and absence of access provisions in the surrounding environment can also be a hampering factor in the participation of women with disabilities in community life, but this aspect is common to disabled men as well.

Families of disabled women in general tend to be over-protective about them, and prevent them from going out much, for fear that they may be exploited in some way because of their disability. Although well-intentioned, these anxieties can be stifling to women with disabilities. There are superstitions in village communities about the presence of disabled women being inauspicious in community gatherings. It is also believed that their presence in a family can block the chances of marriages of their female siblings (3). As a result, many women with disabilities remain confined to their parental homes, without being able to play the roles traditionally expected of women in society. This can lead to feelings of isolation, loneliness and low self esteem in women with disabilities. Families in traditional societies are generally supportive in terms of physical assistance to their disabled women, but often fail in providing emotional support which is a more complex issue (3). Many families ignore the existence of feelings, emotions and the need for emotional support in women, especially if they are also disabled.

In recent years, many self help groups and associations of people with disabilities have been established in most countries in the sub-continent, but women with disabilities are under-represented in these groups. The leadership in disability groups at various levels tends to be dominated by disabled men. Likewise, women with disabilities are hardly represented in the women's movement that has grown in these countries over the last decade, because they are seen as 'different' or 'disabled', and not as 'women'. As a result, the concerns that are unique to women with disabilities have tended to remain neglected by both the disability movement and the women's movement.

EXPLOITATION OF, AND VIOLENCE AGAINST, WOMEN WITH DISABILITIES

Women with disabilities tend to be more vulnerable to exploitation of various kinds, such as sexual harassment, domestic violence and exploitation in the workplace. According to the 1995 UNDP Human Development Report, women with disabilities are twice as prone to divorce, separation, and violence as able-bodied women (11). Disabled women also tend to be relatively easy targets of sexual exploitation, particularly if they are mentally retarded. In general, disabled women tend to be in a state of physical, social and economic dependency. This can lead to increased vulnerability to exploitation and violence. Because of the relative isolation and anonymity in which women with disabilities live, the potential for physical and emotional abuse is high. It is estimated that having a disability doubles an individual's likelihood of being assaulted (4). At the same time, and because of their isolation, women with disabilities are likely to have less resources to turn to for help.

SOME STRATEGIES TO OVERCOME DISADVANTAGES FACED BY WOMEN WITH DISABILITIES

The Asia Partnership for Human Development suggested that it is important to listen more carefully to the voices of women, in order to move forward in international community disability work (12). While women with disabilities form an important sub-group in most CBR programmes, usually there are no strategies that are specially tailored to address the unique disadvantages that they face. However, in some countries in South Asia like Pakistan and Afghanistan, the need for culturally appropriate services has been recognised, and are being provided within the 'purdah' culture, for women with disabilities and for female carers of children with disabilities (9, 13). In these societies, where women are segregated from men, there are specially planned, women-oriented programmes being carried out. Examples of such interventions are training of women service providers, and carrying out camps, workshops and seminars exclusively for women by women. These programmes take special care not to contradict the prevailing cultural norms of behaviour.

In a traditional society, promoting individual rights amongst women with disabilities in a 'purdah' culture, so that they can access services alongside disabled men, may not succeed easily. The reason is that Asian women, just like other eastern women, would prefer to conform to the traditional norms of the societies in which they live, rather than break away from them, because of the higher value placed on 'collectivism' in Asia. Any individual who attempts to break free of these norms may be seen as the 'odd one out' who disrupts group harmony.

Many of the unique disadvantages that women with disabilities face are related to traditional social and cultural perceptions and beliefs. In this context, CBR approaches may have to address some of the complex cultural, economic and social factors that are related to expectations from traditional gender roles. Public education and awareness building efforts about the potential of women with disabilities with appropriate interventions, would have a role to play in removing misconceptions about marital, domestic and motherhood roles, and in bringing about changes in attitudes. Efforts have to be made to build up positive role models of women with disabilities in the community who are able to fulfil their family roles, in order to change the myths and misconceptions associated with their ability to carry out these roles effectively. Such role models are important to make the community understand that given appropriate interventions, women with disabilities would be in a position to shoulder family responsibilities and also contribute to the family economy.

CBR programmes will need to train young disabled women through home based training or through peer support groups to focus on grooming, self care, domestic, physical and social skills. Through these efforts, positive role models of disabled women can become available in the community, and act as a motivator for other disabled women and their families. Issues regarding fertility and childbirth in the case of women with disabilities may need specialist referral support from medical services. Since women with disabilities have difficulty in performing some domestic tasks or may need to perform them differently, CBR programmes will need to explore how best to support them, through simple adaptation of the home and the surrounding environment, and through assistive devices like low trolleys and so on, that are more appropriate in rural households where many tasks like cooking and cleaning tend to be performed at the ground level.

Lack of access to rehabilitation services by women with disabilities can be overcome by training more women community workers to provide services. While the availability of trained women workers in CBR programmes has improved in many countries in south Asia today, one area where women with disabilities continue to face difficulties is the fitment of appliances, where the technicians are predominantly male. This is a major deterrent to the achievement of mobility by women with disabilities. Most training institutions in orthotics and prosthetics also have not recognised this problem sufficiently. However, of late, there have been innovative attempts to address the issue by training disabled women as technicians to provide mobility aids for women with disabilities (10). These efforts will not only improve access to services, but also improve mobility in disabled women, which in turn can help to foster positive attitudes about their capabilities and roles in the community.

Providing girls and women with disabilities with better educational and employment opportunities will serve to improve their situation by reducing their dependence on their families and providing them with opportunities for self reliance. A study in China has shown that education of disabled women was closely related to marriage and chances of employment (14). Increased opportunities gave the women more self confidence and better social positions, thereby increasing their chances of getting a life partner.

Promoting self help groups of women with disabilities will play a major role in reducing their isolation, providing mutual support, and improving their participation in community life. It can also promote economic self-reliance if they have access to income generation activities through micro-credit and other schemes. Being economically self reliant will give a woman with disability an added advantage in a marriage and allow her to contribute to the household economy. Promotion of self help groups will help to reduce over-protection by families. In addition, self help groups can educate women with disabilities about their rights and opportunities, and greatly reduce the chances of exploitation and violence against them.

CBR programmes need to sensitise disabled persons' organisations and women's groups, to include the concerns of women with disabilities in their agenda. As an initial strategy, it may be helpful to promote groups of women with disabilities, to educate them about their rights, and to build up their capacity for advocacy and lobbying. Alongside, efforts will have to be made to include women with disabilities in the larger disability groups and in the women's movement.

CONCLUSION

World-wide, women with disabilities are emerging from their isolation to organise themselves, and to form their own self help and rights groups to address their concerns. In developing countries, there are a few women with disabilities who have overcome prejudices and negative social attitudes to become role models for others. Some countries in South Asia have formulated policies relating to health care, education and rehabilitation to include women with disabilities. Many non-governmental organisations in these countries are also beginning to include issues facing women with disabilities into their agenda. However, women with disabilities continue to face problems related to access to opportunities, negative attitudes and environmental barriers, which are problems that all disabled persons face. These barriers, coupled with some of the unique disadvantages that women with disabilities face in traditional societies in developing countries, have contributed to keeping them marginalised, preventing them from taking their rightful places in these societies. It is possible to bring about a change in their situation through specially planned CBR programmes to overcome the disadvantages that they face and to make them integrated, contributing members of their societies, with the same opportunities and choices as anyone else.

*Policy Advisor and Consultant
**Consultant Psychiatrist
J-124 Ushas Apts, 16th Main, 4th Block, Jayanagar
Bangalore - 560011, India
Tel & Fax: 91-80-6633762, email: thomasmaya@hotmail.com

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