Janene Byrne
A serious road accident has left Rini physically disabled and socially and financially handicapped. The loss of movement in her legs now restricts her work prospects and her bility to carry out daily tasks inside and outside her home. Now she must use an over-sized wheelchair for her petite body.
Defining disability
The general quality of life experienced by Indonesians like Rini is poor. Most people with disabilities in Indonesia go without government welfare, specialised medical treatment and assistive technology. The term 'disability' covers a range of physical, intellectual, and psychiatric conditions which may range from mild to severe.
However, disability is determined by the socio-cultural and physical environment. Where minimal specialist services, programs or facilities exist to meet the varied needs of a person with a disability in daily life, a simple impairment may become a significant handicap. This is the case in Indonesia. The Indonesian government is unable to provide for the inclusion and integration of people with disabilities into able-bodied society.
Indonesia's struggling economy means that services and facilities for people with disabilities are minimal. The budget is incapable of providing welfare pensions. Nor can it provide adequate funds to meet the needs of people with disabilities in health, education, employment and public access. Infectious diseases, which could be prevented with vaccinations, contribute to disability, illness and death. For example, hearing loss can be attributed to iodine deficiency while cerebral palsy can result from unsafe birthing practices.
Furthermore, in Indonesia, there are few legal or social pressures to promote a non-discriminatory stance on disability. This is not to say that all people with a disability experience discrimination. In some communities, particular disabilities are perceived as a form of naturally occurring diversity and not as handicaps. In one community in Bali, for example, hereditary deafness is common and both hearing and hearing-impaired members of the community regularly use an ethnic sign language to communicate. Local cosmology and legend even incorporate devotion to a deaf god. Deafness is considered a part of the diversity of nature in this region, and deaf members of the community are integral to the shared community culture and ritual.
However cases such as these remain the exception. People with disabilities are more often considered an embarrassment. A significant barrier faced by people with disabilities is the belief that their disabilities are a punishment from God for sin. In Java and Bali in particular, the person with a disability is believed to be possessed by a supernatural spirit which must be exorcised. Disability is also often seen as a matter of fate. There is little empathy for people with disabilities for whom 'nothing can be done'.
This kind of judgment and stigma affect the lifestyles of people with severe disabilities. People with disabilities are generally not encouraged to develop personally. They are not considered valuable members of their community and many remain housebound, uneducated and unskilled. They generally do not earn a reliable income and therefore depend upon able-bodied family members to provide for their livelihood. These individuals are considered the responsibility of the family to be cared for as a dependent member of the family unit.
In extreme cases the family member is tied up at the back of the house, to keep them away from the outside world. This treatment is called dipasung - to be held in stocks. It is evident amongst families who cannot afford to send their intellectually or psychologically impaired child to an appropriate care facility. Instead, they are confined to a small hut in the backyard, tied at the wrists and ankles to a tree or heavy log. Here, they eat, sleep and defecate.
Community attitudes to the disabled were clearly reflected in an article published in the Indonesian newspaper Suara Merdeka in 2002. The article reported the death of a man with a psychiatric disability who had been tied up at the back of his parents' home in Cilacap, Java. The article did not condemn the family. Rather, it reported that the man was bound to keep him from harming himself and his neighbours, and to give the parents some relief from watching him closely.
That kind of future does Rini have in a society that has little room for people with disabilities? How will she care for her children, clean the house and do her rounds selling the snack foods she prepares nightly? There is no government-subsidised careworker to help her with housework and no government welfare to help her feed her family. Stairs lead to the only entrance to banks, post offices and supermarkets, and the uneven footpaths are interspersed with gaping holes.
For the quality of life of people with disabilities in Indonesia to improve, the government and NGOs need to provide affordable services and facilities which enable people with disabilities to participate in social and community life. Legislation needs to be put in place which protects their legal and human rights. Most importantly, however, social and cultural perceptions need to change to recognise the valuable contribution which people with disabilities can make to the community.
Janene Byrne (janene_byrne@hotmail.com) completed her Honours degree in 2002 at Monash University.