The world is full of devices that make daily tasks easier. For the disabled, assistive devices make daily tasks possible. Marian Bang spoke to the Disability Action Research Team (DART) who see research into these as far more than just reports on paper. Rather they are a tool for empowering both those with abilities and their care-givers.
Studies released by the KwaZulu Natal Department of Health in February this year showed that in 16 hospitals across the provinces there was a backlog of more than 5 000 people awaiting assistive devices - including walking aids, wheelchairs, hearing aids and spectacles. Approximately 85 in every 1 000 people in the province have some disability - this may be sight or hearing related and includes those who have fits.
Until recently in the Western world, the attitude towards people with the abilities was often one of exclusion and marginalisation. Faced with the so-called "normal" world disabled people have been expected to fit in as best as they can. Even the term " disabled" - while preferable to a host of other terms - infers a negative.
Sue Philpott, an occupational therapist and member of Dart, believes that as South Africa moves towards building a new society - one in which differentness can be celebrated - we can begin to alter our own perceptions of what is "normal" and attempt to make our environments more enabling and inclusive for those with disabilities.
Dart was formed when the organisation, Disabled People South Africa, saw the need to research the availability of rehabilitation and assistive devices - including glasses, wheelchairs, white canes, prostheses, crutches and calipers - in KwaZulu Natal. Dart's principal researcher, occupational therapist Dr. Pam McLaren, was then appointed and joined by Philpott and research intern Richard Hlope, who had previously worked as assistant co-ordinator of the University of Natal's Community Internship Programme. The team has begun research which focuses on three groups - those who use, allocate and build assistive devices. "Empowering a disabled person is not just a case of getting them a wheelchair, for example," says Philpott. "We need to consider carefully what would happen when their wheelchair needed repair. Could they repair it themselves, or would they have to spend time and money traveling to hospital to have it repaired? " Sometimes a disabled person has been given a wheelchair but no cushion and this can result in a lot of discomfort. These are details which can often be looked by those allocating assistive devices. Our work is aimed at listening to those who use, allocate and build the devices in an attempt to improve the channels of communication between the three groups.
"Issues that contribute to problems faced by disabled people in include a lack of awareness of the options available. Unequal access to assistive devices and bureaucracy. "Ideally, disabled people could begin to be involved in designing and making their own assistive devices, using affordable and appropriate technology." Hlope believes the key to empowering disabled people is in the demystifying and de-institutionalising of the research.
"Often disabled people have been excluded from participating in research on the basis that they are illiterate. By finding out what disabled people need and disseminating the information widely, we can begin to build up communities and maximise resources so that technology is not only available but also appropriate." Hlope has begun a pilot focus group at the Zamani Self Help Center in Edendale, where disabled people have begun to discuss their needs, problems and possible solutions.
McLaren sees Dart's work as a step along the road to enabling disabled people to analyse their own needs and choose the most appropriate ways in which those needs can be met. "We are just not researchers. We are orientated towards service and action, and we want to see our work making a difference," she says.
Dart has a number of resource materials, and hopes to put groups with similar aims in touch with each other. For further information contact the Dart office on (0332) 305 693.
Source: The Natal Witness, Friday, July 19, 1996.