Wheelchair for 2 polio-patients

2002
Komang Arini is 22 and her brother Komang Sudike is 16. Both have paralysis in their legs as a result of polio causing deformities of their limbs, also known as contractures.

Arini can move using two crutches, provided that the distance is not too great. She can look after herself and can carry out day-to-day personal care independently.

Her brother Sudike has serious deformities of his hips, legs and feet. He can move only by crawling and almost never leaves the area immediately around the house. He needs help with personal care and is entirely dependent in a number of areas on help from other people. He is able to raise himself into a sitting position. Neither Arini or Sudike have been to school. The family believes that Sudike has learning difficulties. 

Request
The request is for transport for Sudike and for Arini. This would allow them to participate more in social life outside the home. The request was submitted by employees of APA Foundation.

Sudike

Request accepted
APA Foundation has second-hand wheelchairs with padded backs and seats but it has not yet proved possible to transport them to Bali as had been planned. Employees of the Foundation had, however, taken a wheelchair with them and so one was available. This wheelchair has adjustable leg-rests and arms and can be adapted to fit Sudike and Arini.

Since Arini can move with the help of crutches, the brother and sister could share and try out one wheelchair. Arini immediately proved able to move in the wheelchair unassisted.

Arini and Sudike come from a very poor family. Relations live on the adjacent land. Arini’s and Sudike’s family lives in a house at the back of the property. Access to the house is difficult because of overgrown plants. APA Foundation has made it a condition of supplying the wheelchair that the family clears the paths of plants, roots and stones and that the door to the house is widened. Without this, it will still be difficult to leave the plot with the wheelchair. This agreement has been set out in a contract.

Background information
Arini and Sudike come from a very poor family of six children. Both of them contracted polio at a young age and so suffer paralysis. Sudike also has serious contractures on his hips, legs and feet. He can use his arms and hands to crawl, even though he has limited strength. He has to be carried or dragged longer distances. As he is now 16, he has become too heavy for some members of the family and only his father, uncles and older brothers can carry him, on their backs. The family has no transport of its own and so Sudike rarely leaves home.

Sudike and his sister have never been to school. In addition, the family believes that Sudike has learning difficulties. It is not clear at the moment whether that is in fact the case although he does give the impression of being behind in his development. This may be related to the family’s approach. He needs help with some day-to-day activities but in fact his family does everything for him, speaks for him and takes all decisions without consulting him.

He may be able to act more independently. APA Foundation wants to address this in the future. It may be that use of a wheelchair will make Sudike more mobile and expand his horizons.

Sudike uses the wheelchair well despite the deformities of his lower body and he was very enthusiastic about it. Opportunities for further assistance to Sudike on his mobility and possible treatment of the contractures are being investigated in consultation with other organisations. The latter point, however, would require a lot of professional support to start with and, in due course, several operations followed by much after-care to maintain the actual and hoped for results. A vital condition for this is the desire and motivation of Sudike and his family. Arini has paralysis in both legs but can move around on crutches by leaning on the front of both feet and her toes. Partly as a result, her feet are deformed. She can put her feet flat on the ground, but cannot get enough support to integrate this with forward movement. She has too little strength in her legs to use a different type of crutch. Currently she works at home and earns a little money by crocheting hats which are bought and sold by others.

Arini can get into and out of the wheelchair on her own and move around in it. She is very happy with this. It is very important that the house and surrounding area are and remain accessible to the wheelchair if she is to be able to use it on her own, which is why agreements on this have been made with the family. The view of the Foundation is to give people their own responsibility for the proper use and maintenance of equipment.

2005
Arini has used crutches to move throughout her life and is very proficient in this. Following examination by Marieke de Wit, the use of crutches currently seems the most suitable way for her to move around given her physical situation and abilities and the housing and living conditions. Arini used home-made crutches to move around. These were uncomfortable to use and not suitable for her height.

APA Foundation has provided her with a new pair of adjustable crutches.

Arini is taking part in the retail project. (See also IB 0405 retail project). In the past she had orders for colourful, crocheted hats, but was paid very little. Other people helped her with the crocheting. This source of income stopped, however, as she did not receive any more orders. And this happened when her father has been unable to walk or work for a while following a fall from a palm tree. As a result, the family is even more dependent on the income of the grown-up and younger children. As a try-out, Arini has started decorating wooden dolphins made by local woodworkers and bought for her by APA Foundation. It was agreed after discussions that she should make something else as the market for crocheted hats is currently not very large. The idea is that Arini will herself decide which articles to make and sell.