Hesperian Health Guides
What Is More Important—Appearance or Function?
HealthWiki > Disabled Village Children > Chapter 56: Making Sure Aids and Procedures Do More Good Than Harm > What Is More Important—Appearance or Function?
When a choice needs to be made between an aid that is more useful and one that is more attractive (or perhaps no aid at all), it is important to consider the cultural factors and to respect the wishes of the child and her parents. Here is another story.
A HELPING HAND FOR SRI
When Sri was 13 years old, one day she was helping her father at a small sugar-cane mill that was pulled round and round by a mule. Her hand got caught in the gears of the mill and was crushed. It had to be cut off at the wrist.
The stump healed quickly, but Sri’s spirit did not. It seemed as though it, too, had been crushed. She had been a happy girl. Now she just sat around. She did not help with housework, and refused to go outside. She kept her stump hidden in her clothing or behind her back.
Sri’s family worried about her. They took her to a specialist in the city who examined her and suggested an artificial limb. She gave Sri the choice between hooks, which would be useful, and an artificial hand, which looked more natural but would be less useful. The specialist encouraged her to choose the hooks, and explained how well she could learn to use them. But Sri picked the hand.
The hand was very expensive, but it looked almost real, and the family agreed. Her father had to sell his mule to pay for it, and was in debt for more than a year.
As time went by, however, Sri never really used her new hand. She tried it on a few times, but it seemed cold and dead. One day when her mother took her to the market wearing the hand, Sri thought everyone was looking at her. Two little boys, who had been her friends, pointed at the hand and laughed. She never wore it again.
One day a village health worker visited Sri’s home. She saw that everyone was busy working and doing things except Sri, who sat quietly in the corner.
After talking with her family, the health worker suggested that they make an effort to treat Sri just like the other children. “Encourage her to help with work, and to take part in all your activities,” she said. “Don’t pretend that Sri’s hand isn’t missing. Just accept her as she is. Let her know that you love her and need her help as much as before.”
So instead of feeling sorry for Sri, or letting her just sit and feel sorry for herself, her family began to treat her as they had before the accident. They asked her to help with the housework, prepare the meals, and care for the baby. At first Sri was unwilling and found everything difficult. But soon she learned how to do many things by using her good hand and her stump. She began to gain new confidence in herself, and in time started going to the market alone. At first, people took notice of her missing hand, or whispered. “Oh, poor thing!” But when they saw how well she did things they soon stopped feeling sorry for her and began to treat her like any other person.
| NO | YES |
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| It is important that the family not let a person with disabilities be separated from daily work and activities. | Instead, look for ways to let a person with disabilities help as best she can. |
When trying to decide about an aid, we need to seek the balance between usefulness and attractiveness that helps the child fit in best with their family and community.
Rehabilitation experts often place great importance on usefulness, or function. But acceptance in the community is also very important. In some places it may be more important. So, before trying to convince a child like Sri to accept an aid that will make her deformity more noticeable, we must consider how this could affect her. In some communities, people will soon accept both the child and her aid. But in some societies, people have beliefs or deep fears about a person whose body is “incomplete.” In other societies, amputation of a hand has traditionally been the punishment, and sign, of a thief. Or a girl who is seen as “defective” may not be likely to find a husband. So, it may be socially very important for her to have an aid that looks real or is less noticeable, even if it does not function. (If the family can afford them, sometimes the best solution is 2 artificial limbs—hooks for home use or work, and a hand for dressing up and going out.)
It is, of course, unfortunate that a child feels ashamed or thinks she has to hide her disability. We must work for greater understanding. But people do not change their attitudes quickly. Often the child and her parents have good reasons for their fears, and we must learn to accept them. However, we must also help the child, her family, and the community to become more accepting of the child’s disability and to provide as many opportunities for the child as possible.
We need to help the child find courage. A child with a new disability will often be afraid to go out into the community, or back to school. And other persons or children may at first take notice and feel sorry for her—or even tease her. But if she can be helped through this first difficult period, usually other people and children will soon get used to her difference and accept both it and her. As more people with disabilities find the courage to go out into the community, it will be easier for those who follow, because people will become more open and accepting.
In the story of Sri, the rehabilitation specialist tried to solve her problem by giving her an artificial limb. Her family spent a lot of money on it. But the new hand did not solve her problem. She never really accepted or used it. Her problem, which was partly emotional, was finally solved by the whole family helping her to join them again in daily activities, and to gain new confidence in herself.
This is very important. Too often we try to find technical answers to problems that are mostly personal, social, or emotional. So we turn to aids and equipment. Sometimes these are needed. But sometimes they are unnecessary, too costly, or make life more difficult for the child (even though they may be of some help physically). So ...
Before deciding if a child needs aids, braces, surgery, or equipment, and what kind, carefully consider the needs of the whole child within her family and community.