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PART 1
WORKING WITH THE CHILD AND FAMILY
Information on different Disabilities
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CHAPTER 1
INTRODUCTION TO PART 1
Making Therapy Functional and Fun
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| Most disabled people in the
world live in villages and poor communities where they
never see a 'rehabilitation expert' or 'physical
therapist'. But this does not always mean that they have
no 'rehabilitation' or 'therapy'. In many villages and
homes, family members, local craftspersons, traditional
healers, and disabled people themselves have figured out
ways for persons with disabilities to do things better and
move about more easily. We have seen examples where
local carpenters, tinsmiths, leatherworkers or blacksmiths
have put together simple crutches, carts, wooden legs and
other aids. We know parents who have figured out ways of
adapting daily activities so that their children can help
do farm work or housework-and at the same time get much of
the exercise (therapy) they need.
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| Two words often used
by people who work with disabled persons are
'rehabilitation' and 'therapy'.
Rehabilitation means
returning of ability, or helping a disabled
person to manage better at home and in the community.
Therapy basically means treatment.
Physical therapy-or physiotherapy-is the art
of improving position, movement, strength, balance,
and control of the body. Occupational therapy
is the art of helping a disabled person learn to do
useful or enjoyable activities.
We speak of 'therapy' as an art
rather than a science because there are many different
beliefs and approaches, and because the human feeling
that goes into therapy is as important as the methods.
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| Sometimes the 'rehabilitation' that
families and communities figure out by themselves works
better in their situation than do methods or aids
introduced by outside professionals. Here are 2 examples: |
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- In India, I met a villager who had lost a leg in a
house-building accident. Using his imagination, he had
made himself an artificial leg with a flexible foot out
of strong wire with strips of an old cotton blanket for
padding. After several months, he had the chance to go
to a city where a professional 'leg maker' (prosthetist)
made him a costly modern fiberglass leg. The man tried
using the new limb for a couple of months, but it was
heavy and hot. It did not let his stump breathe like his
'wire cage' leg. And he could not squat to eat or do his
toilet, as he could with his homemade leg. Finally, he
stopped using the costly new leg and went back to the
one he had made. For the climate and customs where he
lived, it was more appropriate.
- In a small village in Mexico, over the years, the
community together with its deaf citizens has developed
a simple but expressive 'sign language' using their
hands, faces, mouths, and whole bodies to communicate.
As a result, children who are born deaf quickly and
gracefully learn to express themselves. They are well
accepted in the community, and some have grown up to
become creative and respected craftspersons. This
village method of 'total communication' allows the deaf
children to learn a useful language more quickly,
easily, and effectively than does the 'lip reading and
speech' method now taught in the cities. For children
who are born deaf, attempts to teach only
lip-reading-and-spoken- language often end in cruel
disappointment (see Page 264).
The 'special educators' in the cities could
learn a lot from these villagers. |
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| Disabled children-if
allowed-often show great imagination and energy in
figuring out ways to move about, communicate, or get what
they need. Much of what they do is, in effect, 'therapy',
artfully adapted for and by each child. With a
little help, encouragement, and freedom, the disabled
child can often become her own best therapist.
One thing is certain: she will make sure her therapy is
'functional' (useful), always changing it to meet her
immediate needs. A disabled child, like other children,
instinctively knows that life is to be lived NOW and that
her body and her world are there to be explored, used, and
challenged. The best therapy is built into
everyday activities: play, work, relationship, rest, and
adventure.
The challenge, then, for health workers and parents (as
well as for therapists), is to look for ways that children
can get the 'therapy' they need in ways that are easy,
interesting, and functional.
This takes imagination
and flexibility on the part of all those working with
disabled children. But mostly, it takes understanding.
When family members clearly understand the reasons for
a particular therapy and the basic principles
involved, they can find many imaginative ways to do
and adapt that therapy. |
'Physical therapy' to
improve control of the head, strength of the back, and
use of both arms and hands together: |
| (a) in a city clinic |
(b) in a village home |
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| Appropriate therapy helps the child to
enjoy himself, be useful, and take part with others,
while mastering the skills for daily living.
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Physical therapy and rehabilitation
techniques have been developed mostly in cities. Yet most
of the world's disabled children live in villages and
farms. Their parents are usually very busy growing the
food and doing the chores to keep the family fed and alive
from day to day. In some ways, this makes home therapy
more difficult. But in other ways it provides a
wide range of possibilities for exciting therapy in which
the child and his family can meet life's needs together.
Here is a story that tells how therapy can
be adapted to village life.
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Maricela lives in a small village on a river. She has
cerebral palsy. When she was 4 years old, she was just
beginning to walk. But her knees bumped together when she
tried to take steps. So she did not try often. Also, her
arms and hands were weak and did not work very well. |
| Her family saved money and
took Maricela to a rehabilitation center in the city.
After a long wait, a therapist examined her. He explained
that Maricela needed to stretch the muscles on the inner
side of her thighs, so her knees would not press together
as much. |
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He recommended that her parents do
special exercises with her, and that they buy a special
plastic seat to hold her knees wide apart. |
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He said she also needed exercises to
strengthen and increase the control of her hands and arms.
He suggested buying her some special toys, game boards,
and aids to practice handling and gripping things. |
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Maricela's family could not afford these
costly things. So back in her village her father used
whatever he could find to make similar aids at low cost.
First he made a special seat of sticks. |
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Later he made a better seat with pieces
of wood, and an old bucket to hold her legs apart. |
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Then, using a board, corn cobs and rings
cut from bamboo, he added a small table so that she could
play games to develop hand control. |
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He also made a hand exerciser out of
bamboo. |
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At first, while they were strange and new, Maricela used
her special seat and played with her special toys. But
soon, she got bored and stopped using them. She wanted to
do the things that other children did. She wanted to go
with her father and brother to the cornfield. She wanted
to help her mother prepare food and wash the clothes. She
wanted to be helpful and grown up.
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So she broke her special toys
and refused to sit in her special seat. Her parents were
furious with her-and she loved it! She would sit for hours
with her knees together and her legs bent back. Walking
began to get more difficult for her, so she did not walk
much.
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Her parents then visited a small
rehabilitation center in a neighboring village. The
village team suggested that they look for new ways to help
Maricela keep her knees apart and improve control of her
arms and hands-ways that would be exciting and help her to
develop and practice useful skills together with the rest
of her family. Here are some of the ideas that Maricela
and her parents came up with: |
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When she was good (and sometimes even if
she was not) her father would let her help shell corn with
him and the other children. Because she had trouble
holding the corn and snapping off the grain with her
fingers, her father made a special holder and scraper. |
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The basket between her legs held her
knees apart, and the shelling of the corn strengthened her
arms, gave her practice gripping, and improved her
coordination and control. It was hard, important work
that Maricela found she could do. And she loved it! |
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Maricela's mother sometimes invited her
to help wash the clothes at the river. Maricela would sit
at the river's edge with a big ' washing rock' between her
legs. She would wash the clothes by squeezing and beating
them against the rock- just like her mother. The rock
kept her knees apart and the squeezing and banging
strengthened her hands and improved her control. But what
mattered was getting the clothes clean. it was hard work.
But she found it easy-and fun! |
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Coming back from the river, Maricela just
had to walk. It was too far to crawl. And besides, she had
to help her mother carry back the washed clothes. This was
hard, but she tried hard, and could do it! Carrying the
pails of clothes helped her learn to walk without bending
and jerking her arms so much.
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To help Maricela grip the handle of the
pail easier, her father wrapped a long strip of old
bicycle inner tube very tightly around the handle. But
when Maricela's hand sweated, the smooth rubber got
slippery. So her father wound a thin rope around the
rubber. This way, Maricela could hold it better. |
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As time passed she learned how to carry a
bucket of clothes on her head-then a bucket of water. To
do this took a lot of practice with balance and control of
movement. She just had to keep her legs farther apart to
keep her balance. Her mother was almost afraid to let
her try carrying the water. But Maricela was stubborn- and
she did it! Maricela also discovered that if she floated a
gourd dipper (or a big leaf) on top of the water, it
helped keep the water from splashing out. |
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So, by trying different things, Maricela's
family, and Maricela herself, learned ways to create
therapy and aids that were effective, useful, and
enjoyable.
Maricela did learn to walk better, and to
use her hands and arms to do many things. But this took a
long time. Sometimes she would try something that was too
hard, and almost give up. But when her little brother
would say she could not do it, she would keep trying until
she succeeded.
Even when Maricela liked doing something,
because she was a child she would get bored and not keep
doing it for long. Her parents always had to look for new
ways for her to get her therapy. It became a challenge and
a game for them, too. |
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Of course, Maricela loved horses. So her
father made her a rocking horse out of old logs, branches
of trees, and a piece of rope for a tail. |
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Her father noticed that she was beginning
to walk on tiptoe, so he made special stirrups for the
rocking horse. With these, when she rocked, her feet
stretched up in a more normal position. |
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The rocking horse kept her knees apart,
strengthened her hands, and helped her improve her
balance. Maricela loved her horse and sometimes rocked for
an hour or more. When she got off, it seemed she could
walk better.
After Maricela had learned to ride the
rocking horse, she wanted to ride the real thing. She
begged and begged. So one day her father let her ride with
him to the cornfield on his donkey. He suggested she ride
in front of him where he could hold her. But she insisted
on riding behind, like other children do. |
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So he fixed some stirrups and let her
ride behind. Her legs were spread wide and she hung on
tightly. It was excellent therapy - but nobody called it
that. |
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In the cornfield she helped her father
and brother clean the weeds out from among the young corn
plants. That was good for the young plants-and for her,
too! But after several trips to the cornfield on the
donkey with her father, Maricela begged him to let her
ride alone. He was nervous, but he let her try. |
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She could do it-and what confidence it
gave her! Soon Maricela was preparing lunch for her father
and brother and taking it to them in the cornfield-all by
herself. Now she found she could do many other things she
never thought she could. Although she was still awkward,
and at times had to look for special ways to do things,
she found she could do most anything she wanted or needed
to. |
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| The example of Maricela's
'therapy' cannot and should not be copied-but instead,
learned from. In fact, the story suggests that no
approach to rehabilitation should be copied exactly.
Our challenge is to understand each child's needs, and
then to look for ways to adapt her rehabilitation
to both the limitations and possibilities within her
family and community. We must always look for
ways to make therapy functional and fun. Recently, some
'appropriate technology' groups have tried to adapt
standard 'rehabilitation aids' to poor rural communities.
However, many of their designs are modeled fairly closely
after the same old city originals, using bamboo and string
instead of plastic and aluminum. Some of these low-cost
designs are excellent. But more effort is needed to make
use of the unique possibilities for rehabilitation and
therapy that exist in the village, farm, or fishing camp.
Maricela's family did just this. The basket of corn,
the washing rock, the rocking horse, and the donkey all
became 'therapy aids' to help Maricela spread her spastic
legs, and at the same time, to take part in the life of
her family and community.
But not every family shells corn in baskets, washes
clothes on rocks, or has a donkey. And not every disabled
child has Maricela's needs and strengths. So we repeat:
| We should encourage each
family to observe the specific needs and
possibilities of their disabled child, to understand
the basic principles of the therapy needed, and then
to look for ways to adapt the therapy to the child's
and family's daily life. |
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