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INTRODUCTION TO PART 3 - Disabled Village Children - Page 543
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INTRODUCTION TO PART 3
CHAPTER
56Making Sure Aids and Procedures
Do More Good than Harm
525
When I (David Werner) was about 10 years old, I was taken to a doctor because I
was having problems with my feet. I kept falling over things and spraining my ankles.
No one knew yet that these were early signs of a progressive muscular atrophy.
The doctor examined my feet. They were somewhat weak and floppy, so he
prescribed arch supports. An ‘orthotist’ across town would make them.
When the arch supports were ready, the orthotist put them on my feet. “Do they
hurt?” he asked. “No,” I said. So I was sent home with instructions to wear them every
day.
I hated the things!—not because they hurt, but because it was harder for me to
walk with them than without them. They pushed up on my arches and bent my ankles
outward. I fell and sprained my ankles more than ever.
I tried to protest, but nobody listened to me. After all. I was only a child. “You have to
get used to them!” I was told. “Who do you think knows best—you or the doctor?”
So mostly I suffered in silence. I took the arch supports out of my shoes and hid
them whenever I could. But when I was caught I was punished. I was made to feel
naughty and guilty for not doing what was ‘best’ for me.
Several years later, as my walking continued to get worse, I was prescribed a pair
of metal braces. They held my ankles firmly, but they were heavy, uncomfortable,
and made me feel more awkward than ever. I hated them, but wore them because I
was told to.
One holiday I took a long walk in the mountains. The braces rubbed the skin on
the front of my legs so badly that deep, painful sores developed. I refused to wear
them again.
It was not until many years later, long after I had begun to work with disabled children,
that a brace maker and I figured out what kind of ankle support would best meet my
needs. So now I use lightweight, plastic braces that provide both the flexibility and
support that best suit me.
When I look back, I realize that the doctor did not know more about what I needed
than I knew. After all, I was the one who lived with my feet! True, at age 10, I could
not explain the mechanics and anatomy for what was happening. But I did have a
sense of what helped me manage better and what did not. Maybe if the adults who
were so eager to help had included me in deciding what I needed, I might have had
aids that better met my needs. And I might not have felt so guilty and naughty for
expressing my opinion.
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