音声ブラウザご使用の方向け: SKIP NAVI GOTO NAVI

Nothing About Us Without Us
Developing Innovative Technologies
For, By and With Disabled Persons

Part One
Freedom and Development, Not Confinement



A Wheelchair Seat Helps Dora
Overcome Chronic Depression

DORA is a school teacher from Guadalajara, in her mid-30s. Until she was about 25 years old, she was energetic and full of life. Then she began to develop muscle weakness and spasticity first in her legs, then in her whole body. Diagnosed as multiple sclerosis, it was at first only a nuisance; then it became disabling. For a while, she used a wheelchair. But a huge pressure sore formed on her left buttock. After that, she had to remain in bed. Her health worsened until she was very thin and pale. Doctors said her condition was too delicate to risk surgery to close the sore. Despite medical attention, counseling, and a supportive family, her condition continued to worsen. At last - on an off chance - her mother took her to PROJIMO, 300 miles away.

A huge pressure sore formed on her left buttock.

When Dora arrived, the PROJIMO team welcomed her and did their best to respond to her needs. By then, her physical condition was life-threatening. The huge pressure sore had destroyed all the skin and flesh of one buttock, leaving the entire butt-bone (ischial tuberosity) exposed.

Long-term infection and oozing from the sore had left Dora severely anemic and protein deficient. But, her state of mind was even more critical than her physical condition. Dora was deeply and chronically depressed. She had spent most of the last 4 years, day and night, lying in a bed in her parents' home. Her doctors had forbidden her to sit in a wheelchair, or even to sit up in bed, because of the enormous pressure sore on her buttock.

First Steps

On talking with Dora and her mother, Mari realized that, in order to improve her condition, one of the first tasks was to help her to overcome her depression.

"Have courage! We will figure something out."

"I don't want to go on living if I have to spend the rest of my life cooped up and lying in bed." Dora said. "But the doctors say I have no choice. They tell me I have to get stronger before they can operate on my buttock. But I just keep getting weaker!"

Dora looked at Mari with tears in her eyes. "If I could only move about like you do in a wheelchair! Then I could go outside, visit friends, do lots of things!"

"Have courage!" said Mari. "Together we'll do our best to figure something out."

Mari and the PROJIMO team met with Dora and her mother to look for solutions. To improve her physical health, she would need an iron-, energy-, and protein-rich diet. But she was so unhappy that she ate almost nothing. Everyone agreed that, for Dora to improve physically, it was important for her to improve her feelings about herself and her life. She needed a renewal of hope - and a sense that life was worth living.

Dora's first wish was to get out of bed and move about: in other words, mobility. But how was this possible with the giant lesion on her buttock? "Her sore will never heal with her lying on it. She's too weak for surgery, and she's so unhappy that her overall health keeps deteriorating," said Mari. "What to do?"


The Gurney That Didn't Help

"I can not breathe! Put me back in bed."

One idea the team had was to arrange for Dora to lie face-down on a wheeled cot, or gurney (trolley). They have used gurneys for many spinal-cord injured persons with pressure sores. Lying face-down takes the pressure off the sores. Also, actively moving about on a gurney can lift people's spirits, improve circulation, and speed healing. (See Chapters 37 and 38.)

Dora was eager to try. But, lying on her stomach proved uncomfortable because of her spasticity and contractures. Also, as severely anemic as she was, she had trouble breathing. Struggling for air and soaked in sweat, she begged sadly, "Put me back in bed."

After this failed attempt, Dora was more discouraged than ever. Her mother was ready to take her back to Guadalajara. Another meeting was held. Dora kept repeating her wish: "If only I could move about in a wheelchair!"

An Unusual Wheelchair Seat

Wheelchair for Dora.

Impossible as it seemed, the team set about designing a wheelchair for Dora that would put no pressure on the buttock with the sore. Mario - who has had severe pressure sores himself (see page 157) - built a plywood seat to fit inside a standard PROJIMO-built Whirlwind wheelchair. The plywood frame helped to hold her legs and feet in a good position.

A large hole.

A large hole was cut in the plywood seat to fit directly under Dora's destroyed buttock, so that air could freely circulate to the bandaged sore.

Mario made a special cushion out of layers of cardboard (see page 157). He also put a hole in the cushion under the left buttock.

Sides of the seat extended far enough forward.

The sides of the seat extended far enough forward so that padding could be placed to help Dora sit upright, even with all her weight on one buttock only.

Her chair can be tilted far back.

The high seat-back holds up Dora's head when the chair is tilted back. This way, her chair can be tilted far back at frequent intervals. This is essential to prevent new pressure sores on the healthy hip, which supports her full weight when seated.


"It works!" Dora tried the new seat and was enthusiastic. It took some time to arrange padding next to her thighs and flanks so that she could sit fairly straight and comfortably. To protect the healthy buttock, the chair had to be tilted back for a while every 10 or 15 minutes.

With the basic chair completed, Dora and the team began to look for ways to help her to function better. They equipped the seat with a removable table so that she could read and write, do manual activities, and feed herself.

However, feeding herself and drinking from a glass was a problem. The combination of spasticity, weakness, and the tremor of her arm made it hard to lift food or drink to her mouth without missing her mouth or spilling it.

An Elbow Stabilizer to Facilitate Eating and Drinking

Inez (who assists people with physical and occupational therapy) helped Dora to experiment with different devices and positions to make eating and drinking easier. Dora found that when Inez held her elbow firmly on the back corner of the table, she had more control. So the next job was to figure out a simple way to stabilize her elbow without someone having to hold it in place.

In the garbage bin, Inez found a small, broken, foam-plastic packing box, with an inside width of about 3 inches (10 cm). With a pocket knife, he fashioned the box to fit around Dora's elbow. He attached it with Velcro (self-sticking but removable tape) to the back corner of Dora's wheelchair table.

By inserting her elbow in the foam-plastic box attached to her table, Dora found she could eat more easily and even drink without much spilling. She was delighted, It was the first time in 4 years that she had been able to eat and drink without assistance.

Dora foung that when Inez held her elbow firmly on the back corner of the table, she had more control. Broken foam-plastic packing box in the garbage bin. Dora is now able to eat and drink without assistance by inserting her elbow in the foam-plastic box.

Not Her Sore, but rather Her Spirit was Healed

Dora and her mother stayed at PROJIMO for several weeks. By the time she left she was eating better, gaining weight, and looking healthier. She felt much more positive about her own existence. The pressure sore had not even begun to heal, and probably never would without extensive surgery. However, if Dora's health continues to improve, surgery at some time may be possible.

But something more important than healing the sore was the healing of her spirit. Her mother said that she was again beginning to see some of the old spark and joy of life that had made Dora such a good teacher. First things first.


NOTE: For innovative ideas on prevention and treatment of pressure sores, see Chapters 27, 28 and 38. For overall basic information on pressure sores, see the book, Disabled Village Children, by David Werner.


Joel walks with his crutches and a parapodium. Joel, who has spina bifida, learns to walk using a wooden walker and a "parapodium" (standing frame for walking) made at PROJIMO.

Go back to the CONTENTS

Nothing About Us Without Us
Developing Innovative Technologies
For, By and With Disabled Persons
by David Werner

Published by
Workgroup for People's Health and Rights
Post Office Box 1344
Palo Alto, CA 94302, USA