ONE IN TEN

A PUBLICATION OF REHABILITATION INTERNATIONAL/UNICEF COLLABORATION
ON CHILDHOOD DISABILITIES

Volume 19 - 1998
English Version

Appropriate Technology for Children with Disabilities

- EDITOR'S NOTE -

What is appropriate technology? This issue of One in Ten presents projects that are working to simplify assistive technology so that it can be produced locally at lower costs and reach more children and youths with disabilities in low income countries. Many would say this is the essence of appropriate technology: creating the conditions for self-reliance and bringing costs down to the level where most of those who need it can afford it. Others would add the element of cultural appropriateness-e.g., if family life is lived on the floor, then the disabled child should be enabled to join in. Still others feel strongly that technology is not really appropriate until its design is flexible enough to respond to individual adaptation. The sub-theme of this issue is perhaps, ingenuity. Whether we are looking at low cost equipment to prevent disability of new-borns in hospitals, computer software that is accessible to blind students, or special seating and wheelchairs for children with mobility impairments-there is no shortage of good ideas and ingenuity. What is still missing is an international network of exchange so that these and the thousands of other good ideas out there can be disseminated, adapted and widely applied.

IN THIS ISSUE:

" Children and Appropriate Technology - 2
" A Child is Not a Sack of Potatoes - 3
" Low Cost Disability Prevention in Brazil - 7
" Assistive Device Network in Bangladesh - 10
" Children's Wheelchairs in Central America and Africa - 11
" Low Cost Brazilian Computer Software for Blind People -15
" Finding a Middle Way Between High and Low Technology - 18
" Brief Reports - 21
" Selected Resources on Appropriate Technology - 23

Assistive Technology for Children: Some Universal Considerations

By Tomas Lagerwall, Swedish Handicap Institute

The Ideal Situation

When Peter came to school the first day, he soon made friends.
"Wow, your car is great. Can I go for a ride with you?" shouted Max.
Peter's electric wheelchair in blue metallic painting with lights and a horn attracted everybody. He was really cute in his wheelchair.
Peter's assistant was in the background letting the kids play by themselves. He and Peter's parents had met with the teacher a week before Peter's first day at school and the teacher had prepared the children. The teacher had also met Peter and they had together looked at everything, including the accessible bathroom and the new ramps.

A More Typical Situation

The story could have been different. Peter could have arrived in school in a wheelchair that was too big for him - a bad copy of a wheelchair for an adult - pushed by his mother. The other kids were not prepared and the school not accessible. Peter felt horrible in his ugly wheelchair. The other kids called him "CP" although he did not have Cerebral Palsy, but had been in an accident.
What was the big difference between Peter in the first case and Peter in the second case? The attitudes of the adults were of course an important factor. Peter's attractive wheelchair and the fact that he was proud of himself in it are crucial. He had also visited the school before and knew that it was accessible.
Many girls and some boys play with the doll called Barbie. Barbie's friend Becky uses a wheelchair. This doll helps children gets used to the fact that some people have disability and that their assistive devices are part of their life. There are also dolls and puppets with disabilities being produced in low-income countries. These toys that encourage acceptance can have a very important influence on children's attitudes towards disability.
Whether a device for a child is good or not depends primarily on the child's acceptance. If the child likes the device it is going to work. The child's view of what is a good device is in many cases different from adults.
Devices for children are often divided into different categories according to Activities of Daily Living areas, such as dressing, eating and hygiene. Another way to look at devices is to take into account the child's social, psychological, motor and intellectual level. Playing is a fundamental part of a child's development.

Philosophy is the Same for Low-Income Countries

The above may sound OK for a rich industrialised country, but what to do in low-income countries with scarce resources? The philosophy is the same:
· Assistive devices for children should not be smaller copies of devices for adults, but should take into account children's special needs.
· All children need to play, including children with disabilities. Assistive devices for children should stimulate and support playing. They should be functional and not easily damaged or broken.
· The design aspect is always important, but particularly important in devices for children.
· As children grow, the devices should adapt to their length and width. Children of the same age may be different. If the devices are made flexible it is easier to make them suit individual needs.
Let us imagine the following scenario in a low-income country:
Petra comes to school in a nice wheelchair made at a local workshop in a nearby town. Her older sister accompanies her. Their father has made a ramp to the classroom and a bathroom has been adapted for accessibility. Her red wheelchair is solid and easy to manoeuvre so that she can play with the other children. Petra has many friends in the class and loves going to school.
This may sound like a dream, but it is not unrealistic. It is just up to us to make the dream a reality!

A Child is Not a Sack of Potatoes

By David Werner, HealthWrights - Workgroup for People's Health and Rights

(Condensed from Nothing About Us Without Us: Developing Innovative Technologies For, By and With Disabled Persons)

Wheelchair riders often protest when people say they are "confined to a wheelchair" or "wheelchair bound." For them, a good wheelchair is not confining but liberating. It frees them to go where they want and to do what they choose. It permits them to accomplish more than they could do otherwise.
The same is true-or should be-for special seating. It should not be confining, but liberating. The purpose of a special seat should not be to rigidly hold the child in a position that looks "good," but rather to help the child to learn to sit in a position that is beneficial. A beneficial position is not necessarily one that looks normal. Rather, it is one that helps the child to stay healthy and to do what she wants or needs to do more easily and effectively.
Usually the best special seat is one that provides the least amount of support needed to help the child do the most for herself.

A child is not a sack of potatoes

A child is not a sack of potatoes. Unfortunately, however, a lot of special seating is designed to hold children as if they were no more than sacks of potatoes.
Special seating, at its best, does not simply hold a child in a desirable position (although this may be a starting point for some children). It can sometimes help a child to improve balance, sit with less need of support, and learn new skills. In this chapter we will see examples of ways that seating can be designed for and with specific children to help them to gain better head control, discover the usefulness of their hands, observe their surroundings, dress themselves, and even use their leg muscles in preparation for walking.

Special Seating: Fit or Misfit?

Special seating can be an important rehabilitation technology if it helps a disabled child to sit in a more self-controlled, more comfortable position, or if it enables her to do more things or learn new skills. However, in many programmes you will see special seats that do more harm than good. The problem is not lack of concern. Often a lot of time, energy, and care have gone into making the seat. The crafts-person (perhaps a local carpenter) may be highly skilled. But two problems are common: First, the design was selected from an overly simplified "how to do it" book, and the seat is not suited to the child's particular needs. (This is especially true for children with cerebral palsy, whose combination of needs vary greatly.) Second, the seat is too big for the child.
Note that both of these seats are too big for these children. In the first, the child's knees do not reach the front edge of the seat, so her unsupported feet stick out in front. The second seat could fit 2 such children, side by side. In these oversized seats, the children tend to slip forward. As their hips extend (get straighter), the spastic stiffening of their bodies increases. The result is a poor position, discomfort, and loss of control for eating or play. Such misfitted seats can do more harm than good. Using a standard child's chair, or simply sitting the child in the corner, is likely to work better.
Above are a few examples of seating from the book, Disabled Village Children. Each seat works well for certain children... but not for others! Especially for children with cerebral palsy, it is best to use a trial and error approach.
The best guide is what makes the child happy and helps her do things better.
There are three main reasons why special seating is often inappropriate:
· There is a tendency to place too much emphasis on construction of the equipment and not enough on making sure it meets the child's specific needs and fits her well. Special seating, like all custom-made disability aids, should be approached through an experimental problem-solving process, by trial and error.
· A lot of instructional materials, especially those for community-level work, show pictures of a few special seats. But they lack adequate instructions for measuring the child or for translating those measurements to the seating design.
· In instructional materials, designs are often misleading or inappropriate.
If a seat is built precisely as in a drawing, it may not be appropriate for the child shown (or, in some cases, for any child).
For example, here is a drawing from a brochure produced by a CBR training centre in Asia. At first glance, the special seat appears well-fitted and appropriate. But look closer. Although it matches the child's size more closely than do the seats in earlier photos, the seat presents many problems for the child that is shown.
The problems are clearer when we look at the same seat from the side, as shown here:
· The sides of the head-rest are too far forward. They block the child's vision to the sides.
· The seat belt is too high. It causes, rather than prevents, slumping.
Also, the belt provides no sideways stability because it passes around the sides of the chair.
· The seat is too deep. The knees bent over its front edge force the child to slump with rounded back and extended hips: a tiring and harmful posture. It could increase spasticity.
· The back of the chair pushes the child's head forward, lowering his line of vision. This makes it harder for him to watch activities around him, which can delay his development.
· Danger of falling. The chair tips back slightly but with no safety supports to prevent it from falling over backward. This is especially risky because the feet are on the ground. (There is no footrest.) A child with spasticity could easily push the seat over backwards.
If a child has spasticity, the slouched position that the seat provides could trigger backward stiffening of the body, thus requiring the seat-belt to keep him in the seat. A few basic principles of seating and positioning of such children are shown below in simplified form. (Side supports and armrests, which may also be needed, are not shown in these drawings.)
To find out which of these-or other-options is likely to work best for an individual child, experimentation is necessary, paying attention to the child's wishes and responses.

A Great Variety of Seating Possibilities

When planning a special seat for a child, imagination is required to design and adapt a seat that:
· meets specific needs of the child (and whoever cares for her);
· fits into the local social and physical environment;
· is low cost, so the family or community can afford it;
· is simple and easy enough to make, so that the family can adapt or remake it as the child and her needs change.
A great variety of materials can be used: sticks, logs, wood, plywood, plastic, metal rod, cardboard boxes, paper, even mud.
Seats also range from simple to complex. The design depends on the child's particular needs and stage of development. Some seats serve mainly to keep spastic legs separated; others help a child sit in a more functional position. Some seats are designed to reduce muscle tone in a spastic child; others are designed to increase tone in a floppy (flaccid) child.

. Special seating on wheels

Wheels can be put onto special seats, for the benefit of both the child and her care-providers (mother, brothers and sisters, or others). The mobility (movement on wheels) achieved stimulates the child's development: exploration of her environment, enjoyment, physical co-ordination, self-reliance. And for the mother of an older, heavier child, being able to push her in a wheelchair, rather than have to always lift and carry her, makes moving her easier and protects her back.
Special seats can be built to fit into a standard wheelchair. Or wheels can be attached directly to the special seat. Above are some examples of different forms of special seats on wheels.
The 10 chapters in Part One of Nothing About Us Without Us illustrate several innovative seating designs (such as "positive," or forward-sloping, seating), the use of unusual building materials (paper and mud), and the involvement of disabled children and parents as partners in the problem solving process.
For more special seating ideas, including use of straps and wedges to improve positions or reduce spastic patterns, see the book, Disabled Village Children.
Designing child-friendly seats FOR the needs of the individual child
Every Child's Needs are Somewhat Different.
Designing a special seat for a child's unique combination of needs can be a challenging adventure. It requires an experimental approach, with as much involvement of the child and parents as possible, to figure out what design to use and what supports and other features may benefit or appeal to the child.
No one-including a disabled child-likes to be in the same position for very long. For example, if our knees are bent for a few minutes, we want to straighten them. If they are straight for long, we want to bend them. The body tells us that such change in position is healthy and necessary. It keeps our joints flexible and working well. Therefore, it is wise that we listen to the child and that we do not leave any child fastened in a seat (or standing frame or other assistive device) for too long. Most children (but not all) will find a way of letting us know how long is long enough.
It is also wise to design the seat so that it allows the child as much freedom and movement as possible, while making sure it provides the minimum amount of positioning and support needed to help the child sit up well and function.

Editor's Note: The text and drawings shown here are just a small sample of the material on special seating from Part One of David Werner's new book, Nothing About Us Without Us. See Resources Section for ordering information.

" Captions:

" A good wheelchair is not confining, but liberating.

" For a child whose body stiffens like this,
DON'T do this,
when all that is needed is this.

" What problems do you see with these seats?
(Side views)

" Here is a sampling of different seating designs that work for various children

" Some useful examples of seating with wheels

A Brazilian Low-Cost Neonatal Care Unit: Humanising, Preventing, and Simplifying

Based on information provided by the José Américo Silva Fontes Institute-IJASF

Introduction

The following article describes a low-cost, comprehensive neonatal treatment unit that has now been tested and installed in hospitals throughout the massive and poor Northeast region of Brazil. The average cost of this complete unit is US$5000, about the price of the high technology version of just one piece of the equipment shown. Besides saving lives of new-borns and especially premature infants, it is estimated that use of this equipment can prevent approximately 95% of the various impairments and disabilities caused by complications during and just after birth.

The José Américo Silva Fontes Institute (IJASF)

The José Américo Silva Fontes Institute (IJASF) is a Brazilian non-governmental organisation founded in 1993 whose main objective is to develop alternative, appropriate, adaptive, low-cost, and easy-to-handle-and-maintain equipment designed by the Institute's founder and patron, neonatologist and writer Dr. José Américo S. Fontes.
Over the course of his forty years as a paediatrician in the city of Salvador, Bahia, Brazil, Dr. José Américo has faced the challenge of working in poorly funded nurseries lacking essential technological resources and with high neonatal mortality rates.
The over 50 types of neonatal medical equipment invented by this physician (who is also a professor at the Escola Baiana de Medicina), are now considered indispensable in the over 100 Intermediate Care Units (where 95% of neonatal problems can be treated) in Brazilian maternity wards and hospitals where they are currently used.
Taking as an example Dr. José Americo Fontes' hospital unit, the percentage of babies weighing more than 1kg who previously died in their first days of life was 35/1000. After the introduction of the kit of equipment, the incidence was reduced to 14/1000. In addition to avoiding subsequent neurological sequelae that can often occur without immediate professional assistance, this low cost/high quality primary and secondary care unit allows treatment of frequent conditions as jaundice and perinatal asphyxia, without relying on an intensive care unit, which is too expensive for developing countries.

Partnership

To extend this successful experience to a broader range of users, the IJASF, in partnership with the Organisation for Fraternal Assistance (OAF), an NGO working in the city of Salvador to provide vocational training for low-income youth, founded the project known as "Gêmeos" ("Twins"), which promotes equal access to care for all neonates world-wide. Using the equipment with appropriate technology and technical training, the project aims to substantially reduce the high neonatal mortality and neurological sequelae rates that can be avoided in the developing countries which are the Project's targets.
Dr. Fontes is also working on a new book, a Technical Training Manual for Developing Countries on how to use the Neonatal Treatment kit.

Funding

Dr. Fontes' activities and the IJASF/OAF partnership have received funding and encouragement from various international and Brazilian organisations, including the Partners of the Americas, Ashoka Foundation, USAID (Pommar Project), UNICEF, Fundação Banco do Brasil, Companhia Vale do Rio Doce, CESE, CEADE, and the Bahia and Sergipe State Health Departments. The Referral Unit for the Twins Project is located in the João Batista Caribé General Hospital in the city of Salvador, which is part of the Bahia State Health Department.
The equipment described below are some, but not all the pieces that comprise the whole kit. Some of them, such as the Plantar Stimulation and the Neonatal Reanimation Unit are unique equipment, without a parallel in the commercial sector. Prices for equipment vary according to how many units are purchased.
For further information, contact:

IJASF
Rua do Queimadinho, no. 17 - Lapinha, Salvador, Bahia 40000-000 Brazil
Tel: (55-71) 242-3699;Tel/fax: (55-71) 362-8184 Email: ijasf@cdl.com.br

Equipment

HEATED INCUBATOR
This is universal, indispensable equipment for keeping both normal and high-risk infants warm, especially premature and hypoxic new-borns.
Technical specifications:
Common crib, wide and high, manufactured to provide greater comfort for the infant and ease of handling for the perinatal staff and to facilitate the work of the paediatrician and nursing staff. Manufactured with metal bars or fibreglass. Uses radiant heat furnished by common light bulbs (rather, of the "spotlight" type) easy-to-replace, allowing for maintenance by ordinary electricians in remote places. Thermal control is achieved with two thermostats - one mechanical and the other electronic - used simultaneously for greater safety. Allows for use in the Fowler or Trendelemburg positions.

PHOTOTHERAPY
The use of light, with 10 common 20-watt fluorescent light bulbs, is routine therapy for neonatal jaundice and a traditional, effective practice, utilised world-wide. The best results are obtained with a larger number of light bulbs, more body surface exposed to light, and a shorter distance between the light source and the infant's naked body.
Technical specifications:
Includes a mechanical elevator allowing for adjusting the distance between the light source and the infant's body. The illumination provided complies with international standards, according to measurements performed by the Centre for Technological Services of the Polytechnic School (Universidade Federal da Bahia).

PHOTO-HEATING
Hypothermia and jaundice are commonly associated with each other as neonatal events. The need to couple two different therapeutic systems creates operational difficulties for the paediatric and nursing staffs. This system was developed to handle this problem, allowing for the single or combined use of heating and/or phototherapy.
Technical specifications:
Same as those of the IJASF/OAF Heated Incubator and Phototherapy equipment. Specifically uses 7 (seven) incandescent bulbs, plus 8 (eight) fluorescent bulbs. The incandescent bulbs are protected by an aluminium screen and the fluorescent bulbs by an acrylic plate.

PARTIAL OR TOTAL PHOTOTHERAPY
This system allows for the use of appropriate light on either the jaundiced infant's entire body surface or just 50% of it. In the latter case, for partial use, it functions just like the Phototherapy equipment described above. The neonate with moderate jaundice thus stays on the mattress in a common crib, with light bulbs overhead. In severely jaundiced new-borns, Total Phototherapy is used, and the fibreglass shell and mattress are replaced with a cotton fabric netting, allowing for the light to reach the entire body surface. More than 10 (ten) identical fluorescent bulbs positioned below and turned on optionally and separately allow for total body light exposure, doubling the illumination, thereby reducing treatment time, risk, and hospital costs and providing more extensive and quicker reduction in bilirubin levels, hence less risk of brain damage.
Technical specifications:
The frame is the same as that described for the three previous pieces of equipment, plus ten lower bulbs with their own switch, in addition to a device to attach the transparent cotton netting. In places with high temperatures (tropical countries), the fibreglass shell and the mattress can be replaced advantageously in the partial phototherapy system with an opaque common cotton fabric netting. To provide total safety, the transparent (or opaque) cotton netting comes with an extra lining made of nylon that is attached underneath it.

PLANTAR STIMULATION
Unique equipment, using an electronic system (Epron) to provide preventive, intermittent, programmable cutaneous stimulation using a special small vibrator attached to the plantar region in premature infants with recurrent apnoea or who are susceptible to it. Has a digital panel in a metal box allowing one to control the time, intervals, and intensity of the desired tactile vibratory stimulation. Includes a memory system. Used optionally as a thoracic vibrator (for tapotement) in respiratory physical therapy.

NEONATAL REANIMATION UNIT
One of the greatest neonatal problems, especially in Third World countries, is perinatal asphyxia, which requires proper care for the depressed neonate in the delivery room. Saving the infant's life itself and avoiding future neurological sequelae that can often occur depends heavily on proper, immediate assistance performed by a fully trained professional. Yet there is a minimum amount of equipment needed to allow for adequate reanimation procedures. Reanimating an anoxic infant means to provide it with undelayable emergency treatment (first care).
Technical specifications:
This equipment has a dual function - heating and reanimation - with the same technical specifications as those just mentioned, all made of fibreglass, with numerous advantages: it is lighter, costs less, has better finishing, provides thermal and electric insulation, does not rust, etc. Also has a fibreglass part, with its own mattress, coupled on the upper part of the shell, that turns it into a Neonatal Reanimation Unit which is higher and has lower edges on the side and back walls but which is totally open in the front, thus allowing for easy application of all the recommended neonatal resuscitation procedures: aspiration, positive pressure ventilation, intubation, external cardiac massage, IV medication, etc.. It can also be used as an intra-hospital Transport Unit, since the following can be installed under the shell: an automobile battery for the use of 12-volt bulbs or resistances and a small oxygen tank. Oxygen tents are also made in three sizes (small, medium, and large).

Situation of Assistive Devices in Bangladesh

The following is a summary of material provided by Johan Borg of ILB - InterLife Bangladesh Disability Programme, Dhaka, Bangladesh

In Bangladesh, as elsewhere, there are four major elements in building a society where people with disabilities can lead a life in dignity with equal opportunities: rehabilitation, assistive devices, accessibility and positive attitudes. An assistive device is often the link between a person with a disability and the surrounding environment, including other people.
In a countrywide survey by ILB in 1996, 25 producers and six distributors of assistive devices in Bangladesh were identified. However, not all were functional in terms of production and distribution. Local carpenters and shoemakers contribute to production in a limited extent to other small organisations that make assistive devices for their own activities, particularly those implementing CBR programmes.
From an international perspective, generally the quality of assistive devices produced in Bangladesh is poor and the technology old. Often the devices are heavy and not adjusted or fitted properly. There is also a need for an appropriate delivery system as well as procedures in place to keep the costs of those imported (and made locally) minimised.
One of the recommendations from a workshop on assistive devices in April 1998 was for the establishment of a network of organisations producing or distributing assistive devices in Bangladesh. In August 1998 the Assistive Device Network (ADNet) was formed with a mission to assist and support organisations in their activities of improving the situation of people with disabilities through the use of assistive devices. By November 1998 eight government and non-government organisations were members of ADNet. These member organisations produce and distribute orthotics and prosthetics, standing and walking devices, special seats, wheelchairs, tricycles, hearing aids, toys, assistive devices for daily activities, protective footwear, tools and equipment for work, simple devices for communication, and Braille books. They can also assist in adaptations of homes and other premises to increase accessibility.
In Bangladesh there are no formal training programmes for assistive device professionals. Three NGOs organise training opportunities open to participants from other organisations: the Centre for Disability in Development (CDD), the Centre for Rehabilitation of the Paralysed (CRP) and ILB.
The common materials used for production are metal, plastic, rubber, foam, cotton, leather, fabric, wood, bamboo, cane, chemicals, plaint, plaster of Paris and electronic components. Not all organisations can find the necessary materials in the open market. New local adaptations using indigenous materials are one of the ongoing objectives of ADNet.
The contact information is: ADNet, House 5A, Road 25A, Banani, Dhaka, Bangladesh. Email: ilb@citechco.net; Fax: 8802 87 27 80.

An Overview of the Whirlwind Children's Project

by Patty Ruppelt and Jan Sing, Children's Chair Project, Whirlwind Wheelchair International

Whirlwind Wheelchair International is currently expanding its wheelchair family to include wheelchairs for children. Just as mobility is as basic a need as food and shelter for an adult with a disability, a wheelchair is a necessity for many children with disabilities if they are to develop and thrive to their maximum potential. Over the last two years WWI has expanded its consumer base to include young children with disabilities.
Depending on a child's age and type of disability, some children will be active wheelchair riders, while others will be more limited in their use. If a wheelchair allows movement even within just one room, this freedom of movement will have a significantly positive impact on the child's ability to interact with family and friends and to explore the environment and access sources of stimulation for the social and mental growth. An opportunity for independent mobility, even if limited, will promote a child's sense of autonomy.

Goals
The goal of our wheelchair is to design a wheelchair base which:
" can be sold for under $100
" is appropriate for children with disabilities due to polio, cerebral palsy, muscular dystrophy, and spina bifida.
" fits children younger than our adult size wheelchair.
" allows as many children as possible to self-propel on flat ground,
" can be easily pushed around rough terrain
" is low to the ground to allow children to get in and out on their own as much as possible.

Design Challenges
Many unique challenges arise with children's wheelchair design. The Whirlwind design has evolved with many innovations originating with the wheelchair riders. Especially in the case of young children, consumer input may be based on observation of children riding the chair as well as information from their parents/caregivers. The majority of children in need of a wheelchair for mobility have cerebral palsy (CP). Unlike spinal cord injury or amputation, CP can cause a large range of disabilities. Often children with CP require supportive seating in order to sit up and use their hands and arms efficiently. Also, young children grow and develop quickly and their mobility device must accommodate and foster these changes.
For many older children, a narrowed adult chair may provide a good alternative for mobility. However, this is not an appropriate solution for smaller children. Young children get into and out of a chair differently, and can access drive wheels more easily if they are forward of the seat. For this reason our design work has centred on a wheelchair seat that is low to the ground allowing for easy crawling into and out of the seat. A lower seat also encourages playing and socialising at peer level. Especially for younger children, front-wheel drive wheelchairs allow easy access to the wheel. With the drive wheel in front even a non-verbal child can understand the idea of propelling the chair. The ability to reach back to access a wheel would be a challenge even for a young able-bodied child.
The position of the drive wheel continues to be a major challenge for us. While front-wheel drive offers many advantages to the youngest wheelchair riders, it presents difficulties for parents when pushing the chair in stroller mode. With the drive wheels in front, negotiating curbs and stairs is very difficult. Because the casters are in the back of the chair and cannot bounce up or down obstacles, the chair and child must be picked up together and placed up or down a curb.

Design Parameters
" Age Appropriate wheelchairs
As far as we know, there is now only one country, which can support a market for wheelchairs for children under 8 years old. Most disabled people in developing countries do not receive a wheelchair in their whole life. While we would like to provide wheelchairs for children under 8, the more years they can use the chair, the more likely they will receive one. The smallest adult Whirlwind wheelchair is typically 14" wide and 19" high seat.
" Disability: Propelling: Polio, cerebral palsy
We are designing for children who can propel themselves - given the proper chair. It should accommodate as many children with disabilities as possible.
" Materials: The materials should be locally available in developing countries and repairable in the rural areas.
Mild steel tubing measuring 3/4" and 1" and flat (square and round), wood, cane/bamboo, cotton canvass, plastic roping, simple bicycle parts, limited # of nuts and bolts, limited varieties of foam.
" Available Technology: The chair designed should be as simple as possible since many wheelchair builders have only welding training, limited math and reading, and limited knowledge of the social and physical issues of disability.
" Available Equipment: Simple hand tools (hacksaw, screwdrivers, hammer, pliers, centre punch, scissors, etc.), brazing equipment, vise, hand drill, sewing machine, tube bender
" Adjustability: Any adjustments should be self-explanatory and easily understood by parents, or local therapists.
The more adjustable the chair is, the better it will suit the child. The child will tend to grow in length much more than in width. However, the design needs to be kept extremely simple so that parents can adjust it, wheelchair builders will build it correctly and organisations will fund it.
" Durability: 8 years +
While most chairs in the US are supposed to last at least 5 years, this chair may be the only chair the child can get, so it should be very durable. It should also be more durable than the U.S. chairs because the chair will be in off-road conditions for most of its life, and thrown onto buses.
" Seating Suitability, Viability: Should not count on any special seating but should be able to add special seating.
While some countries have seating specialists, they are generally located in the large cities. The parents may live a day's journey away and arrive at the wheelchair shop without the child. The chance that a specialist will regularly visit the child is very small - and when they do, the specialist has only a very small amount of time to work with the child. Some parents may have had some training, but in most countries such programs are not available. So the frame needs to be easily adjusted and understood intuitively and suited for as many children as possible without special seating.
" Weight: Under 25 lbs.
" Transferability: Most children should be able to crawl from the floor to the chair and back on their own.
" Height: Low
The chair should be as low as possible to keep the child accessible to the floor and their peers.
" Pushability by others: Parents and other children will push the chair constantly over curbs, cracks, steps, stairs, roads with regular 6" deep ruts, and through mud and water. And young friends can be very rough.
" Economic Viability: Under US$90.00
We estimate that 90% of the wheelchairs will be bought by charitable organisations. However the more expensive the wheelchair, the fewer children who will receive a wheelchair.

Buying wheelchairs for children
We are researching the distribution as well as the design parameters locally and internationally. This information will enable us to develop a wheelchair that can be realistically distributed through existing systems, and will be appropriate for the conditions and children in most developing countries. This will be challenging because in some places the average annual income is around $100. Wheelchairs are not the highest priority for a family that is struggling just to feed all of its members.
Another major concern is the attitudinal barrier to the necessity of mobility for young children. Often a child receives a wheelchair only after becoming too heavy to carry. The importance of mobility for a child's development is often overlooked. Many parents believe that their child is disabled as an act of God or punishment for something they have done wrong in the past. And so they will be hidden. There are fewer education and employment opportunities for people with developmental disabilities. So it is difficult to encourage families to invest heavily in their disabled children.
The need for simplicity of design and the need for adjustability (which often requires complexity) often present us with conflicting priorities.

Demand for Flexibility and Variety
In terms of mobility devices, children have a variety of individual needs depending on their type of disability, their home, school and community environments and their age. A child's access to a wheelchair, determined by governmental and non-governmental programs, differs significantly. For this reason, we are currently developing a variety of mobility solutions for children. With all of these designs, our main focus is independence for children with disabilities. We now have several prototypes of wheelchairs for children which will help make these children as active as we can. We have been experimenting with front, mid and rear wheel drive, centre of gravity wheelchair, low profile caster wheels, simple adjusting seat bucket angles and leg lengths. We will be finishing the next phase of prototypes and then field testing them here in the United States. We hope to begin field-testing in Africa in 1999.

Testing Considerations
When considering strength parameters and testing of the chairs, we consider the load to be 100 lb. (41Kg). While this is much heavier than a young child, we assume that more than one child may be riding the chair (a sister or brother may hitch a ride) or that the chair may be used at the same time for the family shopping, for instance. For strength testing purposes, we use methods developed for the adult Whirlwind but with one half of the weight in the chair.

Nicaragua
Nicaragua has two wheelchair shops run by people with disabilities, which are producing wheelchairs for children. Most of these wheelchairs are subsidised by a Danish organisation, PRODINIC and distributed by a local organisation, Los Pepitos. Los Pepitos has a fledgling distribution system for wheelchairs with offices in many of the regions of Nicaragua. They conduct outreach and parent education about disabilities. Most of the staff in these regional offices are parents of children with disabilities, working on a volunteer basis. Usually the Los Pepitos physical therapist takes measurements and makes arrangements for the financing. For children who have less disability, there is usually some discussion whether the child should use a walker or a wheelchair.
Most wheelchairs in Nicaragua cost about $275. Parents are asked how much they can afford to pay. (The average income of for example, a teacher in Nicaragua is $50/month, which may support a family of six.) Los Pepitos helps find a way to subsidise the remainder either from charitable organisations or by helping organise a neighbourhood fundraising party.
PRODINIC and Los Pepitos have found that it is better to require families to pay a portion of the cost so that they will be more likely to take care of the equipment.
The workshops in Nicaragua, Organización de Revolucionários Deshabilitados and Fundación Para La Movilidad Independiente are building several styles of wheelchairs for children:
" One model designed for people who cannot push themselves. It reclines, breaks down into three parts and uses 12" bicycle wheels. The seating system, made out of well ventilated plastic straps is an interesting solution for very hot climates and can be easily repaired by the parents. This system also allows for easy cleaning when the children urinate. Since the wheelchair is a copy of a first world design it has a lot of features, is complicated, is not very durable, and is expensive.
" Another design developed with Motivation, a U.K. based organisation, has a simple rigid frame and the seat back folds down forward. It uses quick release 20" bicycle wheels for the rear wheels. It also has an adjustable height push handle.
" The "Hospital" style wheelchair is designed for children with cerebral palsy and flat smooth floors. It is made in rear and front wheel drive models and folds. It uses 20" bicycle wheels. It is very difficult to open and close and may be more complicated than it needs to be.

We saw one Whirlwind I scaled down which is a folding wheelchair designed to be self propelled, very simple and for rugged terrain. This model was made with 20" drive wheels.
Nicaragua has some specific environmental conditions, which will affect the success of a design of wheelchairs for children. The country includes areas which are very hot and areas which are cool. Los Pepitos staffs felt a strong need for really good ventilation for places like Managua, and thus have been prescribing the wheelchairs using the plastic strap and no solid seating. In other parts of the country like the northern mountain areas, this is less of a concern. Here the physical therapists prefer more traditional solid seating with lateral, head, hip supports and seat belts.
Throughout Nicaragua, the usual terrain will be dirt and gravel. Most of the houses have dirt floors. Some roads are paved but many are dirt, mud, gravel and rocks. Many houses are too small for a wheelchair to be used inside with whole families living in one room. Most routes will inevitably include many high curbs, small gates or doorways.
Los Pepitos does not expect a wheelchair to be used indoors, but rather sees it as a way for the parents to take the children around town or for brothers and sisters to take them to school. Usually the children will sit in a rocking chair or bed while in the house. Sometimes children with cerebral palsy are smaller than average because they are undernourished and experience slow growth..
Children with disabilities are usually uneducated. However Los Pepitos, CEPRI and other organisations are fighting to get more children with disabilities into schools. None of the people we spoke with expected the children to ever have an independent life or obtain a job. However they were all hopeful and knew that this situation for some of the children was only because of social discrimination and not ability. In general, services and organisations for children with disabilities appear to be just beginning.

Africa
We introduced the Children's Wheelchair Project at the 1998 African Wheelchair Congress partially organised by WWI. We received many useful comments from other wheelchair builders to use particular care when providing wheelchairs to children with cerebral palsy. The Association for the Physically Handicapped Coast Branch (APDK) in Kenya has developed a 20" wheel version of the Whirlwind Africa 1 chair. Rescu Wheelchair Centre in Zimbabwe is continuing to produce successfully the Junior model with 24" wheels of the Whirlwind Africa 1. Malawi Against Polio is working closely with physical therapists to build custom wheelchairs for children, and Disacare Wheelchair Centre in Zambia is producing a wheelchair for people with cerebral palsy with a commercially made plastic moulded seat.
We hope to collaborate with organisations in Uganda, Nicaragua, Mexico, Kenya, Zambia, Zimbabwe, and Sri Lanka with the work they have already begun with wheelchairs for children.

Please Contact Us
We would like to hear from anyone currently providing wheelchairs for children. We want to learn from your experience and would appreciate any comments you have about our project. You can also donate towards a wheelchair fund through Whirlwind Wheelchair International to help families buy wheelchairs for their children.
For information, please contact:

Whirlwind Wheelchair International
School of Engineering
San Francisco State University
1600 Holloway Avenue
San Francisco, CA 94132
Tel.: (415)338-6277
Fax: (415)338-1290
E-mail: whirlwind@sfsu.edu

Captions:
" Jan Sing, Director of the Children's Chair Project, describes a prototype at a design review.
" Two models illustrate the forward and rear positions of the drive wheels on the children's chair. Some children have an easier time propelling the chair with the wheels in the forward position.
" Children using adult-sized wheelchairs is still a common sight in most countries.

The DOSVOX Project - Changing the Lives of Thousands of Blind Brazilians

By Prof. Jose' Antonio Borges, DOSVOX Project, NCE/UFRJ - Federal University of Rio de Janeiro, Brazil.

How DOSVOX began

In August 1993, I entered the Computer Graphics class of the Informatics course at the Federal University of Rio de Janeiro. Suddenly I noticed a student in the first seat, with "strange eyes". I realised immediately that the boy had some vision problem.
I walked to him and we had the following conversation:
- "Hi, what is your name?"
- "Hi, I'm Marcelo Pimentel."
- "Excuse me for this question, are you blind or have some serious problem with your vision?"
- "I'm blind".
I became a bit confused. How to teach computer graphics, a subject that is almost totally visual to a blind person? Computer Graphics is also a mandatory discipline in the Informatics course. A complicated situation.
- "Marcelo, you know that this discipline deals with visual subjects. Let's talk about this after this class, OK?"
I taught in the class, normally, but thinking about how to solve the blind student problem. Obviously, I could ask the Department to excuse the student from the course, but I felt that it would be important for his academic formation to study some important mathematical subjects that are taught. There should exist some way, like substituting the visual part by something more useful for the student.
At the end of the class, I didn't have any conclusion. I decided to know more about the student and his problems.
- "Do you know programming? "
- "Of course, teacher, if not, how could I be here? "
- "And how do you create programs?"
- "Well, when I entered the University, my father gave me a microcomputer, an IBM-PC XT. I know where the keys are, and I type in. When I finish, I call my father, he reads the screen to me, and this is how I program".
- "Is there in your computer any equipment that could help you in reading the screen or in your interaction, making your use easier?"
- "No, teacher. These things are very expensive. My family couldn't pay for this."
- "Well, Marcelo, I will think more in your case, and I'll tell you later what to do in relation to the course."
- "Ok, teacher".
I went home, thinking how to solve this case. I knew that, since the 70's, many computer interfaces for blind people have been developed. Even in Brazil, there were dozens of blind people that have been working as programmers or system analysts, aided by this equipment. Those interfaces, however were very expensive (the cost of a very simple system is above US$3000,00), and so not adequate for broad use. At this time (1993) even the University didn't have a system like this!
I decided then to adapt the course for the blind student, maintaining all the mathematical subjects, and substituting the visual part for an oriented work that could lead to the creation of facilities for other blind students. The academic commission of the University has approved my idea. The key to our work would be the construction of a system that could be used for students from medium/low income families, using inexpensive equipment that they could buy.
It seemed more or less obvious that the building of a system based on voice synthesis would be the correct choice, because it would not involve complicated and expensive mechanical aspects. And with a digital-to-analogue converter, built with resistors and a small amplifier, it should be possible to create a hardware-software interface for a PC to produce Portuguese speech. The hardware cost (not including the microcomputer, obviously) would be less than 10 dollars. (Currently, sound boards are common and cheap, but at that time, they where very difficult to obtain in Brazil!).
And then DOSVOX was built (1). Now, 5 years later, Marcelo has total independence in use of the computer, using not only DOSVOX but also many other tools that are now available in the university. He has concluded the Informatics Course, and currently works with me and another student in the development of new facilities in the scope of the DOSVOX project.

How to build a system so all Brazilian blind persons could use it

If our intention was that everybody should use the system, it should speak our native language. This may seems odd, but imagine a system built for Americans that speaks only French! In Brazil, less than 0.1 % of the blind people speak another language, which explains the complete failure of very good foreign computer systems for the blind when applied in Brazil.
I discovered then that (in 1993) there was lots of research for English speech synthesis, very little for other languages, nothing for Portuguese. Then I had to begin from the beginning, recording every sound of Portuguese, and building a Portuguese speech compiler, a very hard task, specially because Portuguese has very different phonetics compared to English. The result was the first complete set of Portuguese speech synthesis that was built.
The system must also have a very friendly interface, so the learning time should be the minimum possible. So, Marcelo and I have been building in his course the first pieces of what is our DOSVOX system. A complete operating environment, based on menus has been built, extremely easy to use by people with low education levels.

What is inside DOSVOX

DOSVOX is now in its version 2.1, and runs on 2 platforms DOS and Windows. The Windows version has 36 programs including text editor, text reader, a small screen reader, file utilities, text formatter, automated Braille printing, many utilities (agenda, telephone book, calculator, etc), games and educational programs, all prepared for blind users. It gives support for the use of external programs, reading menus and fields, and possibly automating the mouse clicks, needed by some of them.
DOSVOX works both with pre-recorded messages and synthesised speech. This way, the use of utilities and games have a "personality", and do not sound like a robot speaking.
DOSVOX produces and reads data that can be processed by other programs of common use by non-blind people. For example, using DOSVOX a person can have access to programs using OCR (optical character recognition) or translation from other languages.
There are also many specialised programs that can be adapted to put blind people to work in some specialised tasks, like computer-based telemarketing and education. The DOSVOX Project on demand normally produces these programs, when a firm wants to open working places to the blind community. For example, there are more than 200 blind people working in telemarketing using a DOSVOX derived program (Termivox).

Why is DOSVOX so successful in Brazil?

DOSVOX has spread throughout Brazil, and today has more than 3000 users. Thousands of blind people have had their lives improved with the computer. DOSVOX produced a big impact in the integration of the blind in the society, opening new perspectives of study and work. Because the system is so inexpensive, any firm can afford to buy a system like this, so that it can employ a blind person for tasks like telemarketing, for example. Students can read, write, and be understood by teachers and colleagues that do not know Braille.
Many other reasons produced the success of DOSVOX:
" a very low cost:
The system has been mass produced and is now sold for less than $100 (one hundred) dollars, including cassette tapes showing how to use, installation diskettes, the synthesiser and headphones. Adding to this, the cost of a used IBM PC-386 (that is considered garbage in Brazil), this means that the investment of a family to give a computer to their blind son or daughter is less than 200 dollars!
Somebody could say that in a country where the minimum wage is $100 dollars a month this is too much! We agree, and we are working to stimulate firms that are throwing away their old computers to give them to blind poor students. There is also a free version of DOSVOX with fewer facilities, but enough to use by students, distributed via Internet (Portuguese version available and soon also a Spanish version).
" the system speaks the native language
The system is made for the common Brazilian blind person. The dialog is made in Portuguese, removing "computerese" and English words. (The Spanish version speaks Spanish, naturally).
" appropriate technology:
The technology that is used is very simple. The source code, in Borland Pascal, is distributed with the system to provide a source of study for students that want to create technology for people who are disabled. In fact, using the DOSVOX technology, some successful developments have been done in the aid of rehabilitation of children with impaired speech.

DOSVOX and Internet

Telecommunications are a reality of these days. Information transportation via the telephone, linked to the international communications network (Internet and others) that uses satellite technology, allow the use of information in instant and transparent ways directly by our houses, at reduced costs.
For blind people, the access to information on the network, allows them to read newspapers, send letters with quick answer, access to videotext centrals, to do remote banking, to participate from discussion lists, and so on. This is particularly important: this means culture!
DOSVOX has built-in access to the communications via Internet. The project DOSVOX made an agreement with the National Research Network (RNP) of the National Research Council (CNPq), and it is guaranteed a free access to blind people to the Internet via phone. Special programs has been created to ease the use of electronic mail, fax transmission, newspaper access, bibliographical research, and file transmission for non expert users. It's possible also to have access to the World Wide Web, via the public domain program LYNX that gives access to the text part of the page or using a simplified browser that guides the person using menus.
This could seem to be a very simple thing (and it is!), but very few blind people in Brazil, have read a newspaper in paper. They often read Braille books and always listen to the TV. Somebody could say that there is news in the TV or in the radio. But this is information you can't choose: they come to you in a packet and you must listen to everything, even what you don't want to... The written information is also, often, much more detailed.
Via DOSVOX, we are trying to have a significant proportion of the blind community communicating, not only among them, but specially with the "outside" world, the world of the non-blind. The cost for this is low for the user, as the communication service is free (except for the telephone use).
There are now approximately 500 active Internet DOSVOX users, and this number is growing very fast. The means the number of letters they receive is between 10 and 50 (some of them receive nearly 100 communications, especially from interest lists). Many of those letters came from non-blind people, which is in total accord with our socialisation ideas.
There is a large number of blind people, however, that while having access to cheap computers, haven't access to the telephone and (extremely expensive) Braille printers. In Brazil, the right to have a telephone is bought, and very expensive ($1000 dollars or more)! For these people, DOSVOX is being installed publicly in libraries and rehabilitation centres, so they can have access to the OCR technology (Scanner with Optical Character Recognition), Braille printing and use of Internet.

Conclusion

DOSVOX has been created using Brazilian technology, with very low investment, low complexity, and adequate for the third world needs and difficulties.
The impact of DOSVOX system over the blind community is very significant, and can be easily evaluated by the reaction in newspapers, radio and TV. It is one of the most well known computer project for disabled people in Latin America. The new Spanish language version of DOSVOX is now in use in Uruguay and other countries (150 users). We expect that with the much wider use of DOSVOX, a big step will be taken to transform the isolated blind community of Brazil into a very active and participant group, productive and integrated to the society.
However, DOSVOX is only a tool. But it is a tool that will allow the broad inclusion of disabled people in the society, as we see in developed countries. We hope that thousand of successful blind people using DOSVOX, can serve as examples to prove to the Brazilian society that blind people can be very productive human beings, and that worth investing in the dissemination of low cost computer technology for blind people.
If you want to know more about the DOSVOX project, you can write to:

Antonio Borges
CP-2324 - NCE-UFRJ - Cid. Universitária
20001-970 - Rio de Janeiro - RJ
E-mail: antonio2@nce.ufrj.br
Home page (in Portuguese;
English version soon available)
http://www.nce.ufrj.br/aau/dosvox

(1) Foot Note:
DOSVOX is the result of the efforts not only of Marcelo and myself, but of many other people, giving their best efforts to the developments for blind people. Among them, it's important to highlight Diogo Fujio Takano, designer of the low cost synthesiser, Orlando Jose' Rodrigues Alves (in memoriam) developer of many DOSVOX complexities, and Luiz Candido Castro (in memoriam), blind, the first teacher of DOSVOX, and many students and volunteer programmers.

What Is Culturally Appropriate? Finding a Middle Way

By Alexandra Enders, Rural Institute on Disabilities, The University of Montana, USA and President of RESNA (the Rehabilitation Engineering and Assistive Technology Society of North America).

Introduction

Information is the medium for the communication of ideas. To improve equitable access to disability related information and resources, the cultural context of information exchange needs to be considered. Cultural context is not just something to be aware of during international exchanges, it is a part of all human transactions.

A Recipe for Misunderstanding

Imagine this scenario: You have been asked for the best and most recent state of the art technology. No one can pay for it, training to effectively use it is out of reach, maintenance and repair will be a logistical nightmare, and it doesn't fit the intended environment. Does the requestor live in an underdeveloped country, a major city in a developing country, an inner city in industrialised U.S., or rural America?
The differences may not be as large as one would initially assume. There are striking similarities, much of it in the way information is presented and how issues of cross cultural communication are approached. Assumptions about perceived value of available options must be clearly understood by all parties involved. You can provide information and access to resources that seem to appropriately meet the identified needs. However if it is not presented in a format/context that the recipient values and trusts, it won't be an acceptable solution.

Striving Toward Valued Outcomes

We are in the business of increasing the impact and acceptability of effective strategies, products, research findings, technical assistance, and training opportunities in the lives of people with disabilities. The outcome measures of our services and products should be based on the consumer's perception that something of value was received in the transaction. It doesn't make any difference that you see value in your intervention, if the individual or family you are working with finds it unacceptable, worthless, or inappropriate to his/her life, it is.

Moving Away from a Black and White World

Not many years ago, a simpler worldview sufficed. Countries were either industrialised or underdeveloped, technology was either high tech state of the art or appropriately low tech, societies were either bountiful rich "haves" or poor handout seeking "have nots".
Things have changed. Old categories don't work. We need better ways to distribute available resources. With the socio political changes underway in the world today it is naive to view the planet as composed of industrialised haves and underdeveloped have nots. Many countries that were resource poor 15 years ago are now considered at a mid-level while the highly industrialised eastern bloc countries are far from resource rich.
This is also reflected in rehabilitation/disability services, where we need models that present solutions in categories that fall in between the extremes of the high tech rehabilitation centres and the World Health Organisation's community based rehabilitation scheme. Neither of these "ends of the spectrum" approaches work very effectively in rural America. Professionals in specialised urban rehabilitation centres frequently counsel their rural patients to remain in the city after rehab, because they are convinced that the necessary resources and supportive services will not be available if the person returns to their rural community. These cross cultural biases (urban rural) and unquestioned assumptions are only compounded by ethnic and socio economic differences. Diversity, the buzzword of the 90's, assumes an acceptance and value of different experiences cultural, ethnic, socio economic. There is little acknowledgement of diversity in rehabilitation today, in the U.S. or elsewhere.

What Should We Call the Middle?

A curious vacuum exists for effective strategies that are in the middle of the spectrum. Most of the words that fit already have other connotations. Intermediate and appropriate are distinctly tied to international development efforts. Appropriate technology is generally focused on the needs of rural people in third world countries. When this approach is adopted by an industrialised country such as the United States, its target is usually the development and implementation of technologies appropriate for low income communities, especially those in rural areas. Appropriate technology is grounded in cultural, political, and ecological frameworks; its proponents often share an almost evangelical zeal. Unfortunately most professionals working at the sophisticated urban end of the spectrum have little appreciation for this approach. It also tends to be rejected by urbanites in major cities in underdeveloped and developing countries.
The U.S. National Centre for Appropriate Technology (NCAT) stated that "The main goal of appropriate technology is to enhance the self reliance of people at a local level." If we substituted the word "assistive" for "appropriate", we would have a useful mission statement for many individuals working in our field. Appropriate assistive technology doesn't have to mean cardboard seats and tire tread sandals. We need a way of using the concepts implicit in appropriate technology, and presenting them in a format that even the "high techies" can find acceptable and valuable.

A Closer Look From a Distance

International experience provides the outsider with a clearer view of his/her own culture, and the hidden assumptions that often lead to misunderstanding and miscommunication. It can also point to directions for developing new strategies.
Working in Armenia, when it was still part of the Soviet Union, made me more aware of the need for a "middle way" to approaching cross cultural communication related to services for people with disabilities. My training and experience has enabled me to transcend the high tech/low tech gap. I've always been involved at both ends of the spectrum the high tech environment of Stanford and the Electronic Industries Foundation, and the low tech world of DIY (do it yourself), scrounging for low cost solutions, and supporting projects in third world countries.

Uncovering Hidden Assumptions

More than one of the patients on the spinal cord injury rehabilitation unit in Armenia could have benefited from independent mobility while their pressure sores were healing. There were few gurneys available, and none could be spared to be fitted with drive wheels. David Werner's Manual, Disabled Village Children, has a clever adaptation for turning a wheelchair into a self propelled prone trolley. The orthotist was able to build the adaptation, and attach it to one of the heavy, fixed armrest wheelchairs. The first patient was shown the pictures of how the device could be used (you essentially drive the wheelchair backwards). Compliantly he agreed to try it, but then refused to leave his room in it. After repeated discussions (all through an interpreter), it was finally clear that he felt he had been given a peasant device, and though he liked the freedom, he was embarrassed by the image he felt it portrayed. He stated that though he came from a mountain village, he was not a peasant. He refused to use the mobility device on the Unit. Several weeks later, I found a project plan for an almost identical device in the appendices to Ford and Duckworth's Physical Management for the Quadriplegic Patient. The book had been circulating on the Unit, the pictures in the chapter on sexuality the major attraction. When the pictures of the similarly adapted wheelchair from the specialised rehab book were shown to another patient who needed one, he was eager to try it. The original device was adjusted to fit. When presented with the adapted chair, he refused, stating it was the peasant device that we'd used with the other individual. I remain convinced that if I had presented the device to the initial patient as originating from the sophisticated Ford and Duckworth text, and not with pictures of barefoot peasants, that the acceptance would have been completely different.
Coming from a subset of American culture that will accept just about anything that works, it was amazing to me to see a useful device rejected because of the image it conveyed. The more I observed, the more I could understand why some things were accepted, while others were rejected out of hand. Much of the causality can be traced to the way the information, service, treatment, or product was presented.
This was not peculiar to Armenian mores. I worked as part of a multinational team; with members from 15 countries. When I tried to introduce material from the WHO's community based rehabilitation (CBR) manuals, I found no support. Others including the team leader from England and head nurse from Australia, felt these manuals inappropriate. After all, "we weren't in Africa". Having learned my lesson about using pictures, I assured them we would not use the pictures. The information in the manuals was directly applicable, but most of my colleagues could not get beyond the presentation style and format.
I returned to the U.S. convinced that we needed to develop better communication vehicles, that we were losing valuable information because we do not see the broader market possibilities, and only package data for a particular audience.

Collaborating on a Middle Way

Today I see a broader audience than the two primary ones described. There has to be a middle way. Consider all the people who need the same basic content in the information developed for resource poor societies. A large number of these individuals are not and do not consider themselves peasants. The list includes the entirety of the former Soviet Union, the old former eastern bloc countries, major cities in developing countries.
For example, much of rural U.S. could be considered in this category. People in many rural areas experience anomalies in resource availability. They may have all kinds of high tech machines available to them during inpatient treatment: continuous passive motion, electrical stimulators, biofeedback devices. But if they need ongoing assistive technologies, they are probably going to be left to their own devices. Most Americans probably would not balk at building something that came from a book intended for third world citizens. But for most people this material would be difficult to locate. And sometimes it takes a little imagination to translate it. For example, a book from India has construction ideas for a low cart useful inside village huts, where most people cook and eat close to the ground. The same idea appears useful for a Native American dwelling which has high doorway thresholds which cannot be ramped due to the culture's spiritual belief system. The Indian trolley has a set of wheels that allow the driver to tip back and forth over a threshold. It would be valuable to take the Indian material and redraw it so it is more graphically acceptable to Native American applications.

Characteristics of a Middle Way

Middle Way projects and communication methods incorporate:
realistic economic and cultural context
accurate understanding of cultural self perception (i.e. the way people see themselves and want their neighbours in the world to see them)
flexibility and the ability to see beyond the boundaries of one's own cultural interpretations
mechanisms for mutual two way exchanges
emphasis on the value of contributions by all participants, including explicit identification of what the outsiders will learn and receive in exchange for what they bring to the project
full participation and equitable sharing among all participants, not a charitable giving to needy folks
sustainability and self sufficiency

Acknowledgements

I would like to thank Ralf Hotchkiss and Greg Dixon for the wisdom they have shared with me on these issues.

Brief Reports - Brief Reports - Brief Reports

The following are brief reports related to children with disabilities or appropriate technology

New Disability Clip Art
Positive images of children and adults with disabilities in everyday-life situations and inclusive settings are now available from Madgraphics in one-colour and full-colour collections - at half the price to developing countries.
o Full-colour image collections delivered on CD:
- 40 children's images in full-colour, greyscale and line art versions:
US $115 + shipping/handling
- 40 adult images in full-colour, greyscale and line art versions:
US$ 125 + shipping/handling
o One-colour image collections delivered via download (samples opposite):
- 40 children's images ................. US$ 40
- 40 adult images ..........................US$ 40
- 80 children's & adult images .....US$ 80
For more information visit the Disability Clip Art web site: (http://www.disabilityart.com) or e-mail: madgraphics@clark.net. Address: 4600 Pinetree Road, Rockville, MD 20853, USA. Tel. 1(301)924-2408. Fax: 1(301)924-2496.

Drum Beat: Communication and Change News
An international email and webnetwork has been launched by The Communication Initiative to provide information and dialogue on communication, development and change. Called "Drum Beat: Communication and Change News," some of the partners are the Rockefeller Foundation, UNICEF, USAID, WHO and BBC World Service.
Examples of items covered are: a self-powered wind-up lantern being produced in South Africa; a news agency promoting child rights in Brazil; and an association of broadcasters in child survival. Contact: email: wfeek@coastnet.com or website www.comminit.com

UNICEF CD Rom Includes Disability Illustrations
A combined CD-Rom and printed illustration catalogue has been published by UNICEF to provide appropriate drawings for public education materials. Among the many topics covered, children with disabilities are represented in this easy to use resource.
Compiled and organised by George McBean, UNICEF Caribbean Area Office and Nick Narishan of UNICEF Headquarters, the collection represents the work of artists from more than 40 countries who provided their work copyright free to help illustrate social development messages.
The Collection is organised around seven main categories: lifestyles (e.g., urban, rural); environment (e.g., water, agriculture); health (e.g., disabilities, nutrition, disease prevention); cartoons (comic strips or characterisation); miscellaneous (e.g., animals, UNICEF logos); Maps; and Communication (e.g., folk art, education, media).
The package is available from George McBean, UNICEF Headquarters, 3 UN Plaza, New York, N.Y. 10017 .

AHRTAG Becomes Healthlink
The long-established international information resource on appropriate technology and rehabilitation known as AHRTAG, has now changed its name to Healthlink Worldwide. Healthlink will continue to work to improve the health of poor and vulnerable communities by strengthening the provision, use and impact of information.
Publisher of CBR News, this British-based group has also recently reprinted, "We Can Play and Move", by Sophie Levitt. The booklet features mainly line drawings showing simple ideas of how to help children with disabilities to develop physically and intellectually in resource-poor countries. Available for L6 in English, Bangla, Chinese and Spanish.
Healthlink also collaborates with Amar Jyoti in India and has recently supported its publication of a series of books on mainstreaming children with disabilities in developing countries.
They have also recently published a booklet, Essential Resources in Community Based Rehabilitation." Contact information is on page 23 under resource organisations.

Photography Book on Appropriate Prostheses
A new book of photographs illustrates the latest generation of prostheses being made available to people who lose limbs in accidents or through armed conflict and landmines. Gervasio Sanchez has explored the situation of people in various countries, documenting the introduction of plastic and lightweight prostheses.
The book includes photographs of people with prostheses in Nicaragua, Cambodia, Afghanistan, El Salvador and Mozambique. Entitled "Vidas Minadas," (Life in a Minefield) it is available for 4000 pesetas from the publisher, Manos Unidas.
For information, contact: CAMF (Andaluza Conferation of the Physically Disabled), c/Argote de Molina, 23 Ofc. C, 41004 Sevilla, Spain. Tel 95 421 0287; fax 95 421 0432; email camfsev@sistelnet.se

Appropriate Technology for People Who Cannot Communicate?

Editor's Endnote

While researching appropriate technology projects for this issue of One In Ten, it became clear there were not many assistive devices available for children with communication impairments in developing countries.
For children who are hard of hearing in developing countries, according to reports by the World Federation of the Deaf, the International Journal of Rehabilitation Research and Nu News (see Resources on page 24), the situation concerning hearing aids is bleak. In most developing countries, the daily reality is hearing aids that don't fit, or which cannot be locally repaired. Or no one can afford to buy new batteries, or there is no audiologist to train people in how to use the aids. Or all of the above. Most reports conclude that a sturdier, more appropriate aid should be produced and distributed through a mobile fitting and training system.
In the meantime, this means that for most hard of hearing and deaf children in developing countries, the most "appropriate technology" seems to be sign language.
Concerning children who are autistic and who do not develop or use speech at the same pace as others, there also seems to be little available in the way of appropriate technology. A recent letter to the editor of One in Ten attested to the advantages of "facilitated communication," but this relatively new method so far is available only in a few industrialised countries. Following are a few comments from the letter by a 24 year old Sri Lankan who is now living in the USA, and who had no way of communication until he was 18:
"Autism took away my voice and a world that equates muteness with stupidity took everything else. As an experiment, try keeping your mouth shut while they talk about you, telling your mother to put you away in an institution!
"I am a traveller ebulliently engaged on a unique journey between the quirky world of autism that I inhabit and the wearying world of 'normal' that I would like to explore.
"Ignorance and the lack of assistive technology hold us autistic people hostage. How many lives lost? Ignorance and prejudice still hold too many of us in that silent abyss."

Chammi Rajipatirama,
Maryland, USA

It is apparent that autistic children and youth are a group that are isolated by the lack of appropriate technology to provide them with a way to voice their needs, and participate in two way communication.
Children who are deaf or autistic are two groups who would greatly benefit from increased attention to appropriate technology.

Selected Resources on Appropriate Technology for Children

Organisations concerned with appropriate technology

? Appropriate Mobility International, P.O. Box 3198, 2601 DD Delft, Netherlands. Fax 31-15 2 12 22 70. Focused on primarily tricycles & mobility aids.
? CEPRI (Centre for the Promotion of Integrated Rehabilitation), Apto 5765, Managua, Nicaragua. Tel 505 2 663608. Self-help manuals in Spanish by and for disabled, especially spinal-cord injured persons.
? CVI-RIO (Centre for Independent Living of Rio de Janeiro), Rua Marques de São Vicente, 225 , PUC, Gavea, Rio, RJ, CEP 22453-090, Brazil. Tel 55-21 512 1088; fax 55-21 239 6547. Provides technical advice & publishes instructional manuals about devices in Portuguese. Develops equipment for children with all disabilities.
? Handicap International, 18 rue de Gerland, 69007 Lyon, France. Tel 933 47 861 1737. Mainly orthopedic equipment, appropriate wheelchairs, some for children.
? Healthlink Worldwide (formerly AHRTAG), Farringdon Point, 29-35 Farringdon Road, London EC1M 3JB, U.K. Tel 44 171 242 0606; fax 44 171 242 0041 ; email info@healthlink.org.uk. Publishes CBR News and booklets of technical drawings of simple devices.
? Healthwrights, P.O. Box 1344, Palo Alto, California 94302 USA. Tel 650 325 7500; fax 650 325 1080; email healthwrights@igc.org. Educational & self-help materials for community-based health care & rehabilitation in primarily English & Spanish.
? International Centre on Technology & Accessibility (ICTA), Box 510, S-162 15 Vallingby, Sweden. Tel 46 8 620 1700; fax 46 8 739 2152; email tomas.lagerwall@hi.se Collaborates in seminars & publishes reports on appropriate assistive technologies.
? People Potential, Plum Cottage, Hattingley Road, Medstead, Alton, Hampshire, GU34 5NQ, U.K. Design of aids, training in low-cost production of aids & devices, specialist in paper-based technology.
? Proximo (Program of Rehabilitation Organised by Disabled Youth of Western Mexico), Apto. Postal 9, San Ignacio, Sinloa 82900, Mexico. Community based rehabilitation programme; wide range of assistive equipment.
? RI Commission on Technology and Accessibility, Chairman: Michael Fox, Access Australia, 20 Clifford St., Mosman, Sydney NSW 2088 Australia; Tel 612 9960 4222; Fax 612 998 2490; Email: access@ozemail.com.au.
? Spastics Society of Tamilnadu, opposite TTTI, Taramani Road, Madras 600113, Tamilnadu, India. Tel & Fax 91 44 235 0047. Wide variety of assistive aids for disabled children.
? Teaching Aids at Low Cost (TALC), P.O. Box 49, St. Albans, Herts AL1 4AX , U.K. Tel 44 1727 853 869; fax 44 1727 846 852. Long established publisher of instructional materials, many related to disability.
? Volunteer Health Association of India, Tong Swasthya Bhawan, 40 Institutional Area (Behind Qutab Hotel), New Delhi 110016 India. Tel 91 11 651 8071/72; fax 91 11 695 3708. Publishes Indian version of Disabled Village Children.
? Whirlwind Wheelchair International, San Francisco State University, 1600 Holloway Ave., San Francisco, CA 94132 USA. Tel 415 338 6277; fax 415 338 1290; email ralfh@sfsu.edu or pfaelzer@sfsu.edu Network of appropriate wheelchair producers in 25 countries; collaborates with other producers of mobility aids.
? World Blind Union, c/o CBC ONCE, La Coruna, 18, 28020 Madrid, Spain. Tel 34 19 571 38 85; fax 34 19 571 57 77; email umc@once.es. International network of organisations of and for blind adults. Appropriate mobility training & technical aids for blind & visually impaired children.
? World Federation of the Deaf, Office of the President, P.O.Box 65, 00401 Helsinki, Finland. Tel. 358 9 580 31 (voice); fax 358 9 580 3576.

Related Training Opportunities

Following courses will include appropriate technology within topics covered.

? Planning & Management of Community Based Rehabilitation, offered in April & October 1999 in English. Contact: International Institute for Rehabilitation Management, Rue Conde, 45 230 Chatillon-Coligny, France. Tel 33 238 925050; fax 33 238 925108.
? Children in Especially Difficult Circumstances in Low Income Countries, 4 week course in April-May 1999. Contact: International Child Health, Dept. of Women's & Children's Health, Uppsala University, Entrance 11, S-751 85 Uppsla, Sweden. Tel 46 18 665997; fax 46 18 50 13; email: ich.education@ich.uu.se.
? Design of Equipment for Disabled People and The Child to Child Approach are two short courses offered by the Centre for International Child Health, Institute of Child Health, 30 Guilford Street, London, WC1N 1EH, U.K. Tel 44 171 242 9787; fax 44 171 404 2062; email: c.mason@ich.ucl.ac.uk

Selected Publications

There are numerous publications concerning appropriate technology and following are some which report on aids & devices for children.

? Appropriate Technology-an essential part of a CBR programme, by Tomas Lagerwall, 21 pages, published 1995. Available from ICTA, see address in section on organisations.
? Local Production of Appropriate Technical Aids for Disabled People, 32 page report from a Rehabilitation International workshop held in Kibwezi, Kenya in 1992, available from ICTA, as above.
? Nothing About Us Without Us: Developing Innovative Technologies For, By and With Disabled Persons, by David Werner, published 1998 by Healthwrights. Address under organisations. This unique resource contains 800 line drawings and 600 photos and is available for $15; plus $3 shipping in USA; plus $5 shipping outside USA. Published in English, book now being translated into Spanish. This book together with Disabled Village Children constitutes an Ideas Bank on developing appropriate technology.
? NU: News on Health Care in Developing Countries is a quarterly journal/newsletter on healthcare in developing countries. In the last few years, issues concerning disability were: Community Based Rehabilitation (2/95); Hearing Disorders in Childhood (1/98); Iodine Deficiency Disorders (3/94); and Eye Diseases in Childhood (1/97). Subscription & back issues available from Section for International Health- ICH, Entrance 11, University Hospital, S-751 85 Uppsala, Sweden. Tel 46 18 66 59 96; fax 46 18 50 80 13; email ICH.sekretariat@ich.uu.se Features short practical articles and results of research, then cites related addresses, conferences, training opportunities concerning each theme.
? Rehabilitation Technology in Community Based Rehabilitation: a Compendium, by S. Olney, T. Packe and U. Wyss. A 212 page collection published in 1994 by School of Rehabilitation Therapy, Queens University, Ontario K7L 3 N6, Canada.
? The Present Situation of the Use of Hearing Aids in Rural Areas of Sri Lanka, published in March 1998 issue of The International Journal of Rehabilitation Research. Back issues available from Dawson Back Issues Service, Cannon House, Park Farm Rd., Folkestone, Kent CT19 5EE, U.K. This article provides a concise overview of hearing aid production, distribution & use by children in developing countries. Clearly shows need for new & sturdier appropriate approaches.
? RESNA News: A bi-monthly publication of the Rehabilitation Engineering & Assistive Technology Society of North America, Suite 1540, 1700 N. Moore Street, Arlington, VA 22209-1903 USA. Tel 703 524 6686; fax 703 524 6630; email president@resna.org. This publication often contains technical drawings of aids you can make with low cost materials and features book reviews of low tech as well as high tech approaches.

ONE IN TEN
Volume 19 - 1998

EDITOR
Rosangela Berman-Bieler
email: rbbieler@aol.com

PROJECT SUPERVISION

Gulbadan Habibi, Child Protection
Officer, Programme Division, UNICEF
email: ghabibi@unicef.org

Barbara Duncan, Director of
Communications, RI
email: rehabintl@aol.com

UNICEF HOUSE
3 UN Plaza, New York, NY, 10017, USA, Fax: 1 (212) 824-6473

REHABILITATION INTERNATIONAL
25 East 21st Street, New York, NY 10010, USA, Fax: 1 (212) 505-0871