Nothing About Us Without Us PART FOUR Introduction 1 of 5 http www dinf ne jp doc english global david dwe001 dwe00137 htm part4intro Nothing About Us Without Us Developing Innovative Technologies For By and With Disabled Persons 169 Part Four WHEELS TO FREEDOM 170 2 17 2007 9 28 PM Nothing About Us Without Us PART FOUR Introduction 2 of 5 http www dinf ne jp doc english global david dwe001 dwe00137 htm part4intro INTRODUCTION TO PART FOUR Designing Mobility Aids to Meet Individual Needs Wheelchair riders understandably get upset when people say they are wheelchair confined Nobody they say calls a bike rider bicycle confined For someone who cannot walk a good wheelchair can be a doorway to freedom It is liberating not confining But if assistive devices including wheelchairs are to help disabled persons reach their potential they must be carefully selected designed and adapted to meet each individual s unique combination of needs In this book s Introduction we saw how standard wheelchairs from the North donated to 4 women in different countries and circumstances proved unsatisfactory This was because the providers did not take into account the particular needs and wishes of each individual Nor did they consider cultural factors living conditions local terrain available transport or questions of accessibility By contrast we saw much better results when such factors were taken into account and when needs and possibilities were discussed with the disabled person and family as part of a creative problem solving approach Even when persons with the same disability live in the same town their needs for equipment may vary depending on their lifestyle options for schooling or work and other factors Cost and convenience must also be considered For example before the wheelchair builders at PROJIMO make a chair for a person they ask if the chair will need to be transported in a motor vehicle and if so what kind To fit into a passenger car it helps if the chair can be folded But if the chair will be carried in the back of a truck folding may be less important For many families keeping the price down may seem more essential A non folding chair can be made at lower cost is lighter weight and is often more trouble free In this part of the book we look at the needs of different persons not only for wheelchairs but also for other equipment in the realm of wheeled mobility This includeswheeled cots gurneys trollies and hand powered tricycles Our emphasis is on development of a particular mobility aid to meet the specific needs circumstances and possibilities of an individual user For this reason we often describe the situation in story form and may sometimes include the development of other innovations for the same person Wheels work for getting around only when there is access to where you want to go This means everything from sufficiently smooth firm walkways and roads to ramps and in some cases lifts or elevators In Chapter 35 we describe a low cost elevator with gravity lift In this book we do not include detailed instructions on design and production of standard wheelchairs Four very different wheelchair designs are in the book Disabled Village Children Details for building the excellent low cost Whirlwind Wheelchair are found in Independence Through Mobility by Ralf Hotchkiss see p 343 Here we do however include some of the most recent breakthroughs in the Whirlwind design in Chapter 30 171 OOPS THINK AGAIN The Importance of Deciding With and Not For the User 2 17 2007 9 28 PM Nothing About Us Without Us PART FOUR Introduction 3 of 5 http www dinf ne jp doc english global david dwe001 dwe00137 htm part4intro One day two persons from PROJIMO visited the home of a disabled child in the city of Mazatl n The child s mother told them about a neighboring family with two children who could not walk They re smart little kids she said but their bodies are too weak to walk Together the mother and the PROJIMO workers went to visit these neighbors They found the two children alone in the house with a baby sitter The sitter was friendly and invited the visitors to examine the children who were playing on the floor It appeared that the children had an inherited muscle weakness perhaps some form of muscular dystrophy MARCOS the older child was six years old He pointed proudly to a big wheelchair in the corner Put me in my car he insisted The wheelchair donated by a government family aid program was adult size The small boy sat in it with his feet sticking out over the front edge of the seat He tried to move the chair by pushing on the wheel rims but had to stretch his arms far apart to reach them The chair was so heavy he could barely move it We have a small light wheelchair in Ajoya that should fit him much better said one PROJIMO worker We will bring it on our next trip And so they did The chair fit Marcos well Although his arms were quite weak he could move it about slowly in places where the ground was level and fairly smooth On this visit the children s mother was home The PROJIMO workers suggested that she trade the big chair for the small one But she insisted on keeping the big one The PROJIMO workers explained all the reasons why the small chair was more appropriate Marcos sits in a better position He can move it by himself It is lighter and takes up less space And because the seat is lower with practice he may learn to climb into and out of it by himself The children s mother listened politely then said But you don t understand For us the big chair is best You see I don t have a husband I sell tacos in the street market Often I don t have any money to pay a baby sitter So I have to take both children with me to the market In the big chair I can seat both of them together That was something the PROJIMO workers had not thought of Given the circumstances the big chair meets the family s needs better than the small chair From this experience the PROJIMO workers learned the importance of including the family from the beginning in the problem solving process They yielded to the mother s choice of the over sized chair But Marcos was unhappy He had fallen in love with the small chair which he could move around by himself It would be hard to take the small chair back once the boy had tried it In the end the team made a costly but caring decision The family kept both chairs Marcos was of course delighted 2 17 2007 9 28 PM Nothing About Us Without Us PART FOUR Introduction 4 of 5 http www dinf ne jp doc