Nothing About Us Without US Part Four Chapter 31 1 of 11 http www dinf ne jp doc english global david dwe001 dwe00141 htm part4chap31 Nothing About Us Without Us Developing Innovative Technologies For By and With Disabled Persons PART FOUR WHEELS TO FREEDOM 197 CHAPTER 31 For Long Runs on Lousy Roads A Hand Pumped Tricycle ALEJANDRO S CHANGING MOBILITY NEEDS ALEJANDRO was 12 years old when he was shot through the spine by a policeman The events surrounding this brutal incident will be briefly described in Chapter 40 page 261 under the heading Defense of Human Rights Here we will focus on Alejandro s changing mobility needs and the equipment designed at PROJlMO to help him move about at the different stages of his rehabilitation and re entry into community life Alejandro first arrived at PROJIMO two months after his injury For a child who was completely paralyzed from the mid back down he was in good spirits Although he had been told he might never walk again he was eager to get back into action He progressed through using 3 forms of locomotion a gurney a wheelchair and a tricycle A GURNEY to Recover from Pressure Sores and Prevent Urinary Infections Like so many spinal cord injured young people who come to PROJIMO Alejandro already had deep pressure sores when he arrived The sores had begun to form while he was in the hospital Therefore his first mobility aid was a wheeled cot or gurney see Chapter 37 This allowed him to lie on his stomach taking pressure off the sores on his butt In the wheelchair shop the gurney was built to the boy s size At Alejandro s request a simple rack to hold a container with drinking water was made from a plastic gallon bottle and attached to the front of the gurney Handy access to drinking water is essential especially in a hot climate because one of the best ways to prevent bladder and kidney infection is to drink lots and lots of water For Alejandro to have his own water container with its attached plastic straw within easy reach wherever he went was an important and possibly life saving measure The gurney had another feature to help prevent urinary infections a built in free flow urinal see next page With spinal cord injury the person usually loses bladder and bowel control To get the urine out and prevent A catheter 2 17 2007 9 30 PM Nothing About Us Without US Part Four Chapter 31 2 of 11 http www dinf ne jp doc english global david dwe001 dwe00141 htm part4chap31 wetting the clothing a catheter thin tube is often used Whenever possible however it is important that spinal cord injured persons avoid using a permanent Foley catheter see box at right If the catheter is left in continuously it is likely to cause urinary infections see page 147 WARNING For persons with a spinal cord injury or spina bifida pressure sores and urinary infections are the most common causes of death 198 To help Alejandro keep dry and yet avoid the need for a permanent catheter his gurney had a hole cut out of it in the position of his genitals This way he could urinate into a container hanging under the gurney without needing a permanent catheter The hole also prevents injuring the genitals which because they lack feeling can be easily injured Gurneys can be built with a potty or other removable container attached under the hole in the gurney Or a large funnel can be mounted under the hole with a plastic tube that drains into a urine bag A Wheelchair to Take Part in Village Life Partly because he was so active on his gurney Alejandro s large pressure sores healed quickly Within 2 months he was ready for a wheelchair He experimented with different models at PROJIMO until he had an idea of what would work best for him The wheelchair builders then took his measurements and built a version of the Whirlwind wheelchair see Chapter 30 In his new chair Alejandro was extremely active and he took part in a wide variety of adventures with other youth in the village including swimming in the river At first Alejandro used an air filled cushion on his wheelchair to prevent pressure sores But even with the cushion and in spite of repeated advice from Mari and others to often lift his butt off the seat Alejandro began to develop new sores His younger brother Neto with guidance from the PROJIMO team helped him make a personalized cushion out of layers of cardboard glued together with white glue see Chapter 27 Before the glue was dry they sprinkled the cardboard with water to make it softer Then Alejandro sat on the cushion so that it would take the shape of his backside Finally they cut an oval out of the back part of the cushion to further reduce pressure over the butt bones where the pressure sores often form To make the cushion softer they covered it with a layer of fairly dense foam rubber The whole thing slipped into a protective cloth pillowcase With his cardboard cushion plus daily treatment of the sores with honey and sugar and remembering to shift his weight regularly Alejandro s sores healed rapidly 2 17 2007 9 30 PM Nothing About Us Without US Part Four Chapter 31 3 of 11 http www dinf ne jp doc english global david dwe001 dwe00141 htm part4chap31 Time passed When Alejandro first came to PROJIMO the team had realized that the treatment of his pressure sores would take months Because proper management of his sores at home was unlikely they arranged for him to stay in Ajoya where PROJIMO is based and to attend the village school For a time he did well but eventually he dropped out and got married to a girl of his own age 14 years old He took his young wife to his parents home but life was difficult His parents drank a lot and neither was employed Often the family went hungry Alejandro began to think of how he and his young wife could have a better future 199 A TRICYCLE to Continue Schooling Fortunately for Alejandro and his family PROJIMO has relations with Liliane Fonds a non government charity in Holland that assists individual disabled children and their families Liliane knows that a family s economic survival is basic to a disabled child s survival and well being A little seed money from Liliane helped the family begin to earn a living through the informal economy Marcelo at PROJIMO built a metal cart for frying and selling tacos which the family could put on a street corner in the evening and earn a modest income Later Liliane financed a strong pedal powered tricycle with a big carriage area With this Alejandro s brothers who could find no formal employment rode through the