Nothing About Us Without US Part Four Chapter 36 1 of 4 http www dinf ne jp doc english global david dwe001 dwe00147 htm part4chap36 Nothing About Us Without Us Developing Innovative Technologies For By and With Disabled Persons PART FOUR WHEELS TO FREEDOM 231 CHAPTER 36 Paraplegics Who Walk Where Wheelchairs Won t Enter India Innovations For By and With Spinal Cord Injured Persons in India Centers for rehabilitation in the United States and many other countries encourage most spinal cord injured persons to use wheelchairs as their primary way of moving about Except for a few persons with low level or incomplete injuries walking is considered too difficult This emphasis on wheelchair riding with ease rather than walking with difficulty reflects the current trend in rehabilitation The goal of maximum function is placed before normalization even if this means doing some things abnormally differently from how most people do them Today many spinal cord injury self help groups strongly encourage members to Accept yourself as a wheelchair rider and get on with your life Individuals are gently discouraged from putting a lot of hope or energy into learning to walk again Instead they are urged to join in the fight for accessibility and social acceptance of wheelchair riders I was therefore surprised by the approach of the rehabilitation center linked with the Christian Medical College in Vellore India which I visited in 1995 during a UN workshop on Indigenous Assistive Devices for Disabled Persons At the center many paraplegic persons were being vigorously trained to walk with leg braces and elbow crutches Started in 1934 by a visionary woman doctor who was paralyzed in a car accident the Vellore Center is recognized as the country s best most comprehensive spinal cord injury program I was impressed not only by the quality of services and innovativeness of activities but by its human warmth and convivial spirit The center s outstanding staff made a point of including disabled persons in the problem solving process as friends co workers and equals Innovations at the center included a traditional village complete with thatched huts and vegetable gardens Here disabled villagers lived and relearned the skills and the activities of daily living in a typical rural environment We saw persons working and moving about there on crutches or sometimes crawling with knee pads but few used wheelchairs At first I was concerned by the emphasis on walking rather than on wheelchair use In recent years India s government has launched a major program of wheelchair production In cities at least increased attention is placed on wheelchair access though there continues to be a huge unmet need I asked the Director Why such a strong emphasis on walking Wouldn t it be more realistic to teach most paraplegic persons to use primarily wheelchairs Not at all he said Most spinal cord injured persons who pass through our center come from remote villages where wheelchair use is 2 17 2007 9 32 PM Nothing About Us Without US Part Four Chapter 36 2 of 4 http www dinf ne jp doc english global david dwe001 dwe00147 htm part4chap36 almost impossible You will see for yourselves when we go to a village this afternoon He was so right 232 Visit to an Independent Sugar Cane Farmer Who is Paraplegic We visited a paraplegic man on the outskirts of a small village To reach his homestead we drove the last 2 or 3 miles over a narrow muddy rutted country road difficult to travel even in a Jeep For the last 200 yards we had to travel by foot We quickly realized the limitations of a wheelchair in such places On arrival we made our way through a muddy field behind a large mud house There we saw a man standing next to a small rustic gasoline motor run sugar cane mill He was skillfully pushing armfuls of green cane into the rolling jaws of the machine Helping him was a boy who we learned was his son We had to look twice to realize that the man was disabled He wore full leg braces and arched his body backwards to stand and work with both hands without having to support himself with his crutches RAM the man at the mill saw us approaching He bounded over a pile of milled cane and greeted us warmly He was dark muscular and had a look of uncrushable self assurance He appeared to be in excellent health better than many people in India s hunger ridden rural areas We observed Ram doing a variety of daily chores ranging from clearing pathways to leading his cow to pasture across the narrow dikes of a rice field Totally self sufficient he provided for his wife and children through his own hard physical labor He had the innovativeness of one who since childhood has lived in a difficult environment where dexterity and creative ingenuity are essential skills for staving off hunger and for survival 233 A pit latrine Ram s innovations included a pit latrine with a wooden toilet seat unusual for rural India where the custom is simply to squat He had built it next to a cement covered mud brick water trough The pit was over 2 meters deep in order to avoid contamination of the surface water that fed the trough which ran through a shallow ditch from a spring 200 yards away Home grown castor oil catheter lubricant Ram had also found a way to catheterize himself at low cost Like most spinal cord injured persons who lack normal bladder control to drain out urine he needed to pass a catheter clean rubber tube through his penis into his bladder every few hours Rubber catheters can be cleaned and reused hundreds of times see Chapter 25 on catheterization But for each use they need to be lubricated oiled And commercial medical lubricants such as KY Jelly are expensive To save money Ram had stopped using costly medical lubricants and had begun to use castor oil But he soon 2 17 2007 9 32 PM Nothing About Us Without US Part Four Chapter 36 3 of 4 http www dinf ne jp doc english global david dwe001 dwe00147 htm part4chap36 learned that commercial castor oil was contaminated causing repeated urinary infections So he planted his own castor trees harvested the beans and pressed them carefully under clean conditions to extract the oil With this clean home made oil he explained he now had almost no problems with urinary infections A two rear wheel drive tricycle For most of his farm work Ram moved about with full leg orthopedic braces and crutches made at the rehab center in Vellore But for travel into town he used an all terrain tricycle that he had designed and built with