Guatemala Hosts Hands-On Conference of Mobility Providers
By Marc Krizack (krizack@disabilitypolicy.org)
"It's a chance to get away from your job and change lives too," is how conference organizer Mark Richard described the second annual conference of the Association of Mobility Providers (AMP) , held in Chimaltenango, Guatemala in November 2000.
AMP was founded in 1999 by a group of faith-based organizations involved in refurbishing used wheelchairs in the US and shipping them around the world. The purpose of the organization is to promote communication among all those seeking to provide wheelchairs in the developing world, whether donated from the US or built locally. It is not limited to faith-based organizations. "Our goal is to support each other and learn from our successes and also learn from out mistakes," said Richard, who is International Operations Manager for Hope Haven, Inc., a Christian social services agency based in Rock Valley, Iowa.
The conference was more a series of hands on workshops than classroom style lectures." These (conference attendees) are not people who are going to be happy sitting in a room. They are happy rolling up their sleeves, building seating systems, fixing chairs, doing custom positioning and seating. These are people who want to be in the field. We get our satisfaction bringing joy and mobility to people. It's an addiction," said Richard.
Home visits
Conference attendees visited group homes housing 50 to 100 orphaned or abandoned disabled children as well as the family homes of children who had received a donated wheelchair in years past. Many of these disabled children still living at home had lost their fathers in Guatemala's civil war of the 1980's and 90's. The purpose of these visits was to see the conditions under which the wheelchairs are used and to learn how the wheelchairs had changed the lives of those who had received them and of their families.
Mark Richard with Guatemalan family
Whirlwind Wheelchair
Conference attendees also visited Transitions, a transitional living home for wheelchair riders which also has its own wheelchair repair business. Transitions is currently working with Whirlwind Wheelchair International to develop production of the Whirlwind, a wheelchair that is appropriate for the rough conditions of Guatemala. Attendees also visited Bethel, a wheelchair repair shop run by wheelchair riders who also refurbish chairs donated from the US, and a shop in Nebaj in the northwest highlands, which is planning on starting its own wheelchair buildng shop. In Quetzaltenango, attendees visited the Hermano Pedro home for disabled kids, spending an afternoon making repairs and adjustments to pediatric wheelchairs which had been previously donated.
"What I'd like to do," says Richard, " is promote the shops to specialize. The Antigua shop is more of a seating clinic; Chimaltenango is more of a refurbishing shop; Nebaj is more rugged terrain and could make appropriate technology wheelchairs for the extreme rural highlands where there are no paved roads for 20 miles."
Workshops with indigenous mothers of disabled children
Two therapists at the conference conducted workshops at the Fundabiem outpatient rehabilitation center in Chimaltenango. Darlene Perez Brown, Assistant Professor in the Department of Occupational Therapy at Winston Salem State University in North Carolina, worked with Fundabiem staff and mothers of disabled children on modern techniques for promoting sensory-motor development and how to help the kids become more active through positioning, balance and weight-bearing. Although the Fundabiem staff was aware of these techniques, they tended to practice more passive therapy that does not involve the child in his or her own therapy. "They just needed to see this (active therapy) being done in order to really understand it," noted Perez-Brown. Perez-Brown, who is currently developing a course in cross-cultural competency at Winston-Salem, was particularly excited about how she was able to work with Guatemalan Indian mothers to modify the traditional way they carry their infants so that the child is required to use its own muscles to maintain balance. In the traditional way, the mother's clothing is wrapped around the child. Perez-Brown's method holds the baby in an upright position by criss-crossing the traditional wrap. "I think that the way we need to work (in developing countries)," says Perez-Brown, " is to always acknowledge what they (the local people) are doing and taking it one step further."
Workshop with community based health care workers
From Cali Colombia, Delia Constanza Serpa-Anaya, a physical therapist, did a workshop with community based health care workers. Serpa-Anaya discussed fetal alcohol syndrome and resulting disabilities. She described for a class of 40-50 health care workers how to recognize the syndrome, the need to warn the parents, and how to get appropriate care. Serpa Anaya also worked with Fundabiem physical therapists on issues involving children with cerebral palsy, including how to normalize muscle tone to facilitate normal movement patterns.
Seating clinic
One entire day was spent giving a seating clinic on how to build a seating and positioning system from scratch. Two kids with cerebral palsy from Antigua, a few miles down the road, were brought to the Bethel shop in Chimaltenango. Workshop participants learned how to turn a standard sling seat chair into a chair with a positioning system. They learned to troubleshoot, brainstorm, and build a seating system with available parts which included seats, seat backs, lateral supports and hardware brackets.
Organized wheelchair distributions
A second day was devoted to distributing 60 wheelchairs to clients of the Fundabiem outpatient rehabilitation center. The chairs included everything from standard sling seats for the elderly to tilt-in-space pediatric chairs. "This was a well-planned distribution," emphasized Richard. "Conference organizers knew in advance who was coming, so they were able to have the right chairs." The donated chairs and accompanying cushions had been shipped down earlier or carried down by conference participants. They were refurbished in the Bethel shop in Chimaltenango according to the needs of the ultimate recipients.
A further distribution took place following the conference. Richard and colleagues took 27 wheelchairs to mainly elderly people in Nebaj. Said Richard, "That was just the icing on the cake to be able to go up to Nebaj, which was probably affected by the civil war more than any other part of Guatemala, with its poverty, aftermath of war, lots of widows and kids without parents."
Sports program
Wheelchair Sports International's Peter Arballo, himself a wheelchair rider, organized a sports program which included clinics on basketball, archery, discus, shotput, javelin, and tennis. About 30 local wheelchair riders participated in Arballo's clinics. Arballo also demonstrated isometric exercises using elastic bands of varying resistance known as Therabands. The exercises are designed to strengthen the rotator cuff and to prevent or retard the onset of inflammation of the shoulders, a common problem faced by people who have pushed their own wheelchair for many years. Arballo, who has been disabled since an auto accident in 1959, was a gold medal winner at the 1968 Paralympics held in Tel Aviv. He pursues this work as part of his Christian mission. For this conference, Arballo arranged for 6 high end sports chairs to be donated to the Antigua girl's team because, as Mark Richard noted, "it is usually the men who get everything and women nothing."
Personal Energy Transportation (PET)
Mel West, a retired minister of the United Methodist Church, now living in Colombia, Missouri, became involved with AMP one evening two years ago when he answered a knock on the front door to find Mark Richard on the other side hoping to meet him. Richard had been visiting a friend in the neighborhood and learned that West was also involved in mobility issues for people in developing countries. In fact, West is one of the designers of a hand-cranked cart known as the PET (Personal Energy Transportation) which has been distributed around the world. "I was just thrilled to see the project (AMP) is working," exclaimed West. "I came home shouting their praises. To see the interest of the local people ... it's a very responsible operation. There was every brand of theology there, but it didn't matter. I work ecumenically, and the theology doesn't matter when you focus on the needs of the person," he said.
West has worked with organizations such as Habitat for Humanity (housing) Heifer Project (animal husbandry) ECHO (food production), SIFAT (literacy) and now AMP (mobility), all working in developing countries. "What we give is the gift of mobility," remarked West. "This is really a justice issue. We believe everyone has the right and no one should be forced to scuttle around on the ground."
Next conference
Richard thinks that next Fall's conference may be held in Cuenca, Ecuador. He sees the AMP conferences as an opportunity to connect people who are involved in the same activity. "So many people are doing it and don't know someone else is doing it either in the same country or neighboring countries, so the more these people can get together and offer their support to each other, the better. No one can have all the expertise. I like this type of conference, this type of hands-on real world experience," said Richards.
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