Feedback on Workshops and Evaluations Facilitated in Other Countries
As is usually the case in big international conferences, while many of the presentations were excellent, a great number of repetitive generalizations were delivered by a long parade of speakers. The most worthwhile part of such conferences often is the informal meeting of people and exchange of ideas that takes place in the intermissions and hallways. And this Congress was no exception
For me, one of the most valuable aspects of the Oaxaca Congress was the chance to reconnect with friends and representatives from countries and programs I’ve previously visited throughout Latin America and the Caribbean. Through such encounters I was able to get updates and feedback on CBR initiatives where I have facilitated workshops or evaluations over the last decade. These included consultations and evaluations in Honduras, Guatemala and Cuba, and Assistive Technology Workshops in Columbia, Peru, Ecuador, Bolivia and Brazil.
On the whole, the feedback I got in this way was very encouraging. I will mention a few examples:
I met with the new coordinator, for Handicap International Belgium, of the first Community Based Rehabilitation program in Cuba, located in the Province of Granma. She told me that the participatory evaluation I’d facilitated there in May 2004 (see Newsletter #52) had led to a number of substantial improvements. For example, among my recommendations, I had suggested that the families of children with intellectual disability have stronger representation and leadership in the program. Now, she said, this is happening. Among other things, the program has organized a campaign for the mainstreaming of such children in schools. Likewise, Child-to-Child activities have been introduced, so that schoolchildren will be more welcoming and helpful to a child who is different. The new coordinator urged me to come back for a visit and to conduct a participatory technology workshop.
At the Congress I had a good discussion with Estella Ortiz, coordinator of nearly 40 local mediators for Stichting Liliane Fonds in Holland, in the southern part of Colombia. Estella participated in a CBR Assistive Technology workshop I facilitated in Monteria in 2008 (see Newsletter #62). She told me since my visit she has organized a number of similar workshops with groups of mediators and families of disabled children, and that these have helped participants take a more participatory, innovative approach to problem solving and assistive technology.
It was my great pleasure to meet at the Congress a young woman by the name of Gloria Pimentel, from Recife. Gloria has just graduated with a degree in “Public Service” from the Catholic University in Pernambuco, where her thesis was on Community Based Rehabilitation. Gloria’s infatuation with CBR can be traced back 14 years to a workshop on CBR that I facilitated in Recife in 1996 for CORDE, a disability service program of the Brazilian government. (See Newsletter #34).
Gloria had been raised in a home for abandoned children started by one of the participants in the Recife workshop. This was Father Eduardo Figueroa, a Catholic activist whose life work with the poor and oppressed reflects his ties to the Theology of Liberation. Some of the children in the home Padre Eduardo ran were disabled, and he wanted to help them become included in the community.
At the time Father Eduardo attended my CBR workshop, Gloria was just 5 years old. As an infant she had been abandoned by her parents—whom she had never known—and Father Eduardo had taken her in. So Gloria grew up in the children’s home at the time when Padre Eduardo was experimenting with aspects of Community Based Rehabilitation in the surrounding communities. As a child she had read my books Disabled Village Children and Nothing About Us Without Us. Since she grew up in company with the disabled children in the Home, it was only natural that CBR became a part of her life and her dreams.
In her thesis, on “The Contribution of Social Service to the Efficacy of Community Based Rehabilitation” Gloria advocates an empowering approach where CBR addresses the underlying questions of equity and equal opportunity, not just for those who happen to be disabled, but for everyone. The ultimate objective of CBR, she asserts, is “a construção de uma nova sociedade, mais justa e igual” (the construction of a new society, more just and equal.”)
Ecuador—Feedback on a CBR Participatory Technology Workshop: A Message from Jeferson
At the CBR Congress, the most heart-warming feedback from my sojourns in other countries came from Elizabeth Terranova, coordinator of a grassroots CBR program in Guayaquil, Ecuador. In April, 2009, I had facilitated an assistive technology workshop there. One of the children whose home we visited was a 13-year-old boy, Jeferson, who has cerebral palsy. A group of participants, together with his family, had made assistive devices for him during the workshop. The combination of spasticity and constant uncontrolled movement (athetosis) impedes the boy’s control of his body so much that his mobility, hand-use, and self-care skills were extremely limited. He was unable even to crawl, and struggled to stay upright in his wheelchair. Although he has some trouble with speech, he is intelligent and perceptive. Despite his struggles with his unruly body, he has a wonderful spirit. He is eager to try anything that might help him do more for himself and become more independent. I took a liking to him at once, and the feeling was mutual.
We found that Jeferson’s inability to do much for himself was greater than need be, in part because his very loving family did almost everything for him. Our challenge was to help him find ways to do more for himself.
In our exploration of Jeferson’s wishes and possibilities, the two things he said he wanted most were to get dressed and to go to the bathroom by himself. At present, his mother had to carry him across a gravel patio and place him on the toilet. As he got bigger she began to develop a back problem.
But a possible solution was at hand. Although the boy couldn’t lift himself onto a standard toilet, while crouching on the floor he could lift up his butt.
So in the workshop he and his group designed a “low-rider commode.” They cut a hole in the seat of a plastic chair, sawed off the bottom 2/3 of its legs, and for stability put leg stumps into sand-filled plastic bottles. With a bit of help from his mother, but no heavy lifting, Jeferson could get onto the commode and use it. He was determined to learn to do it without help. Also, with practice he hoped he could learn to take off and put on his clothes.
But what Jeferson most longed for was a computer. Every day his brother pushed him in his wheelchair to school, and he was learning a lot. But his efforts to write were very frustrating. He had trouble holding a pencil, and before he could complete a letter his hand would jerk this way or that. But with effort he could punch the keys of a computer, and perhaps with practice he could learn to express himself with the written word. That could be the window to a whole new way of communication. Jeferson was so excited with his dream of a computer that we all agreed that an effort should be made to get him one.
The workshop in Guayaquil was an empowering experience for Jeferson and his family, which opened up many new possibilities. But it was just a start. Where it would lead remained to be seen.
News from Jeferson a Year Later
In the year that passed after the Guayaquil workshop I had received bits of news but no detailed feedback. Then—at the CBR Congress Oaxaca this March—I was cheerfully greeted by Elizabeth Terranova, the CBR Coordinator in Guayaquil, who handed me a small package “from a friend!” It contained a typed letter and a CD video.
The letter begins, “Hola Dr. Bewner. Soy Jeferson. tengo mucho que contarle,” and he tells me all the things that he has learned to do thanks to the ideas and devices that had come out of the workshop. “My mother fixed up a room and now I can go to the toilet myself, brush my teeth,
bathe myself, and eat without help.” In the video (filmed by the local CBR worker) Jeferson—who now speaks more clearly—eagerly demonstrates some of his new skills. He shows how he can now climb off his bed onto the floor and (using homemade kneepads) tumble and roll himself to wherever he wants to go. He proudly shows how he can take off his shirt, which—given his constantly writhing body—is an impressive gymnastic feat.
Also in the video he jubilantly shows off his new computer, which he is passionately learning to use. The computer was donated through a local radio campaign organized by the CBR team and friends.
At the end of his letter, Jeferson says:
I have now finished grade school and am entering el bachillerato (high school). I want to study informática and be able to connect with you by computer so I urge you send me your email address. Affection and hugs. Chao.
It is this kind of personal, heartfelt feedback from those I have connected with that makes this kind of hands-on workshop worthwhile.