“One outstanding feature of the Cuban CBR Project is the central role of disabled people themselves in management, leader- ship, and to some extent, service provision.”

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In May, 2004, Handicap International Belgium (HIB) invited me (David Werner) to do an external evaluation of Cuba’s first experiment in Community Based Rehabilitation (CBR). The year before I had evaluated a CBR program for HIB in Cartegena Colombia, and the Cuban project’s new director, Ana Calvo – who had accompanied me Cartegena – had urged me to do the evaluation in Cuba. Eager to get back to Cuba, I jumped at the chance.

The idea behind CBR is to empower disabled persons, families, and communities with the knowledge and skills to meet many rehabilitation needs in their own homes and communities, at low cost using local resources. CBR is seen as a complement, not a substitute, for institutional services. Indeed, the success of CBR often depends on the quality and extent of the backup professional services. Another objective of CBR is to shift from the “therapeutic model” of institutionalized rehab with strong biomedical focus to more of a “social model” wherein individual therapeutic measures are balanced with social action. The goal is inclusion and equal opportunities (normal schooling, jobs, etc.) within society.

Several years ago, HIB approached the Cuban Public Health Ministry (MINSAP) with the proposal to start a pilot CBR project. Convincing the Ministry that there was a need for CBR was not easy, since Cuba prides itself on its outreach of professional services even into remote communities. They saw CBR as a second best alternative for countries unwilling or unable to invest in professional services for poor communities.

But the timing was right. In the last few years – in part due to the constraints of the Embargo – Cuba has been rediscovering the importance of giving more responsibility to families and communities in meeting their own needs. They see this as a way of complimenting professional services, not replacing them. A decision was reached to start a CBR Pilot Project in mid-2001. But the gears of centrally controlled decision making turned slowly. The Project finally began in January 2002, six months behind schedule.

The Pilot Project was started in the Province of Granma, named after the small boat where Fidel, Che and their small band of revolutionaries first landed, determined to liberate Cuba from the US-supported dictatorship of Batista. In Granma two municipalities were chosen for the CBR Project: Guisa and Bartolome Maso. These were chosen because they extended into the far reaches of the Sierra Maestra, home to some of the poorest and least accessible communities on the island.

One outstanding features of the Cuban CBR Project is the central role of disabled persons themselves in management, leadership, and to some extent, service provision. Too often CBR programs are run and managed by non-disabled persons. PROJIMO in Mexico is a notable exception.

In Cuba there are 3 national Associations run for and mostly by disabled persons. These represent blind, deaf, and physically disabled persons respectively. In the CBR initiative, the core groups at the national, provincial, and municipal levels include representatives from 6 organizations: the Ministry of Public Health (MINSAP), the Ministry of Education (MINED), the Ministry of Work and Social Services (MTSS), and the three Associations of Disabled Persons. I was delighted to see representatives from these 3 disability associations working along side the ministry reps and playing a key role in the planning, training, and community-level services of the CBR Project.

A second outstanding feature of Cuban CBR Project is the highly dedicated role and perseverant role of the community-level frontline volunteers. The key actors in the CBR program at the home and community level are briefly-trained volunteers appropriately called “Activistas.” In Cuba I was amazed to see eagerness, energy and continuity with which these community rehabilitation Activists worked. Many put up to 20 hours a week into their work, which includes home visits to disabled persons, as well as “sensibilizacion” (awareness raising) activities in the villages.

Home visits – a key part of CBR – are no small task in the Sierra Maestra. Some disabled persons live at the end of precarious footpaths deep into the wilderness. One Activista, Wilberto, twice a month walks 20 kilometers each way to visit a man who had a compound fracture of his leg. The man had received comprehensive medical care. Carried on a stretcher 20 km. to the Policlinico in the municipal seat of Bartolome Maso, he been given free surgery and the early stages of rehabilitation. But he desperately wanted to get home to his family, and left early. The long distance for his return rehab appointments at the polyclinic made continuity difficult. He developed contractures and two years after his accident he still not regained his ability to walk – until Wilberto began to visit him. Wilberto instructed the man and his family in home exercises to restore range of motion and strength of the leg. Today the man no longer has to send a child to look for his mule in pasture. He goes himself.

Like so many of the other rehab Activistas I talked with in Cuba, Wilberto welcomes the challenge of his volunteer work. He feels deep satisfaction in the benefit he provides, and enjoys people’s appreciation of his efforts. Here, Cuba clearly has an advantage. In many CBR programs I’ve seen, including the one in Cartegena, the attitude of the CBR volunteers in poor communities tends to be far less sanguine. The same good will exists. Most would like to do more to help disabled persons and their families. But the time they can devote to their volunteer work is so minimal they never get enough experience to acquire the sound judgment and problem-solving skills needed to provide competent technical advice and assistance. The demands on them just to feed and care for their own families are such that they simply can’t find the needed time for their CBR activities. Quality of service suffers accordingly. This problem of poverty-constrained volunteers, in my opinion, is the Achilles heel of most CBR programs. And the resulting inadequacy of technical services helps explains the widespread skepticism regarding CBR – including that encountered initially in Cuba.

But Cuba is different. While widespread poverty exists, it is not as extreme or decapacitating as in many places. One way or another, everyone’s basic needs are met. People don’t have to struggle to survive. They don’t have to worry about paying the medical bill when their child gets sick or the tuition if a son or daughter wants to continue their studies. Because these basic needs are met, people in poor communities have both the time and the community support to help one another, and love doing so. This give real potential for high quality CBR services in Cuba.

A third outstanding feature of Cuban CBR Project – which again distinguishes it from others – is the strong active involvement of a whole network of official health and welfare services, especially at the community level. I was impressed how well the representatives from different service sectors cooperate and work together with their disabled colleagues in the Associations of Disabled Persons. This interaction is aided by the fact that many Activistas, some disabled themselves, also hold positions in government services at the community level: as teachers, nurses, special educators, family counselors, members of women’s or youth or farmworkers’ associations. This gives them close ties with a range of public services agencies, on which they can call for backup or referral when needed. Consequently the multisectoral support system, which is often a weak point in many CBR programs, in Cuba works refreshingly well.

Sensibilizacion

Similar to many CBR programs, I found the social aspects of the Pilot Project in Cuba are the strongest, while the technical or therapeutic aspects are weaker. The Cuban Project conducts many innovative “sensibilization” activities in the villages to raise people’s awareness about disability. The theme is fuller inclusion and equal opportunities. I was delighted to see that many of the colorful posters displayed in schools and public buildings are based on illustrations from my books. Two posters display the drawings and slogan LOOK AT MY STRENGTHS NOT MY WEAKNESSE that originated in PROJIMO in Mexico.

In Victorino, a village in Guisa, I had the privilege of watching the first presentation of a disability awareness-raising puppet show performed by a traveling village theater trope sponsored by the CBR Project (mainly HIB). The lively skit – titled “El Tesoro Laboral” (roughly translated as The Treasure of Manual Labor) portrays a boy amputee who named Juan who is at first overprotected by his aging father, until the boy takes the lead in making the farm produce. To watch this puppet show, school children came from miles around, some on foot from kilometers back up into the mountains. The skit kept them spellbound.

Following the puppet show was a “participatory discussion” that gave the children a chance to say what they’d learned. Problem was that when the kids were hesitant to speak. So first one man stood up and gave a long speech on what the children should have learned. Then another man did the same. We were now in the community “Television Hall” that with a hundred sweaty kids was hot as Hades. They sat obediently, yawning and fidgeting. It was much like school anywhere. The kids had little say.

I only found out what some of the children had learned from the “sensibilizacion” activities by talking with a few of them privately at snack time. They said they’d learned they should “provide care” for disabled children and “assist them.” But nothing about regarding disabled children as friends or playmates, or including them in their games. It struck me that Cuba’s effort to evolve from a top-down dependency-creating system to a more participatory approach to meeting needs still has a long way to go. Don’t we all!

Then I witnessed something truly inspiring! It was the schoolchildren’s turn to present. After dutifully sitting through the typical nice routine of poems and songs and recitals about “accepting people with disability” and “everyone loving each other,” something astounding happened. A group of young children who had hiked down the mountain from a remote village called Los Gigantes stood up before the crowd. In the front row of seats sat a line of deaf persons, trying not to fall asleep. (Deafness is common in the small mountain villages, due to inbreeding. In some cases whole families are deaf.) The Los Gigantes schoolteacher, who is also a CBR Activist, rather than just teaching her class about disability, had taught them the rudiments of sign language. One child after the other began to “talk” to the deaf folks in sign. The deaf people came to life and eagerly began signing back to the students. It was a real breakthrough for everyone.

Following this experience, I discussed with the CBR team the Child-to-Child program that we have been active in developing in Mexican villages. New ideas were forthcoming for mainstreaming deaf children into the normal schools in Cuba, where mainstreaming is still a relatively new idea. All disabled children have the opportunity for schooling, gauged to their potential. But the focus is still on separate special schools, with boarding facilities for those who live far away. Special educators I spoke endorse the “separate but equal” approach, and feel that disabled children especially deaf ones will be too isolated in the normal classroom.

However, Cuba has a program called “Jornadas de Interes.” Schoolchildren are given an opportunity to apprentice with adults working in the vocation they aspire to: be it a doctor, a nurse, an agronomist, a policeman, a schoolteacher, a mechanic, or a carpenter. Then why not an interpreter? Cuban children are exposed to sign language on television programs, many of which include a corner image of someone signing what is being said. If schools in Cuba were to include a brief introduction to sign language, as in Los Gigantes, the child who shows a lot of interest could apprentice with an interpreter. Them he or she could serve as a “junior interpreter”for deaf children in the classroom as well as teach signing to the other children.

What was exciting to me in these discussions with the CBR team and government representatives was the eagerness with which they explored new ideas. I am eager to learn what comes of them.

There were many other innovative examples of “awareness raising.” The best ones went beyond posters and skits to real life examples of ways in which disabled people are meaningfully included in community activities. Here is one example:

Meals on wheels.

In most towns in Cuba there are special government-sponsored “comedores” or dining halls for disabled and elderly persons, which provide two free meals a day. For those who can’t make to the dining halls there is “meals on wheels” delivery, though usually on bicycle wheels. In one village we visited, the person who delivers meals to nearly 30 disabled persons is himself physically disabled. He was born with deformed arms and hands, and one deformed leg. Nevertheless, this young man skillfully rides through the village, relaying hot meals in batches of 8 “cantinas” (stacks of metal dishes), which he carries in a big basket on his bike.

A picture is worth a thousand words. But it seems to me that one disabled person riding though the streets, proudly providing this kind of public service, has more impact than a thousand awareness raising pictures.

Strengths and weaknesses of the CBR home visits

While the social and integrative aspects of the CBR Project had many outstanding features, the therapeutic side – though it, too, had its successes – was more problematic. Of the several home visits I attended to observe how Activistas worked with disabled persons and their families, half were carried out well. But in the other half, the activities or advice provided by the Activistas had serious weaknesses, most of them fairly easily avoidable.

I should point out the weaknesses I observed in the technical/therapeutic area are characteristic of most CBR programs I have visited in different countries. But given the many strengths and possibilities in the Cuban program, I expected better.

The deficiencies in the therapeutic services and advice appear to have three underlying causes:

The first is the brevity of the Activists initial training: only three weeks. This is far too short to adequately cover the broad scope of activities they perform.

The second is the inadequacy – in terms of time, content, and technical competence – of follow-up and continued training.

The third has to do with the methods of instruction, paucity of participatory problem-solving skills, and job expectations focusing quantity more than quality of services rendered.

Let me give a couple of examples of home visits I observed, that demonstrate both strengths and weaknesses.

Home visit #1: Success? Failure? Or both?

Salvad�r, a frail, hunched man in his mid-60s, for two years had been unable to walk. But with the help of the local CBR Activist, he learned to walk again – more or less. Considered an outstanding “success story,” Salvador’s progress is dramatized in an impressive new video documentary of the CBR Project.

Salvador lives with his aging wife in a modest house in the village of Monjar�. For several years he has had a degenerative condition, which the local Activista, Maritza, for lack of a better diagnosis, labeled “arthrosis.” Unable to walk, Salvador spent his days slumped in a chair, doing nothing. He had become very despondent. Doctors had prescribed various medicines and a psychologist made periodic house calls. But nothing had seemed to help much.

Then Maritza, an energetic, very committed middle-aged woman, began to visit the house, 3 times a week. She involved Salvador’s wife in a home-based exercise program. She also recruited a local carpenter to make low-cost assistive devices. These included wooden parallel bars and a vertical ladder so that the man could pull himself to standing. Salvad�r gradually succeeded in taking a few independent steps, though his knees were still quite bent, making him tire quickly.

With all this attention Salvador’s mood had improved considerably. His wife took pride in helping him with his exercises, and the two seemed more understanding of each other.

Concerned with the social part of his rehabilitation, Maritza had arranged for a variety of assistive services and benefits. Because Salvad�r’s wife didn’t want to leave her frail husband alone for long, Maritza convinced the manager of the local subsidized food stamp store to attend her quickly. Rather than having to wait her turn in the long line, Salvador’s wife could come up front. That way she could get back to her husband sooner.

Maritza arranged for Salvad�r to attend public events. A bicycle rickshaw driver takes him to watch Saturday baseball games (which he loves). She coaxed other lonely elderly men in the neighborhood to come play dominos with Salvador. That proved good for everyone.

From what I have told so far, Salvad�r’s rehab appears to be a success. In some ways it certainly was. He recovered his ability to stand and begin to walk. His spirit improved. He began to participate in community events. He even became a “movie star,” appearing in the Project’s educational video.

However, there is also a down side to his story. Salvador’s rehabilitation remains far from complete. His potential for walking better was largely unmet. He walks in a half-crouched position with his knees quite bent. He therefore tires quickly and after a few steps has to sit. Hoping to for further improvement, Maritza continues with the same range-of-motion exercises. But no further improvement is apparent.

We asked Maritza to show us the exercises. She explained they were to help straighten his knees. However, when Salvador lay down, his knees were straighter than when he walked. Clearly his crouching position when walking wasn’t caused by knee contractures. Could it be from flexion contractures of the hips? Mauricio (the HIB Project coordinator, a physiotherapist from Colombia) and I asked a series of thought-provoking questions to help the group of Activists, inviting them to make their own observations to determine why Salvador stood with bent knees. We showed them how to test for contractures in both his knees and hips. Then – when they had discovered that his crouched gait was due to tightness in his hips, not knees – we demonstrated what exercises and positioning might help to straighten his hips.

It was disturbing that one of the CBR instructors, rather authoritatively, began to demonstrate exercises that were entirely inappropriate.

Notwithstanding, I was impressed with the analytic skills and teaching ability of Mauricio, the HIB coordinator. Observing the inappropriateness of the exercises for a problem at hand, Mauricio guided the Activists (and their instructors) through what he called a “logical process” of problem solving. By asking practical questions, he helped them discover the cause of the underlying problem, why the knee exercises were unlikely to help, and to figure out what exercises and activities might work better.

Eventually the group, with considerable prompting, did figure out more fitting alternatives. They learned simple hip-stretching exercises (illustrated in my books) and made plans to construct a standing frame to help Salvador slowly stretch his contracted hips. They now better understood the chain of cause and effect, and can work rationally toward helping Salvador walk more upright and tire less. Everybody learned a lot.

From this home visit I had mixed impressions. In many ways the local Activista had done an outstanding job, especially with social, psychological, and community support. Also, I was impressed with Mauricio’s participatory approach to logic-based problem solving. With a few more rehab experts and gifted educators like Mauricio to help the Activists improve their analytic and problem solving skills, the quality of the therapeutic side of this CBR Project could be greatly improved!

But the fact remains: the Activists – as well as some of their instructors and supervisors – lacked the know-how and problem-solving skills to help Salvad�r approach his potential. Inappropriate exercises were applied, and had not been spotted and corrected by the backup team. More worrisome still, the pattern of shortcomings I observed with Salvador I saw repeated on other home visits. While the Project has many excellent features, certain shortcomings urgently to be dealt with, especially in the technical area.

Home visit #2: A need to break out of the box.

Our next visit was to the home of Alicia, a stout 43-year-old woman whom the local Activists described as “arthritis.” Alicia walked with a cumbersome, dipping gait and complained of pain in her hip and lower back. Her pain had increased over the years and currently pain, when she had walked a lot during the day, kept her from sleeping.

We had the opportunity to watch how the local Activist worked with her “patient.” This was the first visit the Activist had made to Alicia’s home. Alicia lives on the 4th floor of a large low-income apartment complex. The first thing the Activist did was to give Alicia her standard “charla” (informative talk) on arthritis, using lots of big, scientific terms. Then she started a series of range of motion exercises on Alicia’s right limb.

Unfortunately, the whole session was a comedy of errors. First of all, the Activist began the treatment before she asked questions to find out what the real problem was. And she jumped to conclusions. Since Alicia had pain walking, the Activist decided the routine treatment for “arthritis” was close enough. It was one of the pre-packaged topics she was supposed to teach, and she had a handout flyer on it. She had Alicia lie on a bed and applied passive range-of-motion exercises to her affected leg, ankle, foot and toes. When we asked her why she was doing this, she explained (erroneously) that these totally passive exercises were “to strengthen her muscles.” She did nothing more.

When she finished, I asked Alicia about her problem and how it began. It tuned out she had a congenitally dislocated hip. Her right leg was 6 cm. shorter than the other. What made her pain worse was climbing up and down the 4 flights of stairs to her flat.

Disturbingly, when I asked all those who were present – Activistas, and representatives of the CBR team at the municipal and provincial level – if they thought the exercises that the local Activist had performed would help, those who said anything said, “Yes.”

Again, gently and methodically, Mauricio stepped in, encouraging a “logical process” of cause and effect problem solving. He helped the local Activist reason through a sequence of important logical steps, starting with a 2-way dialogue to learn more about the problem. Then, he helped her understand that passive range-of-motion exercises won’t help strengthen muscles. To get stronger, muscles must be used. Finally, before doing exercises to increase range of motion, one needs to have a reason for doing so. Mauricio had the Activist check the range of motion in Alicia’s joints. They were normal.

As for muscle strengthening exercises, Mauricio asked, does Alicia really need them? She lives on the 4th floor. No elevator. Every day she has to climb up and down with her dislocated hip.

She is seriously overweight. What recommendations might be most helpful?

“Loosing weight!”

What else?

A discussion evolved in which the groups drew together a list of measures that might be helpful. What was interesting was that most of the suggestions were “outside the box” of the routine therapy procedures that the Activists had been taught. Possibilities included:

An effort to loss weight (with recommendations).

An evaluation of how Alicia climbs the stairs. Might there be a way to reduce stress on the affected hip and back?

Experimentation with an elevated sole on the shoe of the shorter leg. (When this was suggested, Alicia said that an orthopedist had put a lift on her shoe years ago, but it had increased her pain. Why might that be? The group discussed a possible explanation. Perhaps the lift was too high, given the deformities already in place. Might a less of a lift be helpful? Why not experiment with lifts of different thicknesses? To do this at low cost, layers of cardboard could be temporarily taped to the sole of her shoe – to find out what added height if any, might be most helpful.

What about all those stairs Alicia has to climb? To avoid having to climb them sop often, could neighbors perhaps help Alicia do her shopping? Could some willing child volunteer to help carry Alicia’s groceries up the stairs?

And finally – Why does Alicia, with her dislocated hip, have live on the 4th floor? Clearly the biggest difference for her long term well-being would be to live on the 1st floor. She wouldn’t have to climb all those stairs! In most countries such health providing reassignment of dwelling would be difficult. But in Cuba, with the close links between the CBR team to the cooperating network of service organizations, it might just be possible. Certainly worth looking into! And it fits into the broad range of activities the Activists tend to take on.

This exploration of possible solutions was a good learning session for everyone. It became clear that if the CBR program is to achieve its goal of “integral rehabilitation” at the community level, the preparation of Activistas (and their teachers and supervisors) needs to be more extensive. Equally important – as Mauricio kept emphasizing – it needs to focus more on logical problem-solving skills.

Development of logical problem-solving skills – the ability of people to think for themselves, to make their own observations and draw their own conclusions rather than just follow a routine set of standing orders – is important not only for improving the quality of CBR home visits. It is equally important for improving quality of life in any society that aspires to inclusion and equal opportunities for all. This is the goal of CBR. It is also the goal of the Cuban Revolution.

“This is why CBR as we envision it is so important for Cuba!” said one of the disabled leaders of the CBR Provincial Team. He had the rebellious glow of Bob Morley, as well as the long dreadlocks. He and I hit it off from the first. “CBR can, in its own equalizing way, help Cuba realize the dream of Che and Jose Marti: the dream of a just and caring Society for All! But,” he added, “We still have a long way to go.”

Making CBR more inclusive

As originally planned, the CBR Pilot Project in Cuba caters to only three groups of disabled persons: blind, deaf, and physically disabled. Why? These 3 groups are the only ones represented by their own nation-wide, government-approved Associations. Since these 3 Associations are the means by which disabled persons play a central role in the CBR Project, it was decided to focus on these 3 disabilities.

As it turns out, the largest and most marginalized (most voiceless) group of disabled persons in Cuba are those with mental retardation. Families of mentally handicapped children have no national association – and therefore less say in the decisions that affect them – like special schools vs. mainstreaming. In my book, this is a good argument for including them in the CBR program. Also, many of the Activists find themselves working with children who in addition to having physical, visual or auditory deficit were also intellectually impaired. They want more information and skills for working with these children.

At the “Evaluation Seminar” at which I presented my findings, I raised the question as to whether families of mentally handicapped children should be included in CBR program. A vote was taken, and the decision for inclusion was unanimous. After all, a disabled Activist pointed out, it doesn’t seem right to exclude any group of disabled people, since our stated goal is inclusion of those in greatest need.

It turns out that in Manzanillo, a neighboring municipality in Granma Province, parents of mentally handicap children have formed their own local Association. Reportedly, they do an outstanding job of peer counseling, advocacy, preparation of special education materials, and community awareness raising. The CBR team responded positively to the suggestion of working closely with this local parent-run Association in the process of up-grading the CBR Project to include mentally slow children.

Another good suggestion was that perhaps the CBR collective, with its connections to the social services at different levels, could be instrumental in helping the local Association in Manzanillo become a province-wide and eventually a national, government approved, Association of Families with Mentally Handicapped Children.

Participants recognized that in Cuba, as in the rest of the world, change for greater inclusion and equal opportunities needs to be spearheaded from the bottom up, through organized action by the less advantaged groups.

What happened to Cerebral Palsy?

Another disability that appeared to receive insufficient attention in the CBR program was Cerebral Palsy. In theory, children with CP are included in the broad category of Physical Disability. However, only a few Activistas said they were working with such children. I was told that there simply weren’t many children with CP in Cuba. I found this hard to believe. Worldwide, the incidence of cerebral palsy in rich countries and poor is in the around 1 in every 300 live births. In countries with good maternal, pre-natal and peri-natal care, many cases of CP are prevented, but also many brain-injured newborns are saved; so the incidence of CP remains about the same. Why should Cuba be different?

Nobody in Granma seemed to have statistics on CP. On my last day, a visiting health official from Havana told me that the latest survey reports an incidence of CP of 1.2 per thousand (about 1 in 800). I suspect even this statistic is unreliably low. But even at 1.2 per 1000, the Activistas should have been attending many more children with CP. Part of the difficulty appears to be that on their medical reports at birth some of these children are diagnosed as simply “congenito” (congenital) or “retraso” (mental retardation), with no mention of CP.

On the average, half of children born with CB are also mentally retarded. Since the CBR Project has not covered mental retardation, many of these kids fall between the cracks.

Another problem is that the Activistas have been taught so little about CP that they don’t recognize it when they see it. One Activist described a child whose body was “all twisted and stiff, with clenched fists.” She was attending the child with the catch-all treatment plan for arthritis.

I managed to see only one child with cerebral palsy, after repeated requests. Ironically, this was an extremely disabled girl who lives in the municipal seat of Bartolome Maso only 50 yards from the CBR headquarters. Yet no one in the CBR program was attending her, though her condition was urgent! She is 15 years old but looks like she’s 6. Just skin and bones. She is profoundly retarded, functionally blind, and epileptic. Her whole body is spastic and she has no body control whatever. Her most serious problem – which has become life threatening – is a C-shaped spinal curve, so extreme that her ribs on her right side press against her pelvis. The lung on that side is so compressed that she is in chronic respiratory distress, with difficult breathing and a lot of phlegm, which she had difficulty coughing up.

The girl was not without medical care and other services. A family doctor visits the home regularly. A neurologist tried a spectrum of anticonvulsants to control the fits, and when none worked had left on a maintenance dose of Phenobarbital (which is counter-indicated in persons with respiratory compromise). A teacher trained in special education visits daily, though she does little more than provide moral support.

The girl was also provided a wheelchair. Unfortunately it was an adult chair, way to big for the small child. I suspect that the wheelchair, which the girl has been placed in all day long for years, is one of the causes of her life-endangering spinal curve.

One of the Activistas visiting the girl’s home was asked to show me how she would respond to the needs of this child. (I felt sorry for both the Activista and the family, since the needs of this girl would have been a huge challenge even to a team of experts.) The Activista did her best with the limited training she’d received. First she tried moving the child’s arms. Finding them stiff, she began a series of rapid, water-pump-like exercises. That only made them more rigid.

This is where I and Mauricio, together with another very capable physiotherapist who was accompany us, stepped in. Soon it became an important learning session for everyone, including family members, who contributed important ideas. Together we drew up a plan of action that included everything from teaching the mother about postural drainage (to drain the phlegm from the girl’s lungs) to the design of a special seat to help her sit straighter, so as to permit more space for the compressed lung.

I was delighted to see that Francisco – one of the disabled leaders who provides backup for the Activistas – had innovative ideas for designing the special seat. He offered to build it with the help of an elderly disabled carpenter whom we had visited earlier in the day, who makes assistive equipment for the Project). In the “Evaluation Seminar” a few days later, on discussing the needs of the little girl with CP, Francisco demonstrated two cardboard models he had made of possible special seats for the child.

Everyone agreed, that in addition to adding mental retardation to the scope of their rehabilitation activities, they urgently needed more training, instructional material, and skilled backup for responding to the needs of children with cerebral palsy.

We also discussed the need for more of a logical, analytical problem-solving approach to Activist training. We discussed the need for a more interchange with the families – looking for solutions together, as equals – rather than just given people a series of routine “charlas.” This give-and-take, open-ended, egalitarian approach to problem solving is important not just for Activistas and their instructors. In a society that strives for inclusion and equality – as does both CBR and of the Cuban Revolution – it is important for everyone.

We talked about the need for this open-ended problem-solving approach to begin early, in the schools. If today’s children of today are to become tomorrow’s Activists and the “agents of change,” schooling needs to become more participatory and discovery-based. Teachers need to learn how to draw ideas out of their students rather than just push them in. Rather than just giving people routine instructions, everyone needs to learn to make their own observations and draw their own conclusions. Such is the education of “Activists” in any truly revolutionary process. I’m sure Che and Jose Marti would agree.

In this context, we talked about the potential of the Child-to-Child approach in Cuban schools. Child-to-Child, in the empowering form developed in Mexico and Latin America, could serve a double purpose. It would be useful not just for “sensibilizing” the children about the needs and inclusion of the disabled child, but also for facilitating a practical, open-ended, cooperative, discovery-based approach to problem solving. On these possibilities there was a lot of thoughtful and productive debate.

Finally, the Activistas felt that in addition to a longer period of both initial and follow-up training, with greater emphasis on logical problem-solving skills, what they most need to improve the quality of their work is more detailed and appropriate informational materials (mainly books).

Need for more reference materials.

The CBR team has worked hard to develop a wide range of instructional materials, guidelines, and handouts on the management of certain disabilities. A lot of the information and illustrations have been taken from our books, Disabled Village Children and Nothing About Us Without Us. But too often the parts extracted are limited to specific exercises and activities, without sufficient information on evaluation of needs and possibilities. What has been largely omitted is precisely that collective problem-solving process, together with the disabled person and family, to decide what is likely to be most helpful, and what is likely to be useless or harmful, for the particular person and family in the local environment. As a result, Activists tend to slip into ritualistic application of the same water-pump exercises for every person with a physical disability – as I witnessed on several home visits.

Cuba’s unique possibilities.

The above-mentioned shortcomings are ones that are seen in most CBR programs, not just in Cuba. What is unique about the Cuban situation is that the commitment to “inclusion and equal opportunity”is strongly shared, both by the CBR team and by the government at every level. In this world, with its growing polarization between the haves and the have-nots, this is indeed a revolutionary commitment.

I agree with Handicap International’s intention to continue its support for the CBR Pilot Project in Cuba for another 2 to 3 years, building on its strengths and working on the resolution of its shortcomings. Next year the Project intends to extend to another 2 municipalities. After that – when more of the wrinkles have been worked out – the plan is to scale it up to the provincial and hopefully the national level.

In my view, the CBR program together with the people of Cuba and the Cuban government can help this small island nation keep the Revolution evolving on the path of building more caring and sustainable alternatives for this troubled world.