Across the Atlantic to Mexico and Venezuela and visiting disabled people

(Excerpted from Memories that linger:
My journey in the World of Disability by Padmani Mendis)

My main finding was that the Manual had been adapted and translated into Spanish before the project started and this was a distinct advantage. Community health workers appeared to make use of it in the homes visited. I was particularly impressed with the use they made of the package on play activities. They taught mothers how to give extra stimulation to their children who had disability, involving the whole family in the process. In this way they were careful not to show a difference to the disabled child.

In one home, we met a three-year old child who had multiple disabilities with difficulties in learning and moving. He had not been able to sit unaided. Now after some weeks he was walking, pushing a home-made cart. The father said he had made this by adapting the drawing in the Manual.

In another home we met a five-year old child with cerebral palsy who also had difficulty moving. When the community worker found her she could only sit up. She was now walking with minimal help after the same period of time. In both homes, all the children in the family sat together with their parents to talk with us.

Another finding was that the packages on communication for both children and adults brought poor results. Individuals and families found these difficult to use. Although with most individuals with this disability, learning to communicate does require time, it appeared to me that this first draft did not contain enough specific material. We revised these extensively when we prepared the second version of the WHO Manual “Training the Disabled in the Community”. We used our field learning such as this to make significant changes that would bring better results for users.

I was happy that I had the opportunity to experience this project in which Community Based Rehabilitation (CBR) had, within this time frame, been included in Primary Health Care apparently successfully. On the whole, the disabled people being visited at home appeared to show early and rapid improvement. The Manual, it seemed to me, showed the individuals and the families what can be achieved in spite of disability. When this had been realised it provided the motivation called for to work on the tasks that the disabled member could not yet do.

Venezuela – an adventure on arrival in Caracas

From Mexico, Dr. Hindley-Smith had arranged for me to go to Venezuela. Here I was to meet with persons in rehabilitation and in Primary Health Care. My task was different – in Venezuela I was to assist in planning a project to introduce CBR and to field test the Manual.

My counterpart was Dr. Jose’ Arvelo, the Chief of the Department of Medical Rehabilitation in the Ministry of Health and Social Welfare. This is the first time I met him. I was to meet him again soon when we participated as members at the Meeting of the WHO Expert Advisory Committee on Disability and Rehabilitation held in Geneva the following February. The expert group was small, five to six members as such meetings usually are. We talked often about what was happening in Venezuela.

My arrival at Caracas Airport was something of an adventure. The WHO office in Caracas and Dr. Arvelo had not known about my flight and expected time of arrival. All due to difficulties in communication at that time which was by fax. These were not always to be depended on. Further, Dr. Arvelo had no idea where I was coming from.

Added to that the flight was delayed. Dr. Arvelo had meanwhile gone to the airport to meet three flights in the hope that I may have been on any one of them. I was not. He had given up in desperation not knowing what to do. Eventually my flight arrived at Caracas that night at 3 a.m. There was of course no one to meet me. Nervous and afraid, I approached a taxi and asked the driver to take me to a hotel. Fortunately, the driver was a good man. He took me to a small hotel in the city and I checked in. The room was rather dirty. The bathroom was no better. But the room, once locked, gave me safety.

Dr. Jose’ Arvelo

The next morning I contacted the WHO office in Caracas which in turn informed Dr. Arvelo where I was. He told me how worried he had been and how relieved he was to see me safe. He was sorry I was in such a sordid hotel. And one, apparently, with a “reputation.” He had me check out immediately and took me to one that was larger, newer and safer. It was moreover situated in the heart of the city.

It was in this hotel that I experienced my first earthquake. I awoke in the early hours one morning to feel myself on my bed, in my room, swaying from this side to that about five or six times. It really did not last long enough to frighten me too much. When I told Dr. Arvelo about it the next morning, he told me there had been an earthquake across the border in Columbia.

It had caused some damage locally, but no deaths. I should have mentioned that I was on the 20th floor of a very tall hotel.I experienced another earthquake not much later when I was on the 12th floor of the Holiday Inn Hotel in Manila. That shook more and really scared me. Many years later I experienced tremors while staying in a hotel in Kandy, Sri Lanka. It was very mild. There have been a few since then in the Kandy area. Are these a prediction of earthquakes to come?

Dr. Arvelo’s concern for me throughout my stay was most touching. He and I spent a great deal of time together during my three weeks in Venezuela. Because it was he who took me everywhere, driving himself. As the Chief of the Department of Medical Rehabilitation in the Ministry of Health and Social Welfare he held a very important position in the country.

Within a few days of my arrival in Caracas, Dr. Arvelo took me home to meet his wife and three lovely young daughters. We got on well – there was so much they wanted to know about me, my work and my country. After that I became a frequent guest in their home. I had no time to be lonely and homesick in Caracas.

What I liked most about the hotel was that it had a Juice Bar situated just across from it. So in the morning for breakfast I would walk across for a deliciously fresh, cold, large fruit juice. And the same in the evening after a tiring day. In the mornings I would have avocado or guava, both heavy on the stomach. In the evenings something lighter, may be orange or pineapple. I can still taste those delicious flavours. Nalin and I often wonder over breakfast why it is that fruit does not have the same particular flavours that they did when we were young.

Collecting information for a CBR development project

Dr. Arvelo had arranged a programme for me with two broad aims in mind. One was to inform me of the present availability of rehabilitation services for disabled people. In the urban areas, Venezuela had a wide network of rehabilitation services staffed by well-trained professionals. From this we could ensure that selected project areas will have technical support.

The second was to enable me to know the pattern of Primary Health Care that was being developed in the country. This would enable us to decide on the feasibility of incorporating the field trial into this system. And the where and the how of doing it.

With these aims in mind we met and talked with people at all levels of the two systems. Professors, managers, disabled people, specialists, medical officers, therapists, social workers, teachers, consumers and others. We covered the areas of cerebral palsy, mental retardation, psychiatry, psychology, paediatrics, rehabilitation, physical medicine, visual impairment, hearing and speech impairment, leprosy, cardiac and chest disorders, drug addiction, mental health and psychiatry.

We also met the presidents and members of the National Associations of Physiotherapy and of Occupational Therapy, the Permanent Presidential Commission for the Care of the Mentally Retarded, and the National and Regional Institutes for Dermatology which looked after Leprosy. We had meetings with officials in the Ministry of Education and in the regional directorates of education. Sometimes we met these people singly, often in small groups.

To meet a selection of these people there were times when we travelled by road such as to Maracay in Aragua State and Barquisimeto in Lara State. At other times we flew as we did when we were headed to the Andes Mountain areas.

Primary Health Care

The urban – rural population ratio at that time was said to be 80:20, the opposite of ours. The country had a good hospital-based health care system for the urban population. Primary Health Care (PHC) was being developed for the 20% rural population. At the grass roots, it was being delivered by auxiliary nurses based in rural dispensaries. These served a population of 100 – 1,000 persons.

Auxiliary nurses were supported through visits by medical officers or registered nurses. Both worked at health posts, each serving a population of 10,000. They in turn were supported by health centres which had some specialised services and about fifty beds for in-patient care. The health centres in turn were supported by hospitals, each with up to 300 beds and more specialised services. PHC was also called simplified medicine just as CBR was called simplified rehabilitation in many South American countries.

I am still asked the question as to why CBR went into Primary Health Care in many countries. The answer is simple. It was the only development strategy at that time that reached people in their homes. Which had a support and referral system. WHO’s visionary Director-General Halfden T. Mahler made clear the difference between medical care and health.

Medical care is concerned with the diagnosis and treatment of disease. Health care is much broader. It was at that time defined as having four components, namely promotion, prevention, treatment and rehabilitation. Through this fourth component disabled people were clearly recognised as partners in the PHC strategy.

Selection of Project Areas and introduction

Under this project CBR was to be included in the Primary Health Care system in Venezuela. Within a few days, we had visited Aragua and Lara states and had spoken with people there. They had already made plans for the project. It was to start with training PHC personnel in their states. The Manual was available in Spanish from Mexico so this was no problem.

Training in PHC in most countries at this time used the “trickle down” effect. We met professionals from the rehabilitation institutions and other training centres for school teachers and the local administrations to discuss their role in training and implementation. We returned to Caracas to inform the people there as regards how and what the States of Lara and Aragua would do to initiate CBR in Venezuela. The projects had the support they required from Caracas.

Rehabilitation of people with leprosy

At this time Leprosy was very prevalent in Venezuela. Dr. Arvelo wanted me to experience how people who had leprosy and leprosy care were included successfully in the community. We flew to the Andean region and visited the capital city of Merida in Merida state, San Antonio and rural areas of the state of Trujillo. In these areas, we were at the northernmost part of the Andean Mountain range that ran down the coast of South America through seven countries.

I could not imagine that I was here, so far away from my own country. It was often windy and quite cold. I was not prepared for this either and Dr. Arvelo often lent me his coat to keep me warm. He told me potatoes and tobacco had originated in these parts of the Andes. I asked him about the rubber plant because I knew it came from South America. He told me it would have come to us from Brazil.

Leprosy was endemic in these states. In these areas, rehabilitation departments worked closely with leprosy services to provide comprehensive care to individuals and families. There had never been special centres for leprosy in Venezuela. All people who had leprosy were treated as they continued their normal lives within their family and community.

The visit to the home of one particular family comes to mind. The mother came out of her home to greet us. She was wiping her hands on her apron. It was apparent that she was attending to her housework. She was happy to talk with us about her condition. She related to us how she found herself having leprosy on a routine visit to her doctor.

She did not know how she had got it, but there were many people in her town who had leprosy before she did. That was some three or four years ago and she had been on medication since then. A person from the health service visited her regularly at home. At first the health visitor told her what care she should take of herself, and also when she looked after her family. Now the health visitor had become a friend and came routinely to make sure she was keeping fit.

As she talked with us, her children, about four or five, came running to where we were, appearing, as it were from nowhere. They clung to their mother as she spoke. They said they had been playing in the yard of a neighbour’s home.

There were indeed many lessons to be learned here by countries in Asia and Africa. We had, when leprosy was diagnosed, isolated and segregated our people in institutions located far away from their communities. To such an extent that stigma and fear was propagated and myths were created by the condition. As in my country, many people with leprosy were imprisoned in these institutions for life. Their families, fearing the disease refused to take them back. These were and are, forever their homes. Still isolated. Still segregated.